Lung Transplantation 101

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2015/16 is turning out to be another extraordinary year.

Andrea has continued running. And what a runner she has turned out to be! In 2014, she ran the Inca Trail at altitudes hovering around 14,000' for many days. She made friends with a fabulous group of people who, like her, are certifiably crazy. Late this summer, she rejoined the group in Calgary, Canada, for a 50-mile run in the Canadian Rockies. This is no mean feat.

Inca Trail

In our last update, I wrote, "I myself look forward to joining her from time to time on these interesting, educational journeys." But this was not to be. For those who know us, the reason is clear. I smoked for many years, and the result was Chronic Obstructive Pulmonary Disease (COPD). Had I attempted to join Andrea in Peru, I would've fallen over stone-cold dead. My lung capacity now stands at 8% of what it should be. COPD never improves; it is a long, painful downhill ride. Oh, I did my best, working out three or four times a week, and walking for two or three miles a day. I didn't set any land speed records, but I kept my cardio-vascular health in the best shape I could. But if I ever again wanted to join my bride on trips to the mountains for skiing, hiking, or just plain sightseeing, I had to do something proactive about it.

On Mother's Day, we joined our old friends John and Rainey Cheek for a big brunch buffet at Lake Lure. They also invited another couple, who were looking to relocate in Hendersonville. Turns out that the guy, Steve Garrett, told us he was on a waiting list for a lung transplant, and he was much younger and had much highter lung capacity than me. "Maybe I should look into this," I thought. And so I met with my doctor to discuss it. Like all things, there are at least two sides to the transplant coin. Was I willing to gamble my remaining, relatively comfortable life on an extremely risky surgery with no guarantee of long-term success? Was I even a candidate? Fortunately, we live within a few hours of the finest transplant center in the known universe, Duke Medical Center. I got on the list for an evaluation.


And what an evaluation it was! One week of testing, poking, prodding, interviewing, and more. Last time you gave a little blood for your lab work, you probably gave two or three little vials. Day two at Duke, they took 22 vials! I didn't know there were that many tests. CT scans, XRays, Manography (where they stick garden hoses down your nose into your tummy to evaluate GERD and more, leaving one tube for 24 uncomfortable hours), physical evaluations, meetings with psychiatrists, social workers, financial advisors, pulmonologists, cardiologists, cardiothoracic surgeons, pulmonary transplant surgeons, and Little Vinny, who just likes to take you out back to slap you around for awhile. I took pulmonary efficiency tests, filled out forms, walked around tracks, subjected myself to invasive heart cath labs and more. You get the idea. All the while, you question your motivation: Do I really want to do this? Is it worth it? How did we even get here. I finally came to the conclusion that I could either let fear guide my life, or I could be guided by hope. Finally, after evaluating my swallow with another down-the-nose study, we got the call: Relocate to Durham . . . now!

So, after much discussion between us (this was Andrea's decision as much as it was mine), we filled one car and drove both to Durham, where we had selected a very snazzy pad to live in. Spacious, modern quarters very conveniently located within shouting distance of Duke. Lots of amenities, like theatre rooms, workout and cardio rooms, community rooms with pool tables, swimming pools, BBQs, undercover parking. All nifty stuff. We rented furniture from Cort, and brought just enough stuff to make the place feel like home: rugs, paintings, sculptures, kitchen utensils and so forth.

I am a very lucky guy to be married to Andrea. She is my Primary Caregiver, and is very highly qualified as an Intensive Care Nurse of long standing. I was also deeply touched by the willingness of friends to jump in as Secondary Caregivers (in case Andrea gets sick or even just needs a break). Becky Elkin stopped by our Asheville house on a Saturday to drop off some garden vegetables, and when she found out what was going on, she instantly volunteered. This brought a tear to my eye, believe me. Same with my wonderful daughters, Melissa and Tracy. "We're there for you, Dad!" Andrea's sister, Brigitte, even volunteered to travel from Austria to help out. Other friends jumped in as well, like Dawn Grohs and Debbie Bryenton. This is no small thing. The Secondary is "on call" for up to six months, and has huge responsibilities. Judy Wells not only volunteered, but she is looking after our house while we are away. And how could I ever forget the kindness and generosity of our great friends, Walt and Kathy Loy? They put us up (and put up with us) while we shuttled back and forth looking for a place to live while enduring endless tests. Other friends, too many to mention, have offered help and assistance in every way imaginable.

Exercise Room at Lofts Luna

Many friends and family members have asked me about the scheduling. Basically, I have to complete 23 pulmonary rehabilitation sessions, which take place five days a week, four hours a day. Lots of carefully supervised weight lifting, walking, stationary biking, and floor exercises. I put everything I've got into these sessions, and come home completely exhausted. My progress, though, has been extremely good. (I do cheat a little; I work out independently on the weekends, making it seven days a week.) Duke wants their patients to be in the best possible shape for their upcoming 12 hour surgery. Additionally, there are daily lectures and training sessions on good swallowing (a problem after this particular surgery), coping, risks . . . you name it. The Primary Caregiver has to attend these sessions.

Once completed satisfactorily, I will be formally listed, which means that I could expect to get my transplant anytime within the next three or four weeks, probably sometime in November. Two weeks in the hospital, then back to pulmonary rehab for another 3 to 6 months. No drinking again. Ever. Exercise for the rest of your life (a good thing!). Expensive drugs forever (up to $3,300/month for one drug alone!). No more sushi or medium rare burgers. A world of sunscreen and hats.

But next year, I fully intend to join Andrea back in Bregenz for weeks of skiing, festivities and family fun.

There you have it. Doesn't exactly "fit" on facebook, does it? "Today I had eggs for breakfast," or "look at my cute puppies" just doesn't seem to align with "Tomorrow, they're going to rip my lungs out!" But on a more pedantic note, we just got back from a wonderful brunch at the Guglhupf and we're on our way to a piano concert at Duke. Great way to spend a rainy day.

When this is over, we'll head back to the Keys, where we will see our brand-new kitchen for the first time. We are really excited about this, and will post photos as they become available. We really love the Keys house, where we always look forward to our grateful refugees from the cold frozen North.
--Updated 9/26/2015

What's going on? The last week of September Back to top

It's amazing how focused this experience is. The most intense activities, at least during this pre-surgery timeframe, center around the rehab center. The days are similar, consisting of weight training, walking, biking, floor exercises and almost always a lecture of some sort. Sometimes the lectures are about swallowing exercises (a function that is often impaired during the surgery), or anatomy and physiology, or coping, but they are always either about preparing yourself for the surgery or coping with its aftermath.

The surgery itself is no snap; it can last anywhere from 6 to 16 hours. So something is likely to take a hit: brain, kidneys, heart, gut, liver or even the loss of fingers and toes due to poor perfusion during the procedure. And there is always the chance that your feet will never touch the ground again. It's a surgery that is, we are told, 10 times riskier than a heart transplant.

No matter. Those risks are nothing compared to the certainty of the decline in quality of life if this opportunity is not taken. I'm all in.

So I focus on pushing myself a little harder each and every day. I never settle for "good enough." Thursday I walked 1 1/2 miles in 30 minutes, 3X faster than Duke requires. I have gone faster and further on my nemesis, the stationery bike. I lift heavier and with more reps every day.

Today, Friday the first, it all caught up with me a little. I went into AFIBS (Atrial Fibrilations) which led to a long string of Premature Ventricular Contractions, which the EKG characterizes as Ventricular Tachycardia, or VTachs. This does result in a certain number of folks scurrying around with worried looks on their faces, but I got over it within 10 minutes or so and they let me continue my exercise program. I did surprisingly well, even after all that. It did take a lot out of me, though.

What caused it? Who knows. Yesterday, they slapped a testosterone patch on my arm (one possible side effect: elevated heart rate) right after giving me a super slug (two shots) of Hep B Vaccine (possible side effect: elevated heart rate). I also skipped breakfast and gulped down a couple of Fig Newtons for energy right before my workout. On me, the effect of a slug of sugar is often to trigger AFIBS or Atrial Flutter. I guess all these factors ganged up on me at the same time today, and the result was a bit of a mental letdown. Specifically, I can't help but wonder how this may affect my status as a transplant candidate. This thought is a tiny bit stressful.

But, it is the end of another week, and I'll be listed for transplant in a week or two, which means I may get my new lungs in a couple of weeks, or more likely, within a month. We'll see; it all depends on factors such as my "score", the doners available and their physical characteristics (chest size, blood type, serum analysis, etc.), and other technical factors which are beyond my control. The only factors within my control are to stick to the physical improvement plan, eat well, drink not at all, and to keep myself healthy and prepared.
--Updated 10/02/2015

What's going on? The first week of October Back to top

What a great week! Last Saturday (Andrea's birthday), we enjoyed dinner with Stan and Bettye Sue Kline of Vicksburg, Mississippi. Bettye had a lung transplant not long ago, and looked like a million dollars before taxes! She attentively complied with every detail of the program, and will no doubt be a model lung recipient. Two things were especially interesting about this dinner, besides the warm, outgoing personalities of the Klines: 1) We dined at an outstanding restaurant with the unlikely name of Nana's. On Yelp, it is the highest-rated restaurant in Durham and we could easily appreciaty why. The menu was extremely creative, local, and unexpected in its offerings and variety. The wines were superb (I was told). 2) Bettye Sue is as charming a southern lady as you could ever hope to meet. From her honey-coated accent to stories of her upbringing in Vicksburg, you would naturally expect that she would be very anxious to get back to her lifelong home after a six-month stay in Durham. But no, it turns out she and Stan had come to love the area and furthermore, had come to feel a part of the community of doctors, patients, physical therapists, and so many others who become a very close, almost intimate part of their daily lives. Who in Vicksburg could ever relate to what she had gone through here? Only veterans of this medical assault can understand what their friends in the next foxhole have gone through, and she is leaving all that support behind. It's clear that she loves Vicksburg, but Durham had become her home, in a way that I completely understand.

Back to Andrea's birthday. I wanted to find some way to show how much I love and appreciate her, so I traded in the Mercedes ML500 and put her behind the wheel of a new Lexus RX 350. It's a dandy. Pearl white, loaded, and smooth as butter. Not the kind of car that makes your heart beat faster, like a Porsche 911 or something, but very slick, ultra-reliable, and solid as a rock. I also got her a good pair of running shoes. She is running a lot, and I want to make sure that her feet and joints are well taken care of. She went through four pairs of shoes before she decided on her first choice.

On Tuesday, our great buddies of many years, Jim and Becky Petranka, drove from Asheville to Durham to get the lay of the land. Becky is our secondary caregiver, and in her usual thorough way wanted to get a feel for the place and the process so that she could do her job better if called on to do so. They attended lectures, visited the clinics I go to, explored the Duke Medical Pavilion, and read everything they could get their hands on about the process. Kind of nice that this apartment complex provides a free apartment for guests of the residents, so Jim and Becky had a nice pad with a king-size bed for free. Nice benny. On Tuesday, we tried the Q Shack, reportedly Durham's best BBQ. Best chili I ever tasted. Great St. Louis style dry-rubbed ribs, excellent brisket, and ice-cold beer. Definitely a worthwhile stop.

On Thursday, I had a series of clinics that started at about 7:15 am. Chest X-Rays, bloodwork (another 9 vials or so), pulmonary function tests, Hep-B accelerated booster shots, and a meeting with yet another doctor, Michael Thomas Durheim. Great meeting. Dr. Durheim was extremely personable, knowledgeable, and helpful. He assured me that nothing stood between me and my new lungs, and he saw no reason why I wouldn't be formally listed following the completion of my rehab next week. On average, that means that I might reasonably expect to get my new lungs in about three weeks from now. Could vary, of course, but that's a realistic timeframe. One of the guys I was in rehab with graduated last Friday and is already in recovery after his transplant surgery. That kind of news is electrifying to our little group.

Speaking of rehab, it went well this week. I give it all I've got, and I continue to improve. This is very satisfying and positive. It's been a very fine week indeed.
--Updated 10/09/2015

What's going on? The second week of October Back to top

Youth StringsI know I am starting to sound like a broken record, but this was another very fine week. By now you know how much Andrea and I enjoy the college scene. There is an abundance of culture and a youthful enthusiasm that charges the air. On Sunday, Andrea discovered a String Concert which, like so many events here, is free for the asking. It was held in an absolutely perfect venue. The concert was divided into three parts: an intermediate-level concert with musicians who appeared to range in age from 10 to 15, the Concert String Orchestra with slightly older, more advanced students and finally, the Youth Symphony presenting unusual selections from Beethoven to the sweet and subtle Sospiri Op. 70, and concluding with the "Lincoln Portrait" by Aaron Copland to mark the 150th anniversary of the assassination of Abe Lincoln. A rewarding, enjoyable evening.

On Tuesday, we had the privilege of hosting Walt and Kathy Loy, our great long-time friends from Charlotte. We had a couple of hours together before I had to scurry off to pulmonary rehab, but Andrea and the Loys enjoyed a beautiful day in the Sarah Duke Gardens and touring the campus at Duke. That evening, we dined at a restaurant we had discovered in July, the Parisade. Excellent. Perfectly prepared lamb, mediterranean sea bass, imaginative bruschettas, and freshly prepared salads. The conversation flowed as easily as it always seems to flow with Walt and Kathy, and before we knew it, it was time to drive home.

On Wednesday Andrea, Walt and Kathy toured Chapel Hill. Walt commented that this was perhaps the most beautiful campus he had ever seen, and I know Walt to be a lover of campuses. I myself was enjoying a rewarding week at rehab, having advanced both my weights and reps to the point where I was once again getting a pleasant sting with my workouts. Walt and Kathy took their leave on Wednesday afternoon and headed back to Charlotte, where they are preparing to remodel their kitchen.

Friday was a big day. I graduated from rehab. They make it seem like a wonderous thing, handing out certificates to rounds of applause and congradulations, but it is really a bit of a psychological ploy because what graduation really means is that the program is no longer paid for by insurance, so you have to pay for it out of pocket. Furthermore, you don't get as much assistance or supervision, because even though you are still doing the same thing every workday of the week, you are now in a "maintenance" program instead of a rehabilitation program. Still, it is another step toward the transplant itself. For me, it appears to be the last step. All my i's are dotted and my t's are crossed. I can now be listed as a transplant recipient. This means that I could be strapped down kicking and screaming as early as next Tuesday, but it will likely take another couple of weeks to get me on the table. I also got a visit from Jeff Goldstein, founder of the Lung Transplant Foundation. Jeff is the friend of a friend. On the slightly more technical side, I did have two additional tests this week: an EKG and a CT scan. The CT was especially important because it verified that there had been no change in a nodule they spotted in my lung in July, meaning it was scar tissue from a previous infection vs. a potentially more somber diagnosis.

Saturday was stunningly beautiful, with clear blue skies and cool fall temperatures. We celebrated by touring the Duke Primate Center, the largest sanctuary for Lemurs outside of Madagascar. Great lectures, a brisk walking tour, and video presentations rounded out our visit. But the day was too beautiful to let it end there. First, we had a fine lunch of schnitzels and soup at the Guglhupf, the cheapest trip to Europe in Durham, and then Andrea and I spent the late afternoon touring the Sarah Duke Gardens, which rival the Biltmore Gardens in beauty and speciation. The perfect Austrian dinner of Bavarian breads, cheeses, meats and olives made me realize I'd better get to this update before I crashed in front of the TV.
--Updated 10/17/2015

What's going on? The third week of October Back to top

I am a lucky man. I have a wonderful wife, great kids and grandkids, supportive friends and now, I discover, I have more than good fortune to call Jim Cummings my doctor. It is easy in this hurry-hurry-ding-ding world to think of doctors impersonally, as if they were technicians driven by the clock and the demands of over-regulation. But this week, I was humbled by Jim's compassion. He wrote me a simple email, reminding me that my good fortune in being selected as a transplant candidate was someone else's misfortune. Ying and Yang. He's right, of course, in balancing the scales between me and my doner, whomever he or she might be. Thanks, Jim, for reminding me of this in your gentle way and thank you for being my friend.

Still on the subject of friends, Rick and Nancy Davis drove to Durham just to say hello. We've known them for years, and have shared memorable adventures travelling the world together, first on the Sea Cloud sailing the Caribbean in inimitable style and more recently to Baden, Austria where we helped our mutual friends Walt and Kathy Loy (and many others) celebrate Walt's 90th birthday. We have spent time in their home in Ten Mile, and shared the Loy's house in Charlotte. Other friends, John and Julie Stoffels, had recommended a great brunch spot to us with the unlikely name of Watts Grocery. We joined Rick and Nancy there for great food and hours of conversation.

Skip Ward and his lovely bride, Charlotte, drove a long way out of their way to sample a tasty breakfast with us at the Guglhupf on Tuesday morning before my daily workout. Skip and I have the longest history together of any two friends who had never actually met. He and my brother, David, were long-time friends in the Florida Keys. Skip kept hearing about me and I kept hearing about Skip. We finally met a few years ago at a bar in the keys. We have since visited one or two additional keys bars together (so I am told), and we helped hold down a bar stool at their wedding in Jupiter a year or so ago.

Thursday was a biggie: I got formally listed! I must keep my phone on at all times and be prepared to get to the Duke Medical Center within a half hour. This is very exciting.

This week also proved to be one of the most interesting in other ways, too. Our apartment complex sponsers nifty events from time-to-time. This time happened to be an extraordinary dinner at Dashi, a Japanese restaurant. A dozen of us took the Lofts up on their offer of a free dinner with drinks and gratuity included. The dinner was Omakase, which means "chef's choice." Turned out to be a 7 course dinner! The company was lively and we filled the room with conversation and laughter. But this was not the big deal part of the evening. I had the great privilege of sitting next to Dr. Sharon Larson, a cardio-thoracic surgeon who happens to have specialized in procurement. Yep! This is the lady who will fly to the ends of the earth to procure my new lungs. She was fabulous. We yakked on and on, and she filled me in on every detail of the procedure. She already knew who I was, first because she had worked out with Andrea and secondly because she is on the team that discusses my case and status every Tuesday. She knew how hard I was working to be a worthy transplant candidate, which was rewarding to me because it assured me that I wasn't sweating it out unnoticed in a vacuum. Entertaining, informative evening.
--Updated 10/23/2015

What's going on? The last week of October Back to top

When I review what I have written here, I find that I have created a very one-sided journal. It reads like it's "all about me." It is not. I cannot say enough about Andrea's participation in all of this. Every week, as one tiny example, she attends Caregiver luncheons, learning more about what to expect, how to prepare for it, and ultimately how to cope with it. She feels, I know, cooped up and boxed in sometimes, and has little free time to herself. We cannot travel anywhere, not even to Charlotte, because now that we're listed, we dare not venture more than a half hour from the Medical Center. She does her best, though, and religiously works out hard three times a week and runs at least 5K an additional three times per week. At least she is in tip-top condition.

Had a little fun last Sunday at the Life Science Museum. I had the mistaken idea that this was an "adult" museum, but it was really a giant Discovery Center. Kids everywhere. Well, in for a penny, in for a pound. We rolled up our sleeves and reverted to third grade mode, learning oragami (we made some pretty mean frogs!), piloting spaceships, watching tornadoes, poking our heads into space capsules, lunar rovers, and spacesuits. We made little movies, created mathematical patterns, watched kids free-play, and had a ball. Afterwards, we went to Fosters, a down-home place where Deliverance meets the Mast General Store. Good food, very country, very comfortable. We'll go back.

Monday was interesting, to say the least. Shortly after I drove to rehab for my usual workout, Andrea came bursting in with an anxious look on her face. "Duke has been trying to reach you, but they called me. They might have a set of lungs for you!" Andrea went on to explain that this was not "the call"; it was just a heads up. I shouldn't get too excited, they said, but if another hospital doesn't take the lungs, they're yours. Meantime, I was told, nothing to eat or drink until further notice. I continued with my workout, keeping my phone on its loudest setting at all times. Nothing. I finally called the on-call transplant coordinator to see what was going on, because I was hungry and there was a dinner at Friday's for Lung Brothers, Sisters, and Caregivers at 6:00. "Go ahead," they said. "The lungs are not coming to Duke."

I was disappointed, of course, but I really enjoyed the dinner. There were a couple dozen "survivors", wait-listers like me, caregivers and family members. Instant family. You find yourself asking and answering to the most personal health questions imaginable. Questions you would never ask a stranger . . . or even a friend. It was also a good reality check: Not all the stories were of survivors. Some remembered and lamented the loss of friends to the transplant recovery process. Others are unlikely to ever receive a set of lungs, but they bravely laugh with their new "family" and enjoy the successes of others. Still others were wearing feeding tubes after three or four years. Dr. Hartwig, one of the pulmonary transplant surgeons, was rumored to have said, "The surgery is easy. It is the recovery that's very, very hard." At 7:30, Andrea slipped out for another strenuous workout after finishing her dinner, and I hung out just chewing the fat till it was time to go home.

Back to third grade on Thursday. Andrea and I signed up for a pumpkin painting fest at the Bull City Cider Works. Place was a hoot. When our GPS told us we had arrived, we couldn't believe it. It was a cross between a junkyard and a picnic area. Definitely not a place we would have pulled into on our own. But once there, we had a really fun evening! We were supplied with pumpkins, paint brushes, paints, an apron, and a flight of cider. There was a food truck, too, so I ordered Spam sliders. Two for $8. Tasted as bad as it sounds; Andrea left hers unfinished after one tentative bite. It was my first experience at a food truck, and after all I had heard, I was really looking forward to it. Oh well. But painting pumpkins was fun. I painted a haunted house and Andrea painted witch's legs. We were finally joined by our friend, Sharon Larson, who was still in scrubs. She happily sloshed and painted until we couldn't see anymore and had to take our pumpkins home.

Friday at Rehab was fun! All the physical and respiratory therapists dressed up and wore especially big smiles. These guys and gals work hard to help us prepare for the transplant surgery, and together they have developed the best-balanced physical workout I have ever had the privilege of participating in.
--Updated 10/30/2015

What's going on? The first week of November Back to top

Bob and Debbie Bryenton, our friends (and neighbors) from Asheville drove over on Saturday to spend a few hours with us. They arrived at about 11:30 and it was like a breath of fresh air to see them smiling at our door. Andrea had just completed her usual Saturday morning boot camp and was in the shower, but before long we were yakking away. We finally decided to get a bite to eat, and chose a restaurant we had never visited before, the Local 22. This is the sister restaurant to the Parisade--one of our favorites--so we knew it would be good. It was better than good. Bob and Debbie like to eat like we do, little bits of samplers, many interesting tastes instead of one big entree. Our table was filled with appetizers, sharables, and bites of this and that. We grazed contentedly and filled the room with laughter and words. The ladies kept making furtive glances at the table next to us, where actor Rob Lowe (a Duke fan) was enjoying lunch with his wife.
After lunch, Andrea and Debbie fast-walked a 5K on the Al Buehler Trail, a beautifully groomed, wooded running trail that winds its way around a golf course, a parcour, a bird-watching stand and a large pond. Bob and I agreed to settle the problems of the world, and promptly did so while seated on the couch. We succeeded. Look around. Things are already better, aren't they? Finally, they had to face the long drive back to Asheville, but it was a nice, albeit short visit.

This week happily shaped up as the week for visitors. Heinz and Dawn Grohs were headed to Wilmington from Asheville, where Heinz was scheduled to play in a tennis tournament. They decided to see how we were doing firsthand. Both are super-interesting people. Heinz is a doctor, and practiced pathology along with serving as an Austrian diplomat. Dawn makes things happen. I don't think there is anything she isn't capable of through a technique Andrea and I have come to characterize as "gentle pressure relentlessly applied." We met when Andrea spotted a license plate in the Asheville Racquet Club parking area that read "Wien." Only an Austrian would have such a plate, she reasoned, so she left a note. We have been the best of friends ever since. Our relationship somehow centers on fine dining paired with excellent vintages (Dawn is an amazing cook, and together they introduced us to Les Chaine des Rotisseurs. Furthermore, they are the most elegant hosts imaginable.) Anyway, we continued our tradition of adventuresome dining at Local 22 . . . the same place we went with Bob and Debbie . . . and again filled the table with pear prosciutto flatbread, chicken livers, appetizer boards, creamy mac and cheese, jalapeño hushpuppies, smoked trout, deviled eggs, and other little goodies. Having two Austrians at the table demanded an excellent Zweigelt and I could not resist a sip myself.

We have known Sheree Savar for many years; we share lots of friends and I know many of her family members, too. We have sailed together, travelled together through Europe and have just generally had a ball with her. A year or so ago she surprised us by buying a perfect house in the Keys. She had done this on her own, without consulting her old Keys buddies (us), so we did not know where she ended up. Imagine our astonishment when we discovered that she had bought a house on the same canal as us, five houses away. She was equally surprised. "Small world," my brother used to say, "but I wouldn't want to paint it." Anyway, because our last big trip together was to Baden, Austria, we decided to meet at the Guglhupf for some cheerful Austrian fare on a rainy Saturday afternoon. Along came Michael, Lexi, and baby Scarlett. Perfect. Scarlett was completely charming, Michael was a stimulating conversationalist, and Lexi looked to be the proudest mother ever. Afterwards, everybody stopped at the apartment and we were sorry to see them go.

Of passing interest, I continue to improve in rehab, pushing myself to my limits. The trainers have been helpful and encouraging. I am at levels I would not have believed possible two weeks ago on the stationary bike. I am lifting pretty well, walking fast, and enjoying the floor exercises. It seems like a long wait, though, and most days it feels like I'll never get "the call." But every now and again I run into a recent lung recipient and they all assure me it will happen.
--Updated 11/7/2015

What's going on? The second week of November Back to top

For the past couple of weeks, we have gone to Sunday matinees with our friends Caroline and Les. We met them the very first day we came to Duke for our evaluations back in July, and got along like we'd known each other for years. We go to morning matinees at around 10:30 and are usually the only people in the theater. Last week, we saw "Bridge of Spies" with Tom Hanks. It was arguably the finest movie I have seen in many seasons. See it if you haven't already. Today, we went to see the new James Bond movie Spectre. This too was excellent. After the film, we find someplace fun to eat. Last Sunday it was the Original Q Shack, the place we went with Jim and Becky for barbecue. This Sunday, we went to the Nosh, very near our apartment. Afterwards, we settled in around our kitchen table to discuss two research proposals that had been presented to us. The first, EVLP or "Lung in a box" (Google it!) allows the use of donor lungs that wouldn't quite make the grade otherwise. To make a long story short, these lungs are put onto their own life-support system for up to 6 hours, allowing them to be warmed and ventilated. If they pass muster--and the testing is rigorous--the lungs are flushed three more times with a fluid that is essentially blood without the red blood cells and then transplanted. I really like this idea. For one, it seems to be the donor leucocytes that are responsible for many spontaneous rejections and using EVLP the lungs are flushed not three times (as is the case with conventional transplants) but six to make sure all traces of the Steen fluid are removed. This must also remove many of the remaining leucocytes. The second research is based on using lungs from donors who have died "in the field" (which could very well be the Emergency Room downstairs). This, too, utilizes EVLP, but I am not as confident about this technique because I have not had the opportunity to research it. Not that there's a lot of research available. I mean, we are the research.

Monday was stimulating. When I walked into rehab around 11:00, I saw Roy and Christina, two of the people I had gone through rehab with. Both had very recently received new lungs, and they both looked like a million dollars before taxes. Seeing them so happy makes the effort seem more worthwhile. Furthermore, what they had to say really reinforced the value of the physical training we undergo at the cardiopulmonary rehab center. Still, I knew I was going to have a hard day because I had to do both arms and legs in my weightlifting regimen. That's because I knew I had clinicals the next day, so in order not to miss anything, I doubled up on my exercises. The workout went well.

At clinicals on Tuesday, I had to get blood labs, requiring a few more vials of my blood, then I had another chest X-Ray (seems like about one every month), then a full pulmonary function test. These are harder than you might think; I blow so long and hard I turn red and feel like I am going to pass out. Duke needs to stay abreast of my condition, though, so it is necessary. My results were not wonderous: I functioned at about 11% of expected capacity. Afterwards, I got to meet Dr. Hartwig. I can no more take credit for this than I can my shoe size, but I was blessed with a generous IQ. 3 sigma. (Generous and permissive, I might add. It has allowed me to do many stupid things.) So it is not often that I meet someone face-to-face whose intelligence blows me away. Dr. Hartwig was just such a man. Looked absolutely Ivy League, and virtually exuded confidence and deep intellect. He answered all our questions fully and completely, never for a moment making me feel that I was cutting into his schedule to do so. Dr. Hartwig is a pulmonary transplant surgeon, and likely to be my surgeon. Believe me, this gave me a great feeling of confidence in what must inevitably come. Then I met with a couple of research coordinators to discuss EVLP and non-heart-beating transplants, but I had some questions they could not answer. To my astonishment, they fetched Dr. Reedy, the head of research. He studied at Cambridge and has been part of the Duke Research team for a number of years. Again, I was blown away by another individual's intelligence. Twice in a row! He spoke to me and Andrea for about 45 uninterrupted minutes, explaining everything in great scientific detail. This was fabulous. We felt that he was tiptoeing around a couple of subjects at first because he didn't want to offend (you know; "evolution" and "animal research" . . . stuff like that), but once we delved into his subject with him, he realized that he was not speaking to the unwashed and he let his mind soar. Once again, I was overmatched in the brain department. Some of these Duke guys are smart. Really smart. I walked out of those clinics about two feet off the floor, buoyed with renewed confidence.

There was more to this day, though. For one, it was "Taco Tuesday" at the Lofts, and they brought out cartons of steamy hot taco fixins. It was fun, because we are starting to get to know our neighbors, and a couple of our favorites showed up. I have written about Sharon earlier. She was there, along with Tanya and, of course, Sarah, who puts these things together. Sarah manages one of the clinics and Tanya is an eye surgeon. Sharon had been flying in search of lungs without success, so she was a little tired. Nonetheless, we had a great time together.

Wednesday, Veterans' Day, was different, but really good. My workouts went well and I advanced the degree of difficulty in many of my exercises and on the stationary bike. It was a little disconcerting, though, to see ten or so young, well-dressed men and women marching around the track with us, trying a few floor exercises, and just generally looking way too healthy and grand. They were all pharmaceutical reps, and I felt like a bunch of bodybuilders had invaded the seniors-only nude beach. It was fine when all the other sunbathers were old and maybe not as pretty as they once were, but when the bus from Cannes stopped by, I felt like an unsightly medical speciman. But one excellent thing happened. My friend Les got called to the hospital.
We had planned to go the the Friday Center for Continuing Education at Chapel Hill with Les and Caroline to hear a talk by Christo Brand, the man who served as Nelson Mandela's guard from the time he was 19 and Mandela was 60. Clearly, Les and Carolyn had better things to do, but Andrea and I went and thoroughly enjoyed the evening.

On Thursday, I ran into Frank at rehab. Frank had had his transplant exactly five weeks before and he looked and felt, he said, quite fine. He lost about 20 pounds as a result of the surgery. I also met the Research Coordinator and gave her my signed consent for EVLP. But the most important fact about this day was that it marked the 28th anniversary of the day I met Andrea. We met at exactly 7:30 in the evening, and later, I took her to The Grill in Aspen. She was 24, and I was smitten. She ordered orange juice and Contreau, and we dined on rack of lamb with grilled asparagus and garlic potatoes, all washed down with a Chateauneuf du Pap. Every year, we dine on lamb to commemorate that event, and Thursday night was no exception. We went to an early dinner so Andrea could attend her Thursday workout class, and had plenty of time to talk, nosh, and reminisce about our life together. Our conversation was particularly poignent this time, because we knew we had great trials to come. I am grateful beyond expression for that evening we met so long ago that feels like fleeting weeks.

There is life beyond Duke! Our kitchen in the Keys is almost finished. John Decker, my friend from Asheville, has been staying at our house in the Keys for weeks doing this very difficult job. He somehow managed to hook up with Derrick, a resident of Islamorada, to help him. Derrick is a wood sculptor, but more importantly he remodels kitchens independently during his off season. He agreed to work for John on this project, and John tells me he is a meticulous and neat at he is, which is really saying something. John sends photos of his progress nearly every day, and I am awestruck. I trust John completely, and he gives me his best effort. The work is flawless. Here it is, from beginning to present:


We made arrangements to meet our friend Sam Guo at the North Carolina Museum of Art to see the most comprehensive display of M. C. Escher ever shown in the United States. We met in the early afternoon and spent over two hours moving through time from frame to frame. I am a huge Escher fan. I believe his meticulous, creative use of many media to explore many dimensions and mathematical schemas places his work far beyond even such masters as Picasso. The NC Museum of Art is world class in every respect, with the variety, quality and even the quantity of respected works you might expect to see in the greatest museums of the world, including the Louvre, the Prado, and the Museum of Modern Art.

Sam is a great runner, who recently ran the Boston, New York and Chicago marathons. This week he had already run 50 miles, including 20 miles that morning. What this translates to in terms mere mortals can understand is that he eats. A lot. So, immediately after our trip to the musuem, we met at 21C, a fabulous bar/restaurant/museum created in an old bank building complete with huge safes. I have a couple of Durham bucket lists: one for the foods I will not be able to eat following transplant surgery and one for great fooderies in Durham. One of the things I will no longer be able to eat is medium-rare hamburgers. So I ordered one, which, to my surprise, came as a huge double patty concoction so big I could hardly get my mouth around it. Afterwards, we went to get something to eat. As luck would have it, we were within walking distance of another double-bucket treat, the Durham Hotel with its roof top bar. Great panorama of the city, and fresh, salty oysters on the half-shell, another no-no following surgery. Afterwards, we went to get something to eat. Our first-ever Uber trip landed us at The Pit, famous for its B-B-Q. Excellent. Best of all, that helped tide us over until we could walk next door to the Fullsteam brewery, which provided us enough caloric content to struggle over to The Parlour, a crowded ice cream cafe with 18% butterfat flavors. Sam knows every place in town, and we really had fun together.

On Sunday, we met with Les and Caroline breakfast at the Refectory, recommended to us by Skip and Charlotte. I was still full from Saturday, though, so I opted for a cup of baked blueberry oatmeal, a fruit bowl and a glass of milk. Andrea plowed through a well-prepared dish of Huevos Rancheros. Remember, she runs too. Saturday she ran 7 miles before our adventure with Sam, so she can often eat more than me. Bill Wells, my friend from Asheville, had recommenced that I see "The Martian," so off to the theater we went. Bill, you hit the nail right on the head with that one. It was a great movie. Impossible to avoid eye-leaks at the end.

Sunday night was another Lofts adventure, "Cooking with Bourbon." About a dozen residents got together in the community center for a really fun evening of cooking, drinking, and eating. We broke into three groups, and each group prepared three dishes: bourbon wings, bourbon pastry puffs, and bourbon brownies. We chopped and mixed, stirred and blended, rolled, sliced, diced and baked for an hour or two, then relaxed to enjoy the fruits of our labors. The wings were great, although I must say our group's wings were the best because we doubled down on the sauce so ours were rich and dripping in an excellent bourbon sauce. The pastries were okay, although you couldn't taste a smidgen of bourbon in the final product. The brownies--everybody's brownies--were a disaster. The ovens weren't working well, and we ended up with a kind of bourbon-chocolate-flour soup. No matter. The bourbon tastings made up for anything that might have gone wrong.
--Updated 11/14/2015

What's going on? The third week of November Back to top

This week, at least 7 of my friends from Rehab got their new lungs after a long dry spell. These numbers tend to cycle, I am told, and it seems to be true. It wasn't all good news, though. The surgery is dangerous, and one of my workout buddies didn't make it. We all think he simply got to Duke too late, and he was too sick to withstand the rigors of the process. He was a relatively young man, with a wife and children.

My successes at the Rehab Center cycle, too. When the air is crisp and dry, I do very well. When it is humid, I have a rough time of it. This week marks the first time I ever had to stop for a couple of minutes in the middle of my stationary bike "ride." I was light-headed, dizzy, and couldn't breathe no matter how much oxygen I was sucking down. When it's tough for me, it's tough for my friends, too. Many of us struggled.

One guy had an even tougher time. He collapsed on the track and bloodied himself up pretty badly in the process. He went down like a ton of bricks. I didn't see it, but we all heard the "thump." He was immediately attended to by no fewer than 4 of the therapists, who monitored him carefully until the EMTs arrived to whisk him away in an ambulance. I am surprised that I haven't seen more falls. A lot of the potential lung recipients have little or no reserve and they haven't been physically active for some time because of it. In addition, quite a few are overweight. Combine all this with finding themselves in a very physical environment and doing their best to keep up makes for a dangerous combination.

This was the first day ever I took it a little easy on my walk. It felt cold to push myself around the track while this guy was sprawled in the middle of it surrounded by caregivers and equipment.

On Thursday, Andrea and I attended a very interesting discussion between Tom Donilon, who served as President Obama's National Security Adviser until June 2013, and Peter Feaver, a political science professor who is the Director of the American Grand Strategy program at Duke who served in the Bush administration. The major topics of discussion all stemmed from the very recent terrorist attacks in Paris, and ranged from a discussion of Donilon's duties as National Security Advisor to assessments of Putin's role in the Middle East, the balancing of American resources among the Far East, the Middle East, and Europe, the governance failings in the Middle East and their cause, and the Syrian refugee crisis. Projections of worldwide population disruptions were examined, too, along with how we balance our partnership role with our allies in the East with our singular role in assisting China in its global and economic expansion while attempting to minimize the conflicts that are likely to arise when a fresh new superpower rubs elbows with an old timer in an increasingly crowded world. Questions concerning North Korea came up, as did mis-assessments of Assad's ability to remain in power in Syria. Russia's pivital role in all this was analyzed in depth.

I did not expect this program to be as good as it was because American universities are not exactly hotbeds of conservatism. We were, in fact, surrounded by Hillary buttons. But Professor Feaver did an excellent job of balancing the discussion. Both the moderator and the guest were smart, polished, and articulate.

Only four questions made it from the floor. One was from a polisci doctoral candidate, another from a polisci student, and yet another from a representative of the military. The fourth and final question came from yours truly, and it was, "Earlier, sir, you mentioned Charlie Hedbo. Would you speculate as to why neither Mr. Obama nor any senior American official attended the ceremonies following Hedbo?" I got many nods from the audience. (Thanks, Henry!) Donilon did not like the question, although he was smooth as silk in saying for the first and only time that night, "I don't know." Dr. Feaver liked the question a lot, though, and expanded upon it to ask about administrative judgements and positions that had simply fallen flat. It was a stimulating, involving program.

Friday night was a little different. First and most important, my beautiful daughter Tracy married her beau of many years, Scott Preston. They married online so we could watch the sunset ceremony live from the beach at Key West.

Afterwards, Andrea stumbled across an open house invitation to the Duke Observatory for an evening of star-gazing. The observatory is not what you might picture an observatory to be; that is, a big domed structure containing a big telescope. Instead, it was an open field in the middle of the Duke Forest with permanent telescope mounts scattered about. Meade LX200 Schmidt-Cassegrain telescopes were firmly bolted atop most of the mounts. The telescopes ranged from ten to twelve inches, which allow great light gathering ability. My telescopes are all manual. I have to find stars by using R.A. and declination rings. Not so with modern scopes. Just dial in what you want to see and the instrument slews to put it dead center in the eyepiece. We looked at the ragged shadow edge of the moon, Uranus, global clusters, planetary nebulae, and just generally had fun soaring through the universe. Several children were there, and I had a lot of fun recounting the star lore behind the sightings. I knew the distances to each of the objects, when they were discovered and by whom, their role in Greek and Roman mythology, and little tidbids like, "that's the Andromeda Galaxy. Light from our sun, which is 93 million miles away, takes about 7 minutes to reach us. Light from Andromeda has taken two million years to get here. We're on a collision course with Andromeda, but I'm pretty sure it's nothing you have to worry about." This was especially meaningful for Andrea and me because we spent a long time star-gazing through my telescope in Aspen the night we met, and we looked at many of the same things. Makes sense that we'd see the same things; it was exactly the same time of year. Only then, there was no saga of the jacket to contend with.

Saturday found us having lunch with our old friend Mike Stuart, Professor Emeritus of Biology from UNC Asheville. Mike was one of our favorite, most challenging professors and became a friend of many years. It was Mike who introduced us to the Duke Lemur Center that we visited earlier this fall. We have had fun fishing together in the Keys, too. It was Mike who inadvertantly got Andrea into the medical profession as a result of a discussion we had in his car driving to a wookworking show in Hickory, North Carolina. He spoke of another mutual friend, John Bernstein, who taught Anatomy and Physiology at UNCA. John had joined "Doctors Without Borders" after he retired, and that discussion is what inspired Andrea to become a nurse. Mike was here to visit a friend with failing health and hopefully to visit the orchid show in Durham. I plead guilty to getting Mike interested in orchids when I suggested a purchase for him after our time together in the Keys. He fell in love with orchids, and now raises them damn near obsessively. We were also joined by his (and now our) friends Maureen and Bob.

We all decided to drive to the Sarah Duke Gardens to see the fall orchid display. Beautiful! Think 35,000 species and you get some idea of the variety possible with these living jewels. Some looked like shiny plastic, some like velvet. Some were smaller than your little fingernail, others would cover a dinner plate. We walked and talked about everything from the role of the Catholic Church in medieval times to the best time to visit the Lemur Center (May). I found Maureen to be a singularly intelligent person, and loved the way her thoughts rolled from her mouth perfectly shaped, perfectly formed. Bob was a 60's Duke graduate in Biomechanical Engineering. Right in the middle of all this we got a text message: Our friend Les had been called in for a fourth time. Hopefully, this won't turn out to be a dry run.
--Updated 11/21/2015

What's going on? Thanksgiving week Back to top

Excellent news. My friend Les got his transplant and everything went well. His nephew was in town for a visit on Sunday, so he provided a bit of support after the surgery by staying with Les in the ICU so that Caroline could go home and get some much-needed rest. Les' son arrived the next day, so this wonderful family is facing this ordeal hand-in-hand. By Monday, he was extubated and sitting up, and had already taken a few steps.

Sadly, we lost one the same day Les came out of surgery. These losses are harder for me because they are my friends, people I have walked with and strained with through weeks of rehab. Our average is .750 for the last eight at-bats. So what does that statistic mean for me? Nothing. It doesn't increase my odds, nor does it decrease them. Statistics apply only to groups, and they become meaningful only when the group is large enough to provide validity. For a thousand people, it's correct to say that one has an 87.3% chance of surviving the first year after surgery. But for me personally? I am Shrödinger's Cat, trapped in my box until it is opened. I cannot be 87.3% alive. I am a simple binomial expression, one way or the other. When the lid is removed, I will either be dancing or not. Averages mean nothing to the individual, for as a dear friend reminds me, human beings, on average, have one testicle and one ovary. The devil, it appears, really is in the details. Me, I have always preferred to dance.

Oops! Sorry, I fell into the crack between philosophy and science and couldn't get up. Meanwhile, back at rehab, the week started strongly, though I had to take an extra half-hour to finish up. Andrea prepared a nice salad, roasted chicken, grilled asparagus and sweet potato for our lunch and I enjoyed every bite, more so because I was once again down to my fighting weight. It took me an entire week to get there after the food-fest with Sam the weekend before.

When I was a kid, no more than eight, there was a Detroit-based soft drink called "Faygo." It had a little cartoon character as a spokesman and he used to say, "When you're too pooped to participate!" My grandfather loved that ad campaign. It never failed to bring a smile to his lips. On Wednesday, the day before Thanksgiving, I just ran out of energy. I was simply "too pooped to participate." One of the therapists approached me to see if everything was alright, saying that wasn't like me. I replied that I was thinking the same thing she was thinking: Maybe I should notch it down for a day or two. She told me that it certainly would not be a failure, especially since I was so far ahead of everybody else. "Maybe better than anyone we've ever had . . . ever!" That made me feel good.

Thanksgiving started well. I got a call from Les, who assured me that there were pretty nurses in Intensive Care and in Stepdown. He sounded fine. We had planned on having Thanksgiving dinner with Les and Carolyn and another couple, Carolyn (yes, two Carolyns) and her husband, but last weekend they both got new lungs. So, Andrea shopped for a nice turkey breast and found some great recipies and we enjoyed cooking together for a quiet meal. I can enjoy it even more because I am down to a good weight. Rehab is closed today, but will be open tomorrow from 8 till noon, so I'll have a chance to work off any excesses.

Thanksgiving ended well, too. Andrea prepared an excellent dinner for two, and we found a fair-to-middlin' alcohol-free wine to accompany slow-cooked turkey, sweet potatoes with mushrooms, collard greens, red-devil cranberry sauce and dressing.

Buddies at Rehab The Rehab Center was only open from 8 'til 12 on Friday, but it was perfect for me since it wasn't an overly planned day. Everybody was scrambled together, post-op and pre-op, so everybody was more or less free to do their own thing. I decided to see if and how fast I could walk a 5k. It was great! I made it in 56 minutes. Then I moved on to weights. I prepared for my personal program day by bringing my workout gloves, which enable me to lift heavier and more safely than otherwise. I did lots of heavy shrugs, concentration curls, and vertical rows. On the machines, I did tricep pushdowns, standing rows, heavy theraband exercises, back and cane extensions, and slow stretches. I added legs, too, since I had no desire to work out over the weekend. Hamstring curls, extensions, calf work and more finished out the weightlifting. Yes, I also managed to get 20 minutes on the stationary bike at a good, difficult resistance. I was pretty much the first one into the center, and the last one out. Those are my friends Roy, Avery, and Don in the photo. Roy and Don just got their new lungs. Avery, like me, is waiting.

After my favorite lunch, Thanksgiving leftovers, we visited Les at the hospital. He looked and sounded great, and again assured me there were lots of pretty nurses in Critical Care and in Stepdown. Me, I'll settle for just one: Andrea. We are very, very happy for Les and Carolyn.

I was right about my weight, and now, on Saturday, I am at my lowest, best weight since coming to Durham. As I write this, Andrea is sweating it out in her usual Saturday Bootcamp workout. She'll come back hungry and raring to go for the rest of the weekend. We'll get outside today, because the weather is balmy and beautiful.
--Updated 11/28/2015

What's going on? The first week of December Back to top

This week seemed to be more of a waiting game than others. I find myself growing impatient and anxious to get "the call." This is exacerbated by the fact that many of my friends have successfully undergone their transplants. Les, for example, is already back in the rehab center, happily walking his laps and looking great. I am happy for him, but I definitely want to be walking with him instead of just reporting his progress.

In one of my first posts, I mentioned Stan and Bettye Sue Kline. They flew back to Durham this week for some post-transplant testing, so we had an opportunity to enjoy a tasty dinner together at one of our favorite restaurants on Sunday evening. This just happened to be their anniversary, so I brought along a bottle of alcohol-free wine so that she and I could enjoy a glass along with our less restricted spouses. We had a very fine time and Bettye Sue, I am happy to report, is doing very well.

Monday was crazy busy. I had clinics in the morning--blood labs, chest X-Ray, pulmonary efficiency tests--and finished up just in time to race to the rehab center, which I finished up just in time to return to "Duke South" for a pow-wow with another pulmonologist, Dr. Palmer. By that time, Dr. Palmer had gotten the results of my spirometry, so we had something concrete to talk about. Namely, that my total lung capacity and my ability to exhale hard and fast had both degraded somewhat significantly. In my case, this is not necessarily bad news because these results are fed into the enormously complex algorithm that results in my LAS score. The higher the score, the more I need lungs; the more I need lungs the higher I am pushed up the waiting list. It used to be that you moved up the list based solely on the time you were listed, but no longer. Now, your score (along with other physiological factors such as chest volume, blood type, etc.) determines your eligibility.

I was reminded once again about the Duke Transplant Center/Patient partnership this week, too. I read all the test results, and noticed that in my last chest X-Ray there were suspicious-looking shadows on my lungs that could possibly be attributed to my nipples. Yet for Monday's chest X-Ray, the technician was proceeding normally. So, I requested nipple markers, which they stuck on with nary a raised eyebrow. Turns out, this verified that the shadows were indeed nipple-shadows, so I was off the hook. The guys at Duke are really good, but it helps if you track what's going on with your own diagnosis and treatment.

Night comes all too quickly at this time of the year, and Andrea, with her keen mind, gets much too bored settling down to watch Netflix every night. So, she finds interesting presentations and lectures to attend. This week was no exception. She attended three different sessions. The first was a panel discussion of nature preservation and the issues concerning keeping people off or letting them on the preserved lands. Panelists included an ecologist from Madagascar and an expert from China, among others. The second presentation was a legal analysis of the diaspora of refugees from the Middle East into Europe. Many of these people are traded much as slaves in the hands of those who would profit from the scary circumstances surrounding these frightened, helpless refugees. How should these people be protected? What are our responsibilities, if any, to them? How do we even determine the extent and severity of the abuse they may be subjected to?

Andrea's third presentation was particularly interesting to me. She attended and participated in a presentation and discussion led by the President and CEO of the Pew Charitable Trusts, Rebecca W. Rimel. The topic had to do with gaining bipartisan support in a partisan environment, but the point we were left with struck closer to home. In a casual conversation with her sister, Andrea had earlier learned that in some countries, such as Austria, becoming a doner is the default position. One has to opt out if one does not wish to become a doner. This is true in some states as well.

I emailed Ms Rimel about the possibility of The Pew Charitable Trusts taking an interest in nudging the United States, and indeed, the world in the direction of default donership. To my delight, this is the text of an email I received from her the very next morning:

Dear Mr. Rushlow:

Thank you for taking the time to write, and I'm very glad to hear your wife enjoyed my presentation at Duke. Indeed, it was a delightful and informative evening for me as well.

As you mention, organ donation has the power to transform the lives of recipients and their loved ones. I started my career in health care as an emergency room nurse, so I certainly appreciate the critical need for organ donors. In fact, I shared your email with Sue Urahn, executive vice president of government performance at Pew, who supervises our work in a variety of areas, including drug and medical device safety and antibiotic resistance. Sue and her team will assess whether there's a role for Pew in this space, and we will reach out to you once we have more information.

Mr. Rushlow, thank you again for contacting me and sharing your personal connection to organ donation. I look forward to following up with you in the near future, and you have my best wishes for a successful outcome to your courageous journey.

Sincerely,

Rebecca


You cannot imagine the pleasure it gives me to think that in some small way I may have set a wheel in motion to help others like myself who rely on the generosity of doners and their families to live.

On Thursday, Jim and Becky (my secondary caregiver) stopped by on their way to the outer banks for a weekend of birding. We had a great lunch at the Nosh and as usual a very stimulating conversation, this time centered on politics. Jim, Becky and I often vote on opposite sides of the fence, but there are many issues where we find ourselves in complete agreement. I scored a double that day: 1) I got a medium rare cheeseburger (no can do after surgery!) and 2) a big cookie, a gift from Becky.

Friday was also a strong double for me. I walked a fast 5k at rehab and did well on the stationary bike and floor exercises too. This is very rewarding to me.

But even better, Andrea found that the Duke Chorus was presenting Handel's Messiah with full orchestration and featuring professional soloists. This is--and has been since seventh grade--my favorite choral music. It was especially appropriate for Andrea and me because very shortly after we met I took her to the old Wheeler Opera House in Aspen to see the same performance twenty-nine years ago. I remember that snowy night very well, and I won't soon forget the perfection of last night's performance. The soloists were world-class, and had been flow in from all around the country for this performance. A trumpeter accompanied with the purest, sweetest notes I have ever heard from that instrument. Liquid gold. The chorus, which performs all around the world, was impeccable.

Nothing would do but late-night appetizers at a cozy watering hole afterwards. Andrea looked georgeous and I can only say that if I have to wait, this is the place to do it.
--Updated 12/05/2015
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What's going on? The second week of December Back to top

This was a hum-dinger of a week!

Mel and Tracy In these posts, I usually report chronologically. But this was a very special week, so instead, I will put things in order of importance.

By far and away, the most important event of the week--and of my relocation to Durham--was a surprise visit from both of my daughters, Tracy and Melissa. I was busily working on my computer on Saturday morning when I finally became aware of an insistent "psst! psst!" I looked up and two beautiful heads were poking around the corner with big happy smiles on their faces. I was completely blown away. I hadn't realized how badly I missed them until I was crushing them with hugs.

Andrea had been in on the surprise, which they had planned since Thanksgiving, but I didn't have a clue. They could only stay overnight, but that just made our time together even sweeter. We chatted happily until it was time for lunch, and we drove to the Nasher Art Museum which, as you will read, I had only discovered earlier that week. The Nasher has a very good cafe, and we enjoyed an excellent brunch. Afterwards, we poked around the museum for a couple of hours before jumping in the car so I could show them where my time was spent here: the Duke Medical Pavilion, the Clinics, the Hospital. It was a stunning day with temperatures in the low 70's, so we decided to drive over to the Sarah Duke Gardens before we drove them around the campus. Just as I was pulling into my parking space, we ran into Les and Carolyn as they were leaving the gardens. Les looked great only 23 days after his transplant, which gave the girls increased hope for a good outcome to my surgery.
Tracy, me, and Melissa Les, Carolyn, Melissa, Tracy, me, Andrea Lunch at the Q

As you may have read, we have found that Local 22 provides a very nice informal atmosphere where people can talk and pass small servings around for sharing, which is exactly what we did. But their eyes were beginning to droop (after all, they had been up and about since 5 that morning) and it was time to take them to their hotel. I went to bed very happy, knowing that I could see them again first thing in the morning.

On Sunday, we had a good, healthy breakfast together at the apartment and drank about a gallon of coffee while continuing our nonstop talk. Melissa presented us with a Christmas present--a Levono stick computer and a folding keyboard so I could fuss with the internet using the television in my bedroom after surgery--but as nice as it was, it was nothing compared to the perfect gift my girls had already given me just by showing up at my door. Lunch at the Original Q Shack was over too quickly, and it was time to drive them to the airport to collect a few more hugs before saying goodbye.

The second most important thing was that I got a call! Okay, it turned out to be a dry run, but it was very exciting! Remember "lungs in a box"? Well, I got a call from one of the researchers, who wanted to know if I was still committed to the program. "Of course," I answered. "Well," she continued, "the next call you will get will be from your Transplant Coordinator. We may have some lungs for you, and they are in transit."

Just as I was about to sit down to a hot plate of chicken thighs that Andrea had prepared for lunch, we got the call. So much for chicken; there was to be no eating or drinking until further notice. Off we went to Admissions. Shortly after, I was shunted to a pre-op area, where I was prepped for surgery. Chest X-rays, 11 vials of blood for real-time testing, and EKG, reviews of drugs, nebulizers for inhaled antibiotics, sub-lingual Prograf to supress my immune system, interviews with the anesthesiologist, interviews with the nurse practicioner, and shaving me as smooth as an egg. I brought a book knowing that the wait could be long, but I needn't have bothered. There was no time, even though I was there for more than seven hours. Dry run. Better luck next time.

Now that we've got the important stuff out of the way, back to chronologies. The previous weekend, Andrea and I discovered the Nasher Art Museum. In many ways, it is the perfect place for a short visit. It is not intimidatingly huge, like the North Carolina Museum of Art in Raleigh, so you can choose one or two of the three main exhibit rooms to wander around to enjoy their eclectic offerings. One major area includes art and artifacts divided into several categories, such as South American and African Indian and Native Art, medieval, primitive, modern and religeous art, pre-columbian Latin American art and artifacts, American Indian art and artifacts, and more. You can do a decent once-over in a couple hours, then enjoy a very fine lunch in a wonderful cafe before returning to either a different exhibit area or revisiting areas you found particularly interesting.

Rehab was slightly more interesting than usual, if only because the powers that be called for another six-minute walk test to verify the data collected the week before during my clinical pulmonary function tests the week before. There are built-in conflicts in this testing. One hopes for (and expects) improvement as a result of all the hard work put into the workouts, but one hopes for degradation in the distance walked so as to raise your LAS. The distance I walked was considerably less than what I had been able to walk during the last test, so my score should go up, increasing my chances of finding a donor. I took the test on Wednesday, but even though it is a matter of life or death to me, no one has bothered to send the results to my Transplant Coordinator as of Monday the 14th. I suppose I'll have to put a bug in someone's ear.
--Updated 12/15/2015
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'Twas the week before Christmas . . . Back to top

and still I did wait.

A couple of my friends fared better, though. David, a big fellow who owned a pest control company and no doubt inhaled lots of toxic chemicals, fairly zoomed through rehab and into the hospital for his lungs. A couple of others did well, too. I saw Caroline back at the rehab facility after her surgery, and she looked fantastic. She said the surgeon told her that her new lungs were a "perfect fit", so her surgery went very well and very quickly. She was in and out in four hours, and walked a mile within a few days. Inspiring.

Rebecca Crouch, the Director of Physical Therapy, retired after 36 years with Duke. She had quite literally designed and developed the rehab concept that helps so many through their surgery today. Rebecca and I got along very well. She could see that I knew my way around weightlifting equipment, so she granted me far more freedom than many of the other therapists who were more bound to rules that would have held me back. Anyway, they threw a little shindig for her on Thursday afternoon, so Andrea and I decided to throw in a case of bubbly champagne substitutes: white grape juice, apple cider and even sparkling cranberry juice (which might be good with vodka, by the way, with the addition of a little lime to tone down the sweetness). There were goodies to munch on, like doughy chicken nuggets, veggies, fruits, deviled eggs, cookies, cake--you know, the usual party fare. There were little speeches about the early days, and lots of gratitude expressed about her ability to attract and lead good people and so on, but at the end I realized that nobody had said a word about the real focus of her career; namely, the patients.

I did a quick mental calculation and figured that she and her programs had helped no fewer than 10,000 people enjoy an improved surgical outcome, and I could not let this go unsaid. So before everyone headed for the door, I chimed in with a little impromptu speech of my own. While there were others who had enjoyed the privilege of knowing Rebecca for many years and who saw her from their viewpoints as bosses or fellow staffers, I (in my self-appointed way) spoke for thousands who knew and respected her and for the hundreds who might not be alive today except for her caring efforts. I kept it very short, and thanked her on behalf of that multitude. I guess it went over reasonably well, because I got many thanks that evening and the following day.

The real fun didn't happen until the weekend, though. Christmas is really a time of family and friends, isn't it? Just the previous weekend I had been warmly suprised by the visit of my daughters, Tracy and Melissa. This weekend we looked forward to seeing our friends Heinz and Dawn Grohs from Asheville. They had come to see us the first week in November, too.

We had a great weekend planned. To begin, we met at the Iris Cafe of the North Carolina Museum of Art in Raleigh, where we had seen the Escher exhibit a few weeks earlier. I had been advised that the cafe was exceptional and that reservations were a must. Sure enough, the place was filled. Reservations were definitely in order. But the food and service took a backseat to the cafe at the Nasher, which I wrote about the week before. Both Heinz and I had to send back the hard-poached eggs from our otherwise interesting Benedicts, and the exchange was not well-handled by our inexperienced waiter. And while the potatoes at the Nasher were sheer perfection on both our visits, the poor potatoes at the Iris had lived the last half of their lives under an unforgiving warming lamp, so they died a rubbery death. Dawn had a wonderful burger, she said, and Andrea thought her Heuvos Rancheros was as good as she had ever had, so it was not a total loss. Nor could it have been. It was not the food that was most important, it was the company.

Afterwards, Heinz and Dawn left to see Escher while Andrea and I chose to remain in the permanent exhibit area. Believe me, their collection and its housing are world-class. This museum could compete with any in the world. We took a tour, then doubled back through the areas that interested us most. After three hours or so, Andrea and I decided to check out the Angus Barn, a Raleigh eatery known both for its steaks and its extensive wine list. What a hoot! There must have been a thousand people there. This was Carolina kitsch at its best: overdecorated, overstuffed and happy as hell. We squeezed our way into a corner of the Wild Turkey Bar and Andrea sipped a very good cosmo as we watched hundreds of happy people pitching in to raise the level of holiday cheer another notch. I asked for the wine list, and was presented with a notebook of perhaps 100 pages featuring Romanée-Conti priced upwards of $15,000 a bottle. (Yes, a 750ml bottle.) It wasn't quite Burns Steak House, but like the NC Museum of Art, this place could hold its own.

But soon we were off to Durham, where we had planned to meet Heinz and Dawn at Juju's, an asian tapas restaurant. We happily munched our way through the unique offerings, pausing between words to relish things like "crispy Texas wild boar dumplings" or "fatback Wontons." Everything was great at our hand-chosen table (we had picked it the week before), but I thought we might enjoy a cheese plate and an excellent port at the Vin Rouge, located nearly across the street. Ben the bartender met us and served us like old friends. The cheeses represented France's best, and the port was the perfect finish to the evening.

The next morning, we met at the Washington Duke Inn and Club for breakfast. What a beautiful setting. The Christmas decor was perfect, and the whole place reeked of class. Mahogany and deep leather lined the Bull Durham Bar, and the hallways and dining areas were resplendid. The food matched the quality of the venue and service. But finally, we had to say goodbye. Our friends have a busy social calendar, and they had to prepare for their evening back in Asheville, four hours away.

But as you can see, our Christmas season was indeed filled with friends and family. Thanks, kids, and thanks, Heinz and Dawn, for making it so. Merry Christmas!
--Updated 12/20/2015
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Christmas Back to top

Christmas this year was kind of dissociated, out of kilter. It made us keenly aware of our isolation and extremely grateful to have each other.

The isolation was heightened by the fact that I was suffering through a cold. "So what?" you ask. To the world at large, the common cold is no big deal (as unpleasant as it may be). But to me, it can not only be life-threatening, but worrisome in other ways. The holiday season is normally the most active time for transplants, for many reasons. But not for me. Not with a cold. And Christmas is a time to share with friends and family. But not for us. Not this year. Although we have made wonderful friends here, most are either waiting for new lungs, like me, or healing. I cannot risk infecting either group, especially those lucky enough to have received their life-giving gifts. Heck, I was too sick to see my buddies at rehab most of the week. I only went twice, on Monday and Wednesday. And family seemed far, far away, even though I had so recently seen my daughters Tracy and Melissa.

We spoke to everyone on the phone, of course, and we could envision the happy mix of family, friends, food, and cheer. We could almost smell Randy's incredible lasagne and see ourselves playing dodge 'em with the dogs while trying not to spill our drinks. Same with Austria. We Skyped the family in Klaus, all gathered around the real-candle tree, exchanging gifts, eating one of Hans' great dinners. (Funny, but all the girls in my family and Andrea's married guys who do most of the cooking, except for Andrea herself. Tracy's husband, Scott, is a terrific cook, as is Randy, Melissa's husband. And as many times as I have eaten in my sister-in-law's home in Klaus, I cannot remember ever once eating anything cooked by Brigitte.) Skyping was great, but it made us homesick.

I suppose there was another factor involved: in our quarter century of marriage, we have never spent so long a time in one place, unable to travel and explore. We are tied to a half hour radius of the medical center here, and we long for the world.

But no matter. We still have each other. And as it happens, that's all we really need for a wonderful holiday.

We had not been able to shop for presents. The spirit wasn't there. And without the spirit of giving, presents didn't seem very important. But we were all in for one extravagance. We had dinner at the Washington Duke Inn and Club, and it was perfect. We stopped at the bar, the Bull Durham, and soaked up the rich atmosphere of dark mahogany, polished brass, and tasteful holiday decorations. Since I was not a candidate for transplant at the moment, we both enjoyed a drink before we were seated.

The menu was sheer perfection, and the service was as close to white-glove as I have experienced in years. A parade of delicacies crossed our table, all accompanied by a crusty old Chateauneuf du Pape that we decanted to make an already great wine distinguished. The pace was leisurely, and the piano in the background was soft and happy. There were five courses, every one of them mouth-watering. I chose a lamb shank, and Andrea went for an 50-day-aged NY strip. As usual, we shared everything 50/50, so it was like ten courses, not "just" five.

Our conversation was as happy as ever. We spoke of our year together, and shared our hopes for the year coming. We spoke of family, of friends, of travel. After being with this lovely lady for almost 30 years, I am still captivated by her beauty, still smitten with her love. So as you can see, Christmas turned out to be as fine as it could be, despite my whining about isolation and dissociation earlier.

Lamb Shank on Risotto Aged NY Strip Our Table Chateauneuf du Pape In front of the tree
Dessert number 1 Dessert number 2 Doug and Lee Andrea, Lee and Eva Andrew whomping Doug

We did get more cards than usual (Thank you! It mattered.), and were even surprised with unexpected, thoughtful gifts. Our most festive day, though, was the day after Christmas. Our great friends Doug and Eva Scott surprised us with a visit from Fredricksburg, Virginia, who kept the scene joyeus and lively with three of their four children: Sophia, Alma and Andrew. Marina is is school in Utah, so we missed her, but what a great time we had! We reserved the Commons Room at the Lofts so the kids could shoot pool, play shuffleboard, or watch any one of several TVs. We ordered a couple of gourmet pizzas, and talked the afternoon and evening away. Suddenly, the isolation was gone. We were with friends that I could cheerfully infect with my cold. There were dogs to trip over, boys to hear yelling (yes, I am including Doug), and pretty girls to hug. We went to bed content and excited about Christmasses to come.
--Updated 12/27/2015
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Early January Back to top

In like a lion, out like a lamb: I find that keeping my personal journal online feels tedious at the moment. That makes sense. The wait itself feels ever more tedious.

Thank goodness for rehab. On days with no rehab--Saturdays, Sundays and holidays--it feels like we are just killing time. Waiting for the call. On rehab days, I have a place to go, goals to set, "records" to break. On other days, we do our best to find interesting activities. And we do a pretty decent job of it, all-in-all. But my restaurant bill has been mind-boggling. What worries me a little is that even the rehab sessions are less stimulating.

Part of it is due to the fact that the place is run by bureaucrats. Even if the place is almost empty, they feel it important to get you started and out of there on time. Want to get an early start on the bike? Somebody is likely to "remind" you that your time doesn't start "for another 10 minutes." Same if you spend a little more time completing your lifting. Makes no difference that none of the bikes are in use, or that nobody uses the freeweights in the area where you are working.

I understand this, at least to a degree. Like all bureaucrats, they're "just doing their job."

There's another reason for the increasing tedium. Our once huge class has dwindled to almost nothing. Almost all my buddies and lots of people I didn't even get to know have gotten their new lungs. I am happy for them, but I am distressed that I have gotten only one call, and it was (obviously) a dry run. Bottom line is, I haven't felt very optomistic lately, and this has no doubt contributed to the fact that I haven't kept this post up for a couple of weeks. It's nice that a few people have noticed this and have inquired as to my absense. It makes me feel like someone is paying attention, that somebody cares. I envy you guys, out there running your lives as you should, fixing the things that are wrong and enjoying the things that are right. I always felt that if something was out of kilter in my life, I could change it. Working hard at it would surely solve the problem, eventually. Whatever its nature.

But that's not true in this circumstance. Working hard won't make "the call" happen one minute sooner. If you don't like it, the only thing you can do is quit. That is not an option. So I feel that many irrecoverable months have been taken from a too-short span. Waiting. Just waiting.

Andrea and I have continued to enjoy world-class dining here in Durham, which has helped the situation enormously. Not many lectures or Duke programs over the Christmas break, though, so we missed that aspect of our stay here. An the weather has been a bit spotty. Lots of rainy, chilly days with no hint of sunshine to break the cloud-filled days. But our weekend dinners are culinary extravaganzas. One night might consist of ice-cold meaty oysters swimming in brine, followed by sweetbreads, truffled frites and mussels steaming in a bourgogne sauce. We hardly ever order big entrees. We much prefer a variety of tastes and textures . . . and that's what we have been doing.

I am hanging in there. My turn will come, and I will be as well-prepared as I am able.

--Updated 1/11/2016
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Mid-January Back to top

Dying on the Operating Room table holds less terror for me than becoming entangled in the clutches of a well-meaning bureaucracy.

The week started fine. On Sunday, we went with our friends Les and Carolyn to watch Star Wars, and afterwards took them to the Firebirds Wood-Fired Grill in celebration of Les' first real outing since his transplant. I am beginning to enjoy alcohol-free beers, and my salmon-topped salad was scrumptious.

The problems all started on the morning of January 12. In the course of my discussion with Dr. Hartwig a couple of weeks before, we concluded that it might be a good idea for me to follow up with an "EP", or electrophysiologist, just to dot the i's and cross the t's on a consultation I had had in 2012 concerning treatment for my occasional Atrial Fibrilations. An electrophysiologist, in simple terms, attends to the signals that cause the heart muscles to contract flub-dub, flub-dub, flub-dub. Sometimes I would get Atrial Flutter (flub-flub-flub-dub, flub-flub-flub-dub) and sometimes I would get Atrial Fibrilations (flubdubflubdubflubdub . . . flubdub, flubdub . . . flubdubflubdubflubdub).

As fate would have it, I was in A-flutter the morning of my visit with Dr. Thomas, the EP. We examined the EKG together, we discussed the origins of the signals that instructed my heart to beat the way it beats, we discussed the differences between AFibs and AFlutter. It was an extremely fine, instructive session, and I left in an excellent, enthusiastic state of mind. I even had time for rehab!

Rehab went very well. I was strong on everything. But at the end of my session, I checked my pulse for some reason. It was at 156. No big deal: There is a med I take that makes AFibs go away within a half-hour, usually. But I did ask one of the therapists to double-check my heart rate because the device I used is not all that reliable. "Let's put you on an EKG to see what's really going on," she said. This had happened once before at the very beginning of October. I commented on it in this blog. No biggie; just wait the half-hour and all's well.

Unless, that is, you have asked a person too junior to rely on good judgement instead of a complex algorithm that says, "If AFibs and rate>150, call transplant coordinator." Transplant coordinator, an RN, also relies on an algorithm that says, "send patient to Emergency Department via EMS!" Off I go, whisked away on a totally unnecessary journey. As I predicted, based on their EKG my heart had settled down by the time they had me strapped into the back of the ambulance. No matter. Their algorithm says, "Proceed to ED!" Once in ED, I am again hooked up to an EKG. I ask to see it. It is perfectly fine, a carbon-copy of the EKG I had taken that morning with Dr. Thomas. But I wait. Finally, a nurse comes round to tell me that they have located a room for me. I don't need a room; I am perfectly fine. I tell her that. I ask when the Doctor can see the EKG to confirm. "Oh, the doctor has seen your EKG and she's fine with it." Great! Can I go home? "Yes. You're good to go!" is her cheerful reply. So, I leave.

Next day at rehab, I am strong as a horse. Great workout. But the following day, Thursday, I am intercepted by the therapist who just couldn't wait to call the coordinator. "Call your coordinator," I am told. I do so.

I discover, to my astonishment, that I am now personna non gratia to the Duke team that supposedly has my back. I am in deep doo-doo. I have left the hospital without actually seeing the doctor! I am non-compliant! My "team" now feels that my "heart condition" (which they have known about since July and checked on every month thereafter) has to be fixed before they can consider me for transplant. I am de-listed! I cannot even attend rehab.

I am so angry and frustrated I am shaking. I feel betrayed. But there was a lesson to be learned here, and this is it: Never assume that pleasant, professional interactions with someone equates to friendship, and even if you like the person you are dealing with and they like you, don't assume that that means that they will step one inch outside the box to be your advocate. They are merely doing their job. They check their checklists and complete their paperwork in such a manner that they cannot be criticized in any way. They are protecting their jobs. They ensure the livelihood of the algorithm. In that sense, they are merely bureaucrats. They are there neither to help nor to hinder you. Nothing to feel betrayed about.

Next step? Another EKG on Thursday afternoon. Result: beautiful sinus rhythm.

Hell with it. If I am not listed, there is nothing to tether me to a half-hour radius from Duke Medical Center. Andrea and I jump in the car on Friday morning and haul ass to Asheville. We'll pick up the winter clothes we should have brought in the first place, we'll visit some friends, we'll check on the house. We will not worry about every phone call, every email, every communication that could tell us they were ready to outfit me with new lungs.

We arrive in Asheville, and promptly head over to one of our favorite little restaurants for a burrito. While there, I get a call from Dr. Thomas. He, God bless him, says, "you were right. You read your EKG perfectly correctly. There was no reason to keep you in the hospital. You were on the merry-go-round that is so hard to step off. I have discussed this with your transplant coordinator. I have discussed this with the head of the transplant department. We've decided on a medical course of action: We'll fix the AFlutter with Ablation and get you back on track." I am completely at ease with what he has said, and I understand the ablation procedure perfectly. It is relatively non-invasive and quite effective. I am, at that point, ready to kiss Dr. Thomas right over the phone.

The house is fine, and it feels wonderful to be there. The plants are thriving, our mattress is inviting, our flannel sheets are cozy. We do the things we love. On Saturday, I get a haircut, we drive downtown to eat an absolutely perfect light lunch at the Posana, where we are served Avocado Toast with fresh thin-sliced salmon and fried capers followed by the best Kale Salad we have ever found anywhere. We call our friends Heinz and Dawn, and drive over to their beautiful new home to chat and watch the first half of the Patriots game against Kansas City. We go to a new restaurant for a great steak and some questionable fish. The next morning, we have a wonderful brunch with our friends Henry Stern and Jim and Becky Petranka, whom you have met before in this blog. We go home, pack things, straighten out files, tend to plants, and enjoy a few hours together in our cozy Asheville home.

I am not off the treadmill yet, by any means. Before I can get re-listed, I have to get the ablation therapy, and before I get the ablation therapy I have to be on blood thinners for three weeks, so I have to resign myself to the fact that there is no hope of a transplant for another month. Oh, and now I have discovered that they want me to undergo a psychiatric visit this afternoon, presumably to see if all this nonsense has thrown me off kilter.

It hasn't. Maybe we'll get to see the new Keys kitchen or go on a short cruise before I have to be back at Duke. I'll keep you posted. Promise.

--Updated 1/19/2016
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the third week of January Back to top

The psychiatric session turned out to be both pleasant and instructive. I enjoyed meeting with Dr. Ingles, a bright, personable PhD who had clearly reviewed my case and unlike many, was able to get to the point without a hint of hemming and hawing. It was as I had expected, generally. She conducted a very careful review of my side of the story concerning my exit from the ED the week before. No surprise there. But I was surprised to hear her ask about rehab. Hadn't I been told to back off a little? That I was working too hard? Now that was interesting.

You see, the last person who spoke to me when I left rehab was someone I like very much. Her name is Jen and she is a LCDR in the Naval Reserve, so right away we have a lot in common. She touched my arm and said, "Don't worry. Sheila's got your back." Well, that was good to hear. Sheila runs the place and meets with the transplant team every Tuesday to discuss my progress as well as everyone else's. Remember, I had been told by the Director who retired from that facility after 36 years that I was the best she had ever seen, so I felt that maybe somebody really did "have my back." It is true that Sheila had suggested to me once or twice that if I was having a bad day (those days happen with my condition) I could slack off a bit, especially since I was so far ahead of the curve. Indeed, I listened to her and had in fact toned it down a notch on particularly difficult days.

So imagine my surprise when my "working too hard" led the psychiatrist to explore non-compliance on my part. If I worked too hard at rehab, the reasoning seemed to go, wasn't that counter to the "medical" advice offered me by the therapists? Did this relate to the gray area surrounding my leaving the ED, which could possibly raise a flag about taking actions "Against Medical Advice?" Would I take my meds? Would I come in to Duke to complete my regular testing after the transplant? Well, so much for hard work, the hallmark of my entire life. Here, hard work is a weakness to be overcome. It flies counter to the chant of the bureaucrat: "Stay in the middle, get in step, say nothing." My discussion with the good doctor nailed the lid on the coffin of equating friendship and professionalism with advocacy.

I am fine with this, by the way. I have no complaint. Nobody is trying to hinder me. Heretofore, I had simply defined friendship as a willingness to step out on a limb for someone. I still do. I simply had to adjust my thinking to encompass the idea that I was not surrounded by friends here, no matter how friendly our relationships. I am, rather, surrounded by professionals, people who attend and bow to the algorithm. This is not a bad thing. It makes them predictable. And do I, in fact, really want an RN or a physical therapist to be making medical decisions for me? No, I just want them to do their job.

That afternoon I met with a transplant dermatologist. You see, when you are topped off with immunosupressents, skin cancers are likely to flair. Happens a lot. And three years ago I had a little squamous cell carcinoma removed from the tip of my nose. My nose is still sensitive. "Friable", as the dermatologist described it: marked by erosion and bleeding. She was terrific. Another Duke pro. She decided that I would look better with a flatter nose, so she immediately attacked me with a razor and sent a sample off to pathology. We'll see. Better to have it taken care of beforehand than afterwards.

And that offers the perfect segue into what they are doing with respect to my AFibs/AFlutter. Taking care of it beforehand rather than risking a bad surgical outcome afterward.

The very next day, I went through the full set of clinicals: blood work, chest X-Rays, pulmonary efficiency tests, and a doctor visit. This time, though, the visit was with Dr. Reynolds, who heads up the transplant program. Everyone I spoke to told me I could speak frankly and honestly with Dr. Reynolds, so I asked the questions I needed to ask: Am I being punished for seeming to be non-compliant? Not in the least, he assured me. What exactly is my status? I am temporarily off the transplant list. Is there any way to expedite the scheduled ablation so that I won't add another tedious month or two to my wait? "I'll discuss it with Dr. Thomas," he said. Bottom line: Both the doctor and I wish that Duke had taken care of this problem (if it is a problem) three months ago, rather than now. I found that I liked Dr. Reynolds a great deal. He was approachable, straightforward, and very knowledgable about my particular case. Let's hope we can get past the Aflutter ablation quickly and get me back on the list.

One of the tedious things about this process is the frustration over lines of communication. In Asheville, I could call my doctor's cell or set up a quick appointment and we could discuss whatever needed to be discussed. There was a wonderful give and take, and I was part of the decision process. Not here. For example: On Tuesday, the 12th, I visited Dr. Thomas. On Friday (I think) he and my Lung Transplant Coordinator and Dr. Reynolds spoke about the confusion concerning my leaving the ED and about a medical course of action for me. A prescription for a blood thinner, Eliquis, was phoned in to CVS by Dr. Thomas' office. CVS calls me, says too bad, this prescription requires "prior authorization." They fax Dr. Thomas' office and on at least two occassions, the 19th and the 21st, ask for the authorization they need. They got no response from Dr. Thomas' office. It is now the 24th. Nothing has happened. I cannot get the prescription. My Lung Transplant Coordinator has not returned my calls. Dr. Thomas' office has not returned my calls. Unless I take the Eliquis for three weeks, I cannot undergo the ablation, so if I don't start soon, my scheduled (I think) appointment for the ablation becomes moot. I am supposed to see a PA Electrophysiologist on Tuesday, but I have no idea why. Neither did Dr. Thomas' nurse. Neither did Dr. Reynolds. But the appointment has not been cancelled, I cannot get my meds, and I cannot figure what the hell is going on. See why the wait becomes tedious?

I never understood why after somebody died in a medical setting their eulogy inevitably included, "He was a fighter!" Now I understand. It is not that he or she bravely fought the disease itself. How can you? The battle, it turns out, is with the medical establishment, the insurers, and the administrators. You simply cannot give up, and there are lots of them.

--Updated 1/24/2016
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the last week of January Back to top

Things are looking up!

It is Wednesday as I write this. Yesterday afternoon I had my visit with the P.A. Electrophysiologist and discovered that I had not been dropped into a crack. I was simply not in the communication loop.

The ablation was scheduled as expeditiously as possible. Before the procedure, three weeks of anticoagulation are required. I had assumed, incorrectly, that what that meant was that the blood thinner they had selected, Eliquis, built up over a three-week period and would therefore require a similar amount of time to exit my system. My worry was that I would not be eligible for the transplant not only for the weeks prior to ablation, but that I would be in danger of "bleeding out" for some time after the cessation of the medication. But I was wrong; that's not how it works. Eliquis is quick in, quick out. The reason they insist on three weeks of anticoagulation is to eliminate (dissolve) any existing clots prior to the ablation. That process takes three weeks. The danger of throwing a clot (thus causing a stroke or a pulmonary embolism) is at its greatest for the 30 days following the ablation. So, okay; I've got to take the Eliquis for three weeks and I am scheduled for the ablation on February 17th.

As for getting the medication, as soon as the P.A. found out that nobody had followed through on the "Prior Authorization" paperwork, he got up, left the room, and before he came back a package with all the meds I would need was placed in my hands by one of the nurses. I was very impressed. The P.A. is a guy who gets things done. My kind of guy.

Speaking of which, I had to have a physical examination within 30 days prior to the ablation, so he took care of it on the spot.

So there you have it, gang! Ablation on the 17th, back to rehab (and presumably listing) on the 18th or as soon afterwards as is medically and administratively practicable. Now that I understand what they were doing, I think I see that they really are doing their best to make sure a small problem now doesn't turn into a medical disaster following the surgery.

That evening, Andrea and I drove to a delightful little downtown restaurant to dine with friends from the Lofts. It was exactly the kind of dining we love: little tastes of this and that. It was a tapas restaurant--the Tapas Taverna--and the food was fabulous. Turns out there were three surgeons (or was it four?) and three attorneys with us at the table that night. But this is Duke. You can't throw a dead cat without hitting a surgeon.



--Updated 1/28/2016
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the last week of February Back to top

In Monty Python's "The Holy Grail" there was a very funny scene where a guy was pulling a hand cart along a grimy, crowded street chanting, "Bring out yer dead! Bring out yer dead!" People stumbled from their hovels to throw plague victims onto the cart. One fellow carried his old dad over his shoulder and was about to unceremoniously deposit him, too, when the old man protested, "I'm better now! I think I'll go for a walk." A few coins exchanged hands and the old man was soundly thumped on the head by the collector so that he could be added to the growing pile. That's me: I'm better now! I think I'll go for a walk.

I had been disappointed and admittedly depressed by the last few frustrating weeks of my tedious wait in the lung line, but Andrea and I figured that as long as I was de-listed there was no need to stay in the Durham area, so we threw a few things into the back of the new Lexus and headed south to the Florida Keys. I wanted to see my daughters, my friends, and my new Keys kitchen. I wanted to spend time in the sunshine and eat fresh seafood. I was also curious to see how my new non-drinking self would fare in a place where industrial-strength rum runs in the gutters. How would my buddies--some of whom are two-fisted drinkers--react to my untested sobriety? More to the point, how would I react?

First things first: I did get to see my family. We enjoyed dinners together in Deerfield Beach and in Lighthouse Point. It was great. I miss my kids.

Secondly, both Andrea and I were completely blown away by the new kitchen. We had seen photographs of the work in progress, but the reality was overwhelming. It wasn't just a new kitchen. It was a new house. The transformation was like nothing I had anticipated. The impression when I entered the front door stopped me dead in my tracks. I was unprepared for the totality of the conversion. I had no idea about the impact of the stunning mahogany bar/countertop. It appeared much larger than I had expected from the photos. Everything was flawlessly beautiful, and the newly balanced upstairs, now filled with new furniture and a new look, was more than I had hoped for. Everything bleshed. Old mahogany to new, oak to oak, Dade County pine to Dade County pine. Taken together, the effect was stunning.

Andrea's New Kitchen Breakfast Buddies and Bloodys Islamorada Fish Company Good Non-Alcoholic Brew Sunshine!
Island Grill dining Nauti Dawg dinner Harry Anderson Skip's Superbowl Trawler Bob brought Lobsters!

We had so much fun putting everything away in the kitchen! Everything fit perfectly, and everything had a place. We fussed with little details, made little adjustments to shelves, rearranged drawers and just had a ball.

To top everything off, there was a reunion of my old buddies from far and near, all in the Keys for the Super Bowl. Everybody met at my house on the way to a wonderful Green Turtle breakfast. All 13 fit easily into the kitchen, oooing and aahing about this and that while I made wholesale batches of bloody Marys at the bar. It was perfect! Everything was right at my fingertips and best of all I felt no need nor urge to participate in the drinking! No pressure, no raised eyebrows, not nuthing. All my friends "got it" and they all supported what I was doing. Fabulous. These are the best of friends.

We spent the next couple of weeks happily visiting friends and favorite restaurants or cooking in our new kitchen. I must say, the best, freshest fish we had the whole time was the lightly sauteed yellow tail snapper we prepared for our friend Sheree at home one night. It's hard to complain about the dining, though. Bob Fennessey brought over three fine big lobsters that had made the mistake of wandering too close to his docks and ended up lightly steamed in beer with a bowl of sweet butter on the side. The three of us ate until we could eat no more! Before we left the Keys, we met Derrick, the artist who worked with my friend John to rebuild my kitchen. He and his wife were super, so we made some new friends as well as seeing our old ones.

On the way back to Durham, we spent a couple of beautiful days at one of our favorite stopovers anywhere: the Jekyll Island Club Hotel. This is pure, unfettered luxury, spent in the exclusive turn-of-the-century setting that harbored America's richest and most powerful men. This was where the Morgans hunted with the Rockefellers, where the first transcontinental phone call originated, where the Federal Reserve was born, where up to 6% of the total net worth of the United States played in exclusive isolation. I sat at the wonderful old bar and drank non-alcoholic beer while meeting and conversing with the most interesting people imaginable. To my left sat a Special Agent with the FBI who had been a nuclear submariner and who now dealt with cyberterrorism. He accompanied "Mr. Jekyll Island" Harry Anderson, 95, who is not a man you want to try to out-think or out-drink. We ordered his biography The Strenuous Life of Harry Anderson as a result of this meeting. His grandfather was one of the Jekyll Island originals, and Harry owns three of the "cottages" that America's richest had built there in the early 1900s. Involved with America's Cup racing and judging for many years, Harry is an accomplished sailer in his own right, and is Commodore of the New York Yacht Club. Google him! The third person in the party was Clark, but I did not get to learn much about him or what he does, unfortunately, although I enjoyed his conversation (his political conversation particularly) and insight enormously. That's the way it is at this bar, more than at any other. Challenging conversations flow like fine brandy from person to person, from barstool to barstool. Once again, I was delighted to find I felt no need to drink alcohol to enjoy my surroundings. Just as a side-note: Andrea and I have grown to appreciate a low-country specialty, shrimp and grits. The shrimp and grits served at The Club is unbeatable, with white Georgia shrimp so fresh and perfectly cooked they fairly burst in your mouth atop grits simmered in heavy cream and cheese. Wow. Breakfast there is also unbelievable (and included in the price!).

Pamlico House Bed and Breakfast Lee at Pamlico House Pamlico Living Room Fresh shrimp! Cajun Sampler

We got back to Durham just fine, easily in time for the pre-op preparation on the 16th and the actual ablation on the 17th, which went well. At least, until I tried to stand up four hours later and gushed about a pint of blood onto the floor, the bed, and my feet. No matter. A little pressure took care of everything, and I was back on my feet in no time. Ready to travel again.

Which is exactly what we did. Off we went for a great weekend in and around Little Washington, a quaint historic town on the Tar River/Pamlico Estuary. We explored everything from the oldest chartered city in North Carolina (Bath, 1701) to the Estuarium (which is like an aquarium, sort of, but for estuaries). I thought seafood would be plentiful, but I was mistaken. In this particular neck of the woods, if you are presented with wiggling-fresh seafood the first thing you do is throw it in a bucket and fry it. We did manage to find some good oysters, rich crab dips and hot, fresh shrimp, but a seafood town this is not. No matter; we had fun.

Back to Durham, then off to Hillsboro the next day to eat at LaPlace, serving the best Cajun food I have eaten outside of Louisiana. Maybe the best I have eaten anywhere. But our dining adventure was not over yet! Yesterday we went to the Parizade for lunch, and everything was as perfect as it could be. Elegant setting, top-notch service, the best General Manager anywhere, soothing background music, a great table, and wonderful food. After a spicy minestrone, we took our time with a lovely seafood risotto and the best Napoleon served anywhere. We dined for two hours, appreciating every detail. The timing of the service is impeccable. Appetizer finished? Plates are instantly removed by the waiter. Another takes his place to wisk breadcrumbs away. On his heels is another server carrying entrees, closely followed by the original waiter with big bowls of fresh grated cheeses and a pepper mill. Every detail attended to, quietly and in perfect style. This does not happen by accident.

Andrea kept herself in top-notch shape during all this adventuring. She re-joined our health club in the Keys where she worked out almost every day, ran through the Keys, across Jekyll Island, on the Little Washington boardwalk, and yet again upon our return to Durham. I have evidently married the Energizer Bunny!

And now we wait, refreshed and reset, to see about getting on that waiting list once again.

--Updated 2/24/2016
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the first half of March Back to top

Okay, here's a bit of news that actually applies to my lung transplant and not just about fine dining.

On Thursday, February 25th, I sent an email to Dr. Reynolds, the head of the trasplant program. I complained that I thought I would be re-listed very shortly after the ablation, but that I had heard nothing and was requesting an update. Very shortly thereafter, Jason (my transplant coordinator) called to tell me that the plan was to 1) have me go through the usual labs on Monday, March 7th (blood work, CXR, Pulmonary Efficiency Tests, doctor visit) to prepare for 2) re-listing on March 9th. Longer than I had anticipated, but at least it is in the works. Jason said my electrophysiologist had discussed the fact that a three-week wait was required between ablation and waitlisting, but I don't think that discussion ever took place. It may have, though, because I might have been under the influence of anesthesia at the time.

Meantime, I once again joined my rehab group beginning on Monday, February 29th. I was given a 6-minute walk test to check out any degradation I may have suffered as a result of skipping rehab for six or seven weeks. I walked only 379 feet. The way these tests work is semi-interesting. To begin, your oxygen saturation must be 90% or more. Then, you begin walking a measured course until your oxygen saturation drops to 87%, at which point you must stop until you have recovered to 90% again. I had high hopes that my lousy score would significantly enhance my Lung Allocation Score, but it was not to prove so; it was trumped by slightly improved arterial gas measurements for oxygen and carbon dioxide. Nonetheless, it felt good to be able to work out again until I had to jump through the last of the re-listing hoops later that week. On Thursday, I had another chest X-ray, more blood work (25 vials this time), and a pulmonary efficiency test. I remain stable at about 8% of expected lung capacity.

On Friday, I had to undergo another cath lab, but this was simpler than the ablation in that all they were really testing for was chamber to chamber pressure differentials. Dr. Wong, who conducted the test, came out of the control room to enthusiastically tell me, "You virtually duplicated your July tests. You have a good heart."

Since I was still not listed, Andrea and I saw no reason to remain within 30 minutes of Duke, so we happily roared off to Wilmington, NC, only a couple of hours away. We pulled up to a really charming B & B to get our bearings and headed straight to the waterfront to find some of the seafood Wilmington is famous for. After enjoying several minutes of sunshine and a short stroll along the boardwalk, we found a place to our liking. My Keys friends will immediately understand why we chose this place: It is called The Pilot House. What a meal! I ordered lobster newberg to see if I could compare it to the first newberg I had tasted in East Lansing, Michigan at the Walnut Hills Country Club on a Sunday morning in 1959. I could. This was better, with the addition of fat, fresh juicy shrimp and the richest, creamiest newberg since the dish had been introduced at Delmonico's in 1876. Andrea, who has come to cherish the differences among skillfully prepared shrimp and grits dishes decided to continue her quest in that direction. She was not disappointed.

Wilmington's
famed boardwalk
Pilot House Shrimp & Grits Pilot House Shrimp
& Lobster Newberg
My always-beautiful bride Lee at Pilot House
Thrilled to be getting another cath! Andrea returns her from her jog Defiance approaches
under elevator bridge
Defiance docks at Andrea's location Andrea captured an
artist at work

We rewarded ourselves with another stroll in the sun only to find a catamaran tour boat preparing to depart. Timing was perfect, so we jumped aboard and enjoyed the next hour cruising toward the ocean, 32 miles distant. Our boat was run by the only female captain on the river, and I had lots of fun talking with her as she guided our little group along.

When we got back ashore, Andrea decided she would like to run the boardwalk for a couple of miles while I comfortably squinted into the sun watching the river flow by. There was lots to see. The elevator bridge creaked up to allow the passage of the Defiance, a Coast Guard vessel returning from two month's duty in the Florida Straits intercepting immigrants. All hands were on deck for this impressive sight. Later, when Andrea returned to my observation post she told me about being there as the Defiance docked, with banners and speeches and proposals of marriage surrounding her.

Off, then, to the B & B. We were introduced to our digs, "Henry's Room" named for the artist who owned the home for well over 30 years. Nice place. Great camellia garden with over 30 species, many of which were in bloom to celebrate our arrival. We chose a Turkish restaurant for the evening, reputed to be the third-best restaurant in the city with the highest-rated seafood. Bad choice. My dolphin was breaded and fried as hard as Andrea's chicken. Worse, we were seated next to three couples who sounded like Jersey longshoremen, shouting obscenities so as to be heard over their equally obnoxious companions. It was a small place. There was no escape. I had no choice but to return to the Camellia Cottage and come down with a cold out of frustration.

But our host and hostess cheered things up the next morning with a truly wonderful three-course breakfast. We lingered over coffee (What else does one do over coffee?) until it was time to go, so Andrea and I headed down to the waterfront again to find a city tour on a beautiful, sunny Sunday morning. We found a horse-drawn tour that ambled up and down the streets of the historic district while the driver regaled us with stories and history.

Lee boarding the tour boat Leaving after the tour Andrea on the docks Our B&B, Camellia Cottage Our room, "Henry's Room" at the cottage
Three horses asses;
two are white
Happy Andrea.
She found a Kilwin.
Spring camellia bloom Breakfast at the cottage Typical Wilmington historic home

But there was more to see and we didn't want to miss any of it, so we jumped in the car and took a leisurely drive to Carolina Beach, reportedly one of North Carolina's finest. I was in search of sand, crashing waves, and seafood. We enjoyed our drive, with stops along the way, to the North Carolina Aquarium at Fort Fisher. We are suckers for aquariums, and this one was well worthwhile.

While there, I got a call from an old friend, Al Iosue. Would I, he wondered, be interested in reviewing and possibly editing his new book? My answer required no thought. Al is a brilliant doctor and amateur philosopher. We have shared hours of discussion, and I could not wait to read his work. Al had been a general practitioner, a psychiatrist and a radiologist. When we met, he was Chief of Staff at Cleveland Clinic. God, that was a long time ago: 1989, I think.

Carolina Beach pier A view from the pier Miles of beach Beauty and the Beach Ft. Fisher Aquarium
Hefty albino alligator Clever Sea Turtle bronze Hoping for a prince . . . Horse of a different color Leaving Camellia Cottage

I was still sick, so Andrea had to drive us back to Durham Sunday night in preparation for my meeting with yet another doctor, Hakim Azfar Ali. Very bright, unusually straightforward. My last hurdle prior to becoming relisted. And me with a cold, which I hoped against hope would not delay me. I took a couple of days off from rehab at his recommendation (no one wants to infect other transplant candidates of recent recipients) and returned on Thursday. While there, in the middle of my floor exercises, I got a call from Jason Hawkins, my coordinator. I was, he informed me, re-listed at 12:40 pm that day with a somewhat disappointingly low LAS of 33. But the hoops have been navigated, and now I wait for the phone call that tells me a donor has been located.

My Energizer Bunny is back in the Durham swing of things. Andrea eagerly re-joined her workout class here at the Lofts on Mondays, Thursdays and Saturdays. She loves those classes. Tomorrow she'll run a half-marathon, and I will be filled to the brim with pride. As always.

Back in the saddle again.

--Updated 3/12/2016
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mid-March Back to top

This week turned out to be beutiful, a lot of fun, and rewarding. To put us in a happy mood, the weather was spectacular. Blue skies, warm temperatures, cool nights. As we so often do, we started the week (which sort of runs from Saturday to Saturday for us, for some reason) by treating ourselves to a pleasant dinner at one of our favorite spots, Local 22. The evening was still just a touch on the cool side, so we were seated inside next to the windows overlooking cherry trees in early bloom and patio diners. Pleasant variety of treats, as usual: Perfect "soft" Scotch eggs, mussels in an unusual white wine sauce with lots of pita for dipping, and a first-rate cheeseburger to be shared. The mussels were set on a bed of black-eyed peas, which I have never seen nor tasted before.

Sunday was a real treat, and a bit of a surprise. One of our friends, Katie, is a hand surgeon fellow who often runs with Andrea. She had signed up for the Tobacco Road 1/2 Marathon starting on Sunday morning, March 13. This is a big-deal run, with 4,500 runners and 7,000 spectators. It is a qualifier for the Boston Marathon. But at the last minute, Katie was whisked away to Honduras, so she gave her number to Andrea. Andrea decided to run. She had not prepared for the race at all, other than her usual training, and her adrenaline kicked in the night before, robbing her of a good night's sleep. Nonetheless, we (more or less) jumped out of bed at 5:00 am because we had to leave at 5:30 to make the 6:00 time of arrival. We half-expected rain as we drove down the nearly deserted freeway in the dark of the night.

Dark of the night Andrea approaches the start Approaching the finish Great finish! Andrea's smile
Our friend Sam Guo
lent his support
Sarah Duke Garden steps Sarah Duke Garden
cherry blossoms
Sarah Duke Garden
view
Andrea's medal

Once we arrived at the race area, we were directed to what may have very well been the best parking place in the lot. Nice break for me, because I certainly did not look forward to a long walk. Andrea had already texted her friend, Sam Guo, who texted back that he would be at the finish line waiting for her. We killed a little time and Andrea fueled up on an energy bar and a banana as the sun began to illuminate the eastern horizon with beautiful salmons and pinks. Looked like we might have skipped the forcasted rain after all!

Andrea started well back; it took her almost six minutes to reach the starting line once the race had begun. No matter. The chips every runner carries accurately records the time every runner actually runs. I hung out, enjoying the morning, and set myself for about a two hour wait. It was a pretty long walk downhill fo the finish line, but there was no way I was going to miss Andrea's triumphant finish. (Long walks downhill are not much of a problem for me. It's getting back up that tests my mettle.) Sure as heck, runners in Andrea's group started to arrive. Many were staggering and needed help at the finish line. Andrea, on the other hand, ran in with a big smile on her face looking like she could easily run another right after breakfast.

We still had two treats in store. Sam showed up, having bicycled over from a race that he had just run, and there was free food. Lots of it. Pizza. Homemade breads. Fruits. Juices. Health freak that I am, I went through the pizza line three times. Tasty breakfast! Sam was his usual sunny self, encouraging and happy to see us. Andrea finished quite well; she ended up in the top fifth of the competitors.

I bought a little treat for Andrea after the race. There was a massage tent set up with a half-dozen masseuses and masseurs, so I told her to take her place and wait a few minutes. About halfway through, Andrea's masseuse was called away on a runner emergency: severe cramps and dehydration. He was put on an IV and carted off and the masseuse returned to give Andrea an extended rubdown. Best of all, because the massage had been interrupted, she did not charge anything for her excellent service.

Medically, the week started with a follow-up visit to the Duke Transplant Dermatologist, a lovely lady. Andrea came with me, and we stopped at the Appleby's right next door. Just as we finished our meal, the lights went out for the whole shopping area. Home Depot, where we were going to buy a tree for our balcony, as out of business, as was Total Wine, where we had planned to pick up some Clausthaler Amber non-alcoholic beer. No big deal, but trudging up the long stairs to the Dr. Meyer's office was very difficult. I made it, though, and she froze the end of my nose to treat the friable tissue resulting from a minor skin cancer a couple of years ago. (I am, after all, a Keys guy.)

Rehab was fine this week. I felt like I could finally get into the swing of things once again. I was refreshed and ready to go. I did well in my exercises and enjoyed the company of my still-waiting friends. Friday was an absolutely beautiful day, and we decided to mosey around the Sarah Duke Gardens. Cherry trees were in blossom along with redbuds and every kind of spring flower you can imagine, from anemonies to tulips. It was a lot of walking for me, but we were in no hurry.

Another garden view and yet another more still even more Sarah Duke Gardens
Birthday brunch buddies. Surprise! Andrea's shrimp and grits With Walt and Kathy Loy Beautiful flower arrangement My meal,
Norwegian salmon

The next day, Saturday, was my 70th birthday. Andrea, surprised to be waking up with a 70 year-old man, awakened me with a kiss anyway, and asked me what I wanted to do on my birthday. I told her that I'd like to see the day-to-day changes at the garden, but first, I'd like to check my emails and facebook to see if anyone had remembered me. So far, the only card I had gotten was from one of my brokers, and I was feeling a touch lonely. I took a shower and shaved at Andrea's gentle suggestion (she said I should look nice for my birthday) and went into the den to check my computer. I had not been there overly long when our dear friends the Loys poked their heads into the room along with our mutual friend Margaret, all from Charlotte. My first thought: Glad I've got pants on! Their first thought: Glad he's got pants on! We chatted happily until I was told it was time to leave for our lunch reservation. Andrea told me I should put on some long pants, not the shorts I was wearing. It was a chilly day, after all.

It wasn't long before we'd arrived at our destination, the George Washington Duke Inn, the same place Andrea and I had visited to celebrate Christmas together. Great choice, I thought. Glad I had worn long pants. As we entered the dining room, I was surprised to see two of the friends I had made at rehab. You've met Les and Carolyn before on these pages, and sitting across from them were Vince and Jan. "What a coincidence!" I cleverly thought. Nothing gets past me! Well, it only took me a few minutes to figure out that since they were seated at the end of a long table, their presence might have had something to do with my birthday. This belated thought was further reinforced by a beautiful flower arrangement featuring the number "70" smartly on top. It turns out that this affair had been planned for outdoor seating--everything had already been set up--when the weather turned cool and at the last minute, Andrea had to switch things around. She did so flawlessly.

Well, we talked and ate, and ate and talked. The brunch menu was wonderful. I ordered pecan-crusted Norwegian salmon served over sauteed cabbage and steel-cut oats (imagine!) in a ring of local squash puree. Andrea continued her quest to try every great low-country shrimp and grits plate she could find. Others enjoyed duck, wild mushrooms, or beautiful salads. Everything was perfect. Later, there was a cake--double chocolate, my favorite--with a bunch of candles on top. Not one for every year, but a bunch. I blew them out. They reignited. I blew them out again. They reignited again. After only a few times, I realized I had been caught in the oldest trap set for people like me with COPD. We all had a good laugh, and Vinnie offered me his oxygen.

I discovered why I had received no cards: Andrea had intercepted them and kept them in a nice gift box to present to me at the table. In the Austrian tradition, I read them aloud and enjoyed every one. Carolyn, God bless her, had baked me a whole container of cookies and I slowly came to realize how much time and effort everyone had put into this little venture. I was completely surprised every step of the way. Andrea and Kathy had pretty much set things up, Jan had made a beautiful table arrangement, and everyone was very nicely dressed. Well, it was a fine, fine birthday and I am very grateful to my wife and my excellent friends.

Many candles blowing still blowing chocolate on chocolate. Yum!


--Updated 3/20/2016

What's going on? Early May Back to top

This has turned out to be a much longer process than either of us had ever imagined. Most of my friends in rehab have become embittered about the long wait, even though everyone we speak to who has survived the process says that it is worth it, without question. For those still waiting after many months, the process might best be described as "tedious." It's easy to let yourself feel that with so few years of life left, it is discouraging to have a year or two snatched away only to stand in line at Duke, especially when you have seen so many of your shipmates be transplanted, rehabilitated, and sent home. Andrea and I, we fight that. We fight it by trying to involve ourselves in, and enjoy, the opportunities of this new, stimulating area. If you've been following my treatise, although somewhat interrupted of late by taxes, lawsuits and estate work, you know we have been doing our best and having fun doing it by making new friends, attending stimulating lectures and presentations, exploring the fine dining venues that crowd the Durham/Chapel Hill landscape, appreciating the beautiful gardens and botanical centers, and doing our best to stay in tip-top shape. For me, staying in shape is very structured, as I must, as you have read, work out for a minimum of two hours every weekday. Many of my peers just "maintain," doing only what they must to avoid the unwanted attention of our physical therapists. These are the same people who complain that they have been uprooted with nothing to do. They huddle in their rented apartments, they go to their clinical sessions. They wait.

But Andrea and I, as you well know by now, set new challenges for ourselves every week, every day. Andrea has excelled at this. She not only participates in her thrice-weekly physical classes held here at the Lofts, she has joined "Orange Theory," which pushes her very hard during very intense workouts at least twice a week. She bought a runner's watch that she consults hourly to monitor steps taken, quality of sleep, time in "the zone" and more. She walks, she runs, she races. She looks like a million dollars before taxes, even more beautiful than the day I met her.

I push as hard as I am able, albeit in a more limited venue than Andrea. When I started on the stationary bike months ago, I was able to perform only at level 3, even though I had been walking three or four times a day for two years prior to coming here. Now, I take some measure of pride by pushing myself to level 8, which leaves me exhausted and sweating. Of course, the only reason I can do this is because I am supplied with virtually unlimited oxygen--something in the area of 25 liters per minute--but I was using the same oxygen seven months ago. True, many nights I toss and turn with the whim-whams, but I always look forward to the next day, the next test.

We happily make friends, and we sadly watch them go, knowing that despite our protests to the contrary, we are unlikely to stay in touch. But the new friendships are stimulating and add interest to our lives. Sometimes we are blessed by visits from old friends, such as Eva Scott dropping by during cherry blossem time.

Since I am keeping this journal primarily for myself as a record of this phase of my life, I like to add some memorable specifics. For example, we went with our friends Les and Carolyn to the UNC-TISS National Security Fellows Program to participate in the 2016 Capstone Conference "A Conversation with General Martin Dempsey and Dana Priest." General Dempsey was the 18th and most recent Chairman of the Joint Chiefs of Staff until he stepped down on September 25, 2015. Prior to that, he had most recently been serving as the Army's 37th Chief of Staff. Other highlights of his career included command of the 1st Armored Division in Baghdad. Among other things, he also served in the Kingdom of Saudi Arabia and advised the Saudi Arabian National Guard. And what led to all this military glory? Exactly what you'd expect: a Masters in English at Duke.

General Dempsey was faced off against Dana Priest, the Chair of Public Affairs Journalism at the Philip Merrill College of Journalism at the University of Maryland. But she is best known as a Washington Post reporter. She won her first Pulitzer Price in 2005 for her revelations about secret CIA prisons in Eastern Europe and other counterterrorism operations around the world, investigations that forced the Bush Administration to close the prisons and change its policies. In 2009, Dana won the Pulitzer Prize for exposing deplorable conditions at the Walter Reed Medical Center in Washington, forcing the resignation of the Secretary of the Army, the Army surgeon general and the center's commander. She was a Pulitzer finalist for her series on the medical mistreatment of immigrants awaiting deportation. Her other awards are too numerous to mention here, but her 2011 book, Top Secret America: The Rise of the Security State is well worth reading.

General Dempsey, Dana Priest Cokie Roberts Point well made Smooches for dessert

As an ex military guy, I went to hear the general, of course, and held a dim view of the journalists who seemed to be undermining our efforts to gather intelligence from the bad guys. I was glad I went. General Dempsey was everything I had hoped for. Articulate, extremely knowledgeable, and forthcoming. I asked him about the creation of the Green Zone in Bagdad, and offered that from my perspective, it seemed that in the early days of our success in Baghdad, our soldiers were welcomed into the population, helping to pull down statues and handing out candybars, every soldier a diplomat. But then, we seemed to withdraw from the people and fortified ourselves as invaders behind the barbed wire of the Green Zone, which not only alienated us but provided a handy target for extremists. Specifically, I asked whether the Green Zone was the result of increasing emnity, or if the increased emnity was the result of esconcing ourselves in the Green Zone. Which cause, which was effect? The response was a thoughtful "yes" and "yes," which led to a very interesting discussion.

But my surprise of the evening came courtesy of Dana Priest. She was, in a word, brilliant. She gave me an entirely new perspective on the role and necessity of investigative journalism. I told her later that although "thank you for your service" was often told to members of the armed forces, I personally wanted to thank her for her service to the United States of America. We had a brief but happy discussion while the general sought Andrea out to gaze into her eyes and thank her for coming. Nobody gazed into my eyes.

But I did better after attending a presentation by Cokie Roberts. I stood to ask my question, but started by thanking her for being there since I, like every other red-blooded American male at one time or another, still held a secret crush on her. She smiled and laughed, saying it was the nicest thing anyone had ever said to her. My real question, though, was about her subject: women of the civil war era who had unquestionably changed the course of America following the carnage that left 600,000 dead. "Was this," I queried, "similar to what happened to the serfs following the decimation of Europe as a result to the plague? Though no design of their own, their labor became economically important. Had the women of the civil war been sucked into the vacuum left by countless dead, or did her research lead her to believe that they stepped into positions of influence intentionally and consciously?" Cokie gave a long, thoughtful answer that boiled down to, "One does not preclude the other; both were factors." There I go again, trying to differentiate cause and effect. But later, we had a chance to exchange a few private words, and I felt like I was right on the verge of getting an eye-gaze. But I believe this was more the result of her sparkling personalty than her attraction to an old guy with a foolish grin on his face. Anyway, she inscribed her new book Capital Dames: Politics in the Nation's Capital, Past, Present and with a look to the Future "To Lee, Captain-Admiral of the Ocean-Sea, the Man with the Look of Eagles."

My new, well-deserved rank Start of warm-up 5K The Winner! UNC Bell Tower
Clock reads 6:15
VERY early breakfast

The following day, I found a one-off silkscreen company and had Cokie's inscription emblazoned on a new T-shirt. I bought a second shirt, too, and had it inscribed, "The Older I Get, the Better I Was." Oh well, I thought it was funny.

Shortly after winning her age group in a fun 5K, Andrea ran in another big race in Chapel Hill called the "Tar Heel 10 Miler." It was the beginning of a one-in-a-million day, which started early and ended late. We had to jump out of a warm sack at 5:00 A.M. to leave by 5:30 for the race. We arrived in darkness, but the place was already busy, with cops to direct traffic, people setting up booths and fences, and lots of other goings-on. I was a little worried about the parking, knowing that it would be extremely difficult for me to hoof it to the starting line even from the closest parking. So, we opted for dropping me off close to the start while Andrea parked the car a quarter-mile away. At the starting area, we had to drive around a barricaded street to drop me off and turn around. The cops wanted to know what the hell we were doing there. We explained, and the fellow in charge directed us to park immediately across the street in an area reserved for police and ambulances. Turns out his father was on a waiting list, too.

So there we were, sitting across from the bell tower at UNC Chapel Hill on a chilly, dark morning, perfect for running. Over 7,000 registered runners showed up for this race, and to our joy we connected with Sam Guo, Andrea's friend from the Inca Trail Runners and a stunning girl who had flown in from Ohio via New York just to participate with her Inca Trail friends in this race. Colleen had run with Andrea and Sam on the 100-mile Inca Trail and on the 50-mile Calgary Rocky Mountain race in Canada the year before. This group of people has a certain magic to it, a sort of instant bonding of trust and support that is wonderful to witness. Now Sam is a hotshot runner, a top finisher who ran the difficult course in 53 minutes or so. Colleen and Andrea ran neck-in-neck, trading places until the long, steep hill at the very end, when Colleen surged ahead. Both finished very well at around the 1:30 mark (Andrea was in the top 15% of her group!). Everything about this race was inspiring, from the number of runners to the beauty of the course, from the perfect National Anthem as a prelude to the carrilon pealing the UNC fight song at the start. What a spectacle! Some of the finest, fittest people on the planet happily gathered for a hard-fought celebration of life and health.

And that was only for starters. We met Sam and Colleen, now showered and refreshed, at one of our favorite restaurants, Local 22, for lunch, which we enjoyed in our usual fashion by trying a sample of this and a modicum of that. I was happy with my near-beer, but our runners weren't at all shy about a cold beer or two after a long run. Aterwards, we took Colleen to see the Sarah Duke Gardens. I more or less found a pretty spot and hung out people-watching while the three runners took off on their vigorous walking tour. They seemed to take their sweet time, and I was soon to find out why: They had not only toured the Garden, they had jogged through Duke University to soak in the sights. Jogged! After a 10-mile run!

Our day wasn't over yet, by any means. We all drove to downtown Durham on what had beome a splendid afternoon. Our first stop was at the Parlour, which serves the richest ice cream I have ever sampled. We enjoyed every spoonful and lick until it was time to walk to the restaurant at the top of the Durham Hotel. This is definitely one of Durham's hot spots, with a great raw bar and the best views of the city anywhere. This might have been enough to conclude a perfect day for many, but it got even better for us. We were joined by my excellent friend Skip Ward and his super-great wife Charlotte, our buddies from the Florida Keys. We all had a ball. Sam and Colleen got along with Skip and Charlotte like long-lost friends and we shared plates of spicy steak tartare and platters of raw oysters swilled down by delicious drinks. This continued until well past sunset, when we were suddenly surrounded by five or ten thousand chimney swifts that filled the sky with acrobatic twists and turns, flying in perfect unison, cirling in a ballet of coordination impossible to choreograph. Eventually, they spiraled into the Lucky Strike chimney, having provided us with a magical hour.

Near the end Strong Finish Colleen, Sam, Andrea Lunch at Local 22 Showing Colleen Duke Gardens

Otherwise, we have discovered even more great new restaurants and enjoyed the explosive spring of the Carolina Piedmont. Most afternoons Andrea has a tasty lunch waiting for me when I return from rehab, and I often follow that with a snooze in the sun on our balcony overlooking the pool. Andrea participates in things I cannot join her in, like a great walking food tour of Chapel Hill. She visited coffee roasters, meatball bars, and other places we would not have ordinarily seen. We have had wonderful lunches at PariZade with old friends and new and best of all, I had a really sub-par six minute Lung Allocation Score walk. This should help raise my score and put me in a better positon to take my turn in the OR to get my new lungs.

Great food Great portrait Great dining Great friends at Raw Bar atop the Durham Hotel

So don't worry about me. I will finish the course as best as I can, ignoring the illness and savoring the excitement of new places and things. I cannot ever give up, because in a sense my conduct is my legacy to my wife and kids.

--Updated 5/7/2016
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On Sunday--Mother's Day & Duke Graduation--it was impossible to get a breakfast, lunch or dinner reservation anywhere in Durham. But that was okay. We had a great day. Here's how:

It started with Andrea popping out of bed to attend her usual "Orange Theory" workout class, which left me dangerously unsupervised in a kitchen filled with sharp knives. I was looking forward to this because we had invited two excellent new friends over for brunch. Roy and Barbara McDaniels were set to arrive at 1:00, giving Andrea time to work out, drive home, and shower. I chopped hard-boiled eggs (separated into whites and yolks). I hacked a big red onion into fine pieces, and cut bagels into thin wheels for toasting. I rummaged through our limited serviceware to select just the right stuff: fancy spreaders, crystal serving bowls . . . stuff like that. This was necessary because I had bought some white sturgeon caviar the day before, along with salmon roe. I planned on starting our brunch with caviar, toast triangles, chopped eggs and onion with whipped cream cheese. I mixed fresh orange juice with phony (effervescent cider) champagne to make mock mimosas, which are pretty darned good, by the way.

That was only the first course. The second course consisted of thinly sliced salmon, smoked and seasoned five ways, served with the usual capers, red onions, sliced tomato, and cream cheese. Some of our carefully crafted bites were topped with salmon roe, some with a honey-mustard dill sauce, some with both. My favorite breakfast, bar none.

We saved a tiny bit of room for a huge fruit bowl Barbara had prepared, served with tiramisu and about a gallon of steaming coffee. We were unable to face Barbara's chicken caesar salad eye-to-eye, so we vacated the field of honor after eating for only three uninterrupted hours. On Sunday morning, I had awakened at 173.5 pounds. Monday? 176.5.

Plus Ça change . . .Mother's Day marked the exact anniversary of the beginnings of the transplant process. The most memorable thing about both days was that they began with a great brunch.

Roy and I have taken to hitting a bucket of golf balls in the morning before rehab, which we did the following day. We are well-treated at the golf course. They give us a free cart to get back and forth to the driving range, and even throw in a couple of free buckets. It is a great way to start the day. After rehab, we drove back to the apartment where the ladies had prepared a very nice lunch with the unsampled chicken caesar, fresh-cut fruits, near-beer, and the other half of the tiramisu. I staggered off to bed afterwards, having thoroughly stuffed myself just in time for my afternoon nap.

Remember Stan and Bettye Sue Kline from the first week in October? Stan called Monday evening and told me they are back in town for post-transplant clinicals and a bronchoscopy, and wondered if we were free for dinner. As you have probably surmised by now, we are always free for dinner. Their timing was particularly good since Duke Chapel was scheduled to reopen after extensive maintenance work. It had closed the week after the Klines arrived in Durham last April. We got to go together and attended a guided tour and listened to the carillon concert.

Dinner with the Klines Duke Chapel organ Duke Chapel tower Duke Chapel inside A beloved professor

I had hinted earlier that the lousy score on my LAS six-minute walk would reward me with a higher score and put me one step closer to transplant. It did exactly that. I had "clinicals," too. One of the many tests concerns arterial blood gasses, which can be relatively painful. Discomfort aside, my scores were lousy on that, too. Taken together, they raised my LAS to 34.7895, which is decent. I hate the very concept of being rewarded for sub-par performance of any kind. Makes me feel like a welfare recipient.

Les and Carolyn and Vinnie and Jan were about to leave Durham to return home, so we planned a special dinner at Nana's Steak. Roy and Barbara were invited as well. I don't usually order steak because if I have access to a grill, I can usually do it better myself. I'm not sure that I could have done a better job than Nana's did, though. Still, a steak is just a steak when you get right down to it and spending $56 for an á la carte chunk of beef feels a little pricey to me. But it was Andrea who discovered the hit of the menu: the best bouillabaisse I have ever sampled. We really enjoyed Vinny and Jan, but unfortunately Barbara was under the weather so they couldn't come, and Les and Carolyn had a conflict they couldn't resolve (No! They weren't fighting. It was a scheduling conflict.) so it turned out to be just the four of us, which gave us a welcome chance to get to know each other even better.

As I look back through my calendar for things to report in this journal, I see more fine dining, lunch and dinner. Taken all together, this missive must read like a restaurant guide. I suppose it is, in a way, because good food is one of the relatively few things we can enjoy on our short tether, especially with my inability to participate in many physical activities. I always encourage Andrea to get out and do other things, though, even if I can't join her. So in the interest of diversity, she enjoyed a stimulating walking tour. . . of Chapel Hill's best restaurants.

Dinner at Nana's Steak Best bibb wedge ever Bouillabaisse! Saratoga lunch with Les & Carolyn Walking Food Tour group

We did have a lot of fun at a Bull Durham game, though. It was concession night, which featured $1 hot dogs. Over the course of the chilly game, I managed to gobble down five of them. They weren't great hotdogs, but it sure was a pleasure to wolf them down like a kid. I know, I know. But it's better to talk about the hotdogs than to dwell on the game score.

In keeping with my apparent inability to write of anything else, Andrea and I have been enjoying oyster night every Tuesday at the Vin Rouge where the plumpest, freshest, coldest oysters are priced exactly like the hot dogs on concession night: a buck each. We can plow through about three dozen of them.

This past Friday we had the very great pleasure of seeing our friends Bryan and Susan Haslam from Asheville. Bryan and Andrea went to nursing school together, but Bryan went on to become a Nurse Anesthetist (CRNA). They were here because Bryan's dad, Battle (isn't that a great name?) had suffeed a major heart blockage and was hospitalized in Chapel Hill. Battle kept them busy for a couple of tense days, but once he was discharged, we were free to have some fun together. We met at "Kipos," a first-rate Greek joint that serves exactly what we'd hoped for: great Greek salads, savory lamb dishes, and spectacular appetizers. We started with Saganaki, a wedge of kefalograviera cheese flamed tableside with metaxa and doused with fresh lemon. But the real fun was not the food this time, but rather that Bryan and I jumped up to dance with the belly-dancer whenever we could. Sometimes, Bryan and I jumped up to dance even when the belly-dancer was unable to attend. So we danced, and drank (well, most of us, anyway), laughed and noshed our way through a splendid evening. We decided to change venues for dessert and ended up at "The Shoppe Bar and Meatball Kitchen." All they serve are meatballs and one dessert: bourbon chocolate bread pudding drizzled with salted caramel and whipped cream. Well, it is a bar, too, and under the expert guidance of Bryan and I, some few Moscow Mules presumably evaporated at our table, along with a flight of bourbons poured for Bryan's expert critique. A great night, and we were sorry they had to drive back the next morning.

In keeping with our vigorous diet plan, we made absolutely no food commitments until the next morning. Andrea had located a hidden little outside corner at the Lofts that is wooded, private, and best of all,virtually unused. Tucked into one of the shady corners is a Jenn-Aire grill. That's all the excuse we needed to get together with Roy and Barbara for a four-hour Saturday pigout. Thick, freshly cut Delmonicos. De-boned free-range chicken thighs. Filets. Pork Tenderloins. Grilled mushrooms, a couple of great salads and plenty of ice-cold "near beer" rounded out the offerings for the four of us. It was enough to engorge a dozen trenchermen. The idea was to have plenty of grilled leftovers to tide us over with authentic barbeque flavor. We succeeded.

At Bull Durham stadium The Bullpen Showing the dancer how it's done Magnolias bloom everywhere! Greek Salad
Oyster night at Vin Rouge A better view Barbeque with Roy and Barbara Bourbon Chocolate Bread Pudding Lecture at Rehab

I did enjoy a small non-food victory. At the close of our rehab session on a Thursday afternoon, we were all informed that there was a new, mandatory series of lectures to be attended by patients and caregivers. Half the lectures were to be delivered at the Duke Medical Pavillion, an impossible place to park, and half at the Rehab Center. Problem was that the lectures were to start the very next day, Friday, at 11:30. So here we are, uprooted from friends, family and home, trying to make a life here in Durham for the duration, and we are informed, in the most high-handed way possible, that we, and even worse, our caregivers, had to disrupt any plans we had made and listen to a reorganized but otherwise redundant series of lectures. I was quick to voice my displeasure at the start of the Friday lecture, which earned me fearful looks from Andrea, who understands perfectly the "don't rock the boat" mentality that keeps one in good graces around here. To my astonishment, we received a phone call later that afternoon telling us that attendance was now voluntary. A minor victory!

I've had a couple of other victories as well. Monday through Friday, we endure roughly the same regimine of excercise: walking, biking, floor exercises and lifting. Many of the physical therapists tend to duplicate our lifting during the floor exercises. By that I mean that if you have worked on your upper body, stressing muscles such as the tricep or bicep, it is pointless to stress those same muscles during the floor exercises. Could be counter-productive, too, if you haven't had a chance to relax those particular muscle groups for 48 hours. I suggested that we ought to concentrate instead on four things during floor; namely, stretching, breathing, core and balance. I also suggested that one day a week devoted to Yoga would address all four areas. The very next week, one of the PTs, Jennifer, started integrating yoga into her routines, and I noticed a shift in emphasis by every instructor away from skeletal muscle duplications to more core and balance. Wow! Somebody is listening. I am glad that over the nine and a half months I have been here, some folks have recognized that I might know what I am talking about when it comes to exercise. This is personally rewarding to me.

--Updated 5/30/2016
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Healthy Mind. Health Body. Take your pick. Back to top

Memorial Day will never be the same. It is the day my life got a start-over. Sometime early in the morning of May 31, Dr. Hartwig (at left on right) stapled me shut, breathing with a brand-new set of lungs. Just before they put me under, I remember my last thought to be, "all I've got to do is wake up." I am sure that I felt no fear whatsoever. Forty people in the Operating Room were there to see that I was going to be fine.

I woke up, a BOLT. I was almost a BLT, a frightening medical possibility if they hadn't changed the name from Bilateral Lung Transplant to Bilateral Open Lung Transplant. I vaguely recall first thinking I couldn't breathe. Andrea said my first request was for my inhaler, but very quickly I came to realize that I could breathe and that it was time to get up and go. I was fuzzy and confused, but I walked all the way down the hall and back with a cadre of helpers: Andrea, was there, along with three nurses. One to push a chair behind me in case I fell, one to help gide my "Swedish Walker" and one to push a wheeled hatrack filled with bags to carry fluids from my body and medications to drip into my body. I barely remember that walk. It is all dreamlike now (it was probably dreamlike then, too) but it was better than I expected. My legs felt fine, and I could breathe for the first time in many years. I started out at nearly perfect oxygen saturation levels. I was so drugged up that when they came to draw blood, I asked Andrea to get my insurance card and photo ID, sure I'd have to pay for my services a la carte. I halucinated for days, seeing rich red and blue brocades whenever I closed my eyes. Every button on my bed held a sleeping spider, colored to match the bedframe.

The very next day, I was transferred to a stepdown unit from the ICU. My stepdown was in the old section of the hospital, and the rooms were very small, unlike those in the new Hilton-like Stepdown. Andrea was with me morning and night, and to my absolute surprise and delight so was our friend Becky Petranka. Becky was my secondary caregiver, and she had signed up for a very difficult assignment. Very quickly, Andrea and Becky worked out their schedule: Andrea would be with me on the night shift and Becky would work days, 12 hours on and 12 hours off. Becky was a lifesaver, and was absolutely unstoppable. She watched out for me every second. I remained foggy for a time, though, so she at least got to witness some funny stuff. For example, I had frequent doctor visits. They'd come in to check my chest tubes, among other things. To see if there were any bubbles, they'd ask me to cough. Well, because of all the meds I was having some bowel problems at the same time, so when the good doctor bent to look at the Atriums and told me to "let her rip," I dutifully presented him with a fart that must still be echoing off the walls!

But it was the beginning of my hospital legacy, for I walked a mile up and down the hallways on that very first day in step-down. Two miles on the second, three on the third, seven (a new all-time hospital record) on the fourth, and ten on the ninth. There was much joy in Mudville, for no one had ever attemped such a feat. Altogether, in the three weeks I was there, I walked just over 100 miles. I quickly became known as the "Marathon Man." Everybody was cheering me on; every nurse, CNA, PA, doctor . . . even the maintenance guy, Chris. I saw that Chris had an American flag on his cart, and asked him if he could get me one. I mounted it on my walker and cruised the hallways night and day. I started dressing in my civvies instead of my gowns. Later, every Doctor, nurse, nursing assistant and manager signed my flag, which I will proudly frame and mount. My walking became the currency of the kingdom.

My hospital stay was a Zen experience in surprising ways. Patient Rights took on an entirely new meaning. Medically speaking, I was stripped of everthing, including every last shred of dignity. I was fed through a tube down my nose, I urinated through a Foley catheter, I could drink nothing, my bowels had come to a standstill. I had to earn every one of those privileges. If I wanted to swallow food, I had to undergo Fees testing, which involves a second tube, this one with a camera at the end, down my nose. I failed it. I worked and worked on my swallowing mechanism, and got my NG pulled two days later after passing the Fees. That earned me the right to eat a "mechanical" soft diet with thickened liquids. Immediately afterwards, I was given some cold thickened grape juice to drink. It was possibly the most delicious beverage ever concocted, cold and sweet. I had to take meds to get my bowels restarted, and that was no simple balancing act. Meantime, you haven't lived until you have tasted coffee thickened to the consistency of honey. I shifted from 100% constipated to its equally unpleasant counterpart. But I ate what I was told to eat, and I took my meds faithfully, and eventually had another right restored: I had earned the right to pee without a catheter. Even that wasn't easy. I was swollen like Frosty the Snowman.

So I walked and walked. It helped control the pain and I preferred it to the opiates, which clogged my mind and body. Walking got my day started, often at 4 or 5AM. It helped me sleep. I had earned another right: I was given more independance that anyone else. I could wander off the floor to first the elevators, then to Starbucks, then to the cafeteria. At first, I was accompanied by a CNA; later, I was allowed complete independance. I visited the outdoor garden area, went to Starbucks early mornings, and visited my fellow BOLTS in the new section of the hospital.

Everybody knew who I was and what I had accomplished. The head of the transplant program sent one of his doctors over to tell me that "my name was forever emblazoned on the stone walls of Duke Medical Center." Everybody stopped by to see me, I was always greeted with smiles. Every new nurse and doctor knew me. And what nurses! Caring, competent, lovely ladies who way more than made up for the cramped room. They were there every minute of the day for me, and helped with everything, including scheduling, to seeing that I got a good night's sleep. I loved them all.

One of the Doctors, Dr. Daneshmand, told me that he could train a monkey to do a lung transplant; I had the hard part: recovery. I was relieved to learn that Bo-Bo had a future.

Admission Headed to Pre-Op Pre-Op Old unscarred body Pre-Op
Surprise Medical procedure Ready in Pre-Op My dashing new cap Ore! Ore! Note the time. Cheerfully waiting

So, Patient Rights? Every one of them, even the most basic bodily functions, had to be earned. No doctor could declare me healed. There are no entitlements. This fit my philosophy so perfectly that I was very much at peace in my new world. And everything is new, even the way I read magazines about future technologies. Things like artificial intelligence hadn't much interested me, because I couldn't be a participant. Now, it looked like I might stick around for a lot of things.

There were other important lessons, too. On the day I walked 10 miles, I was exuberant. I called a close friend from rehab, who had just received a bad piece of news from the labs. It was like a kick in my stomach. I had learned much too late that you cannot be happy in a vacuum. My joy could not be complete unless and until it was shared by others.

All this time, I was more than ready to go home. But I still had 3 pesky chest tubes draining into three Atria, and we just couldn't get them out. But I knew that it was just a matter of time. I was truly well enough that I didn't need 24/7 help from Becky and Andrea, so Becky drove back to Asheville and Andrea came in the morning to join me for breakfast and stayed through dinner. She would walk with me and even shared hospital food with me (no greater love!). Watching her in action was really an eye-opener. What a pro! She knew and understood every med, every procedure. Sometimes the nurse would permit to help by flushing my PICC lines (tubes that ran from my right arm into me heart so that IV meds were instantly pumped throughout my system), or give me shots. She heard every medication report, keeping the nurses on their toes. She could carry on medically intelligent conversations with my doctors. She was a blue-eyed wonder.

ICU with Becky Ready to walk First walk First walk back Exhausted

My days in step-down often started at 2 or 3 in the morning. I would get up, generally from a fitful sleep in the chair, and clean my face with sterile toweling. I used sterile water to shave, and rinse-free shampoo to clean my hair. I would brush my teeth (sterile water again) and walk a couple of miles. Everything had to be sterile because my immune system had been purposefully shut down to minimize the risk of infection. Medically, my days consisted of new IV drips, many pills many times a day to prevent bacterial, viral and fungal infections. Other medications built my electrolytes or suppressed my immune system. This happened every four hours, including checking my vitals (BP, temp, glucose levels, pain levels . . . you name it.)

So I was stuck as many as four times a day, always on my left arm, which became one giant, sore bruise. I was wheeled down to radiology every day for an X-Ray, I got EKGs at least daily and had to undergo different tests at different times, such as new barium swallows. All my various and sundry parts performed perfectly, which I attribute to the excellent care I was given and to the unprecedented exercise program I had undertaken. I felt strong and well-oriented. A couple of friends came to visit, including Sam Guo and a new psychiatrist friend Michael Kritzer. Philip Butler, Skip Ward's new son-in-law, surprised me. But then I remembered that he had done some work on me during my ablation because there were three Philips in the room. Douglas and Eva Scott drove down from Virginia. Chancy, a wonderfully cheerful transplant, stopped by to offer her support, and so did my friend Roy McDaniels. I even got to see Heinz and Dawn Grohs! We walked a mile together to and from the cafeteria. But no matter who visited, they had to wear a protective gown and mask in my room. I was as protected as I could be under the circumstances. I was in "reverse isolation", but not quite a bubble-boy. In the hallways, I had to wear the mask; in my room, everyone else did.

There is no way I can ever tell everybody--visitors and callers and well-wishers, how much their support meant to me, even though I could not reply to their inquiries myself (another Andrea job!).

We had uncounted professional visits, too. Dr. Hartwig came by, as did respiratory specialists, ENT doctors, doctors and fellows on rounds, and to my joy, Dr. Sharon Larson, a Cardio-pulmonary surgeon we met early on at our stay at the Lofts. She eventually headed up my "rounds" team, and I was glad we had a chance to interact professionally. Now I face clinicals a couple of times a week, but I am here to tell you, the first one was a pleasure. I blew past everybody, improving my overall lung function by as much as a thousand percent. For example, my small vessel efficiency had dropped to 3% of expected. On my first pulmonary function test, this improved to 219% of expected. I am sure I got a youngish, athletic doner.

You wouldn't think it could, but it gets even better. There is a virus almost all adults are exposed to: CMV. The meds are very expensive--several thousand dollars every month. I was negative, but the odds of my doner being negative too hovered around 4%. Had he been positive, I would have taken these drugs for the rest of my life. Now, and only for caution's sake, I will take them for only three months.

Fulla Hose (a good hand in Italian poker) Walking with Becky
and Andrea
Plugged in Monitor at 100% saturation Transfer to stepdown from ICU
Eva and Douglas Scott Carefully reviewing
my EKG
Accompanied stroll Walking alone Walking with Andrea

One of my goals was to run a 5K this fall. An impossibiliy. But yesterday, I walked a strong 5K up and down some steep hills. I am told my lungs will continue to improve, if I take care of them. And I do. Went to a barbershop yesterday. Interviewed every barber to see if any had had recent sniffles. Yes, they had! Went on to the next shop some miles away, where I found the people who would be breathing in my face in good health, even though I wear a mask under these circumstances. Caution.

I am blowing them out of the water at rehab. For the past few days at the hospital, I had worked on my posture, standing and walking erectly. That alone put me way ahead of the pack! Morning rehab is a very happy place to be. Everybody has their lungs and wears a constant smile. We are brothers and sisters.

Civvies with Larry,
Moe and Curly
Sam and Andrea Off to Radiology,
a daily trip
Walking at Duke Personal Record
Independence!
At the Atrium.
For Peter Loewer My drug supply Home at last! Back at Rehab
Lunch at Local 22 Salmon at home. Yum! Tuna, seared for Andrea,
cooked through for me.
5K on the Al Buehler Trail


--Updated 6/28/2016
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Speed Bump Back to top

We had planned on driving to Asheville for a long holiday weekend, but first I had a minor bronchoscopy to take care of. No big deal. But I've been keeping very careful charts, and noticed three things that were slightly troubling to me. First, I had gained 8 pounds within the past few days, and my feet were swollen again. Second, I noticed a slight downturn in my Pulmonary Function Tests, and third, I had a couple of painful episodes that nearly brought me to my knees. I had felt clammy. I saw double, briefly. Something wasn't quite right. So, I carried these concerns to Dr. Ali, who had already prepped me and was ready to perform the bronch. He was worried about a couple of life-threatening possibilities: heart failure and a possible pulmonary embolism. The bronch was cancelled, and I was re-admitted to the hospital. This definitely put a damper on my mood, as you might well imagine. Especially after fighting so hard to get out of the hospital to go home. Still, it had to be done.

I have written before about the depth of Duke's bench, but the follow-through on this was unbelievable to me. I was visited by no fewer than four doctors within the first few minutes of my readmission, including a visit from Dr. Snyder, a wonderful pulmonologist who is coincidentally married to Dr. Hartwig, my surgeon. They quickly put together a game plan for me. I was taken to a different step-down unit and a number of tests were instituted. There were X-Rays and EKGs and bloodwork. Pesonal Assessments were carried out. New meds provided. I was visited no fewer than 3 times by the head of the transplant program, Dr. "You're making me look bad" Reynolds, his NP Rebekah, and Dr. Sharon Larson.

This all helped me keep my dauber up, but not as much as what happened next. My excellent friend Roy, whose window of opportunity was closing fast, got his lung. (Roy had Idiopathic Pulmonary Fibrosis, not COPD like me. IPF recipients get only one lung, and it is done through a four-inch incision.) I got immediate reports on Roy at the conclusion of his operation.

Remember what I said about being happy in a vacuum? Until I was able to share his joy and he mine, I could not be completely happy. I felt like shouting in triumph as I was driving home from the hospital with this excellent news.

Come to think of it, I think maybe I did.

--Updated 7/3/2016
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People have asked me . . .

How do they keep the lungs alive? The doner is kept alive until the procurement teams remove the organs to be used; the doner is simply brain-dead. In the case of lungs, the Duke protocol is extensive, involving flushing the lungs back and forth with a special fluid used to both chill the lungs and maintain perfusion. The lungs are then tested for blood gasses in three places on each lung to ensure that the lungs are working properly. Tests for blood type (and far more) are completed. The lungs are then examined in a tactile way: the plural sac is examined for fluid, the lungs are examined for nodules, and the trachea biopsied. The lungs, now flushed, squeaky-clean and carefully examined, are placed in a bag filled with the same fluid used to chill the lungs. This bag is put inside a bag of ice, and the whole kit and kaboodle is placed within a third bag and rushed to a waiting private jet, which transports the lungs to Raleigh Airport to be met by an ambulance. At this point, I will have been prepped in the operating room, and ready to receive my new lungs.

Where does Duke get the lungs? Duke will fly up to 4,000 miles to examine and transport doner lungs (see above). They send doctors and others to evaluate and test the doner's lungs. To broaden my doner pool, I have chosen to accept "high-risk" doners. I believe the expertise and experience of people like Sharon more than overcome any additional risk this may entail.

What do you mean by "focused"? One example: Almost every single evening, I made it a point to download and study my financials. Every brokered asset was transferred to spreadsheets I had created over the years and subjected to all sorts of manipulations to track my progress long- and short-term. I have done this for almost 30 years without fail. Now, it hardly seems to matter; all I focus on is improving my health and knowledge to maximize any slight weighting of the dice in my favor. My world focuses on surgical outcome probabilities and improving my odds.

A world of "Sunscreen and Hats"? In the Keys? Unfortunately, a very high percentage of transplantees develop skin cancer. It is the result of the immunosuppressants they feed you. Lots of other restrictions, too. Can never clean a cat litter box (Darn!). No birds. No Sushi. A transplant doesn't fix everything; you simply trade one set of problems for another.

How many people in the OR during the surgery? Short answer: as many as 40, counting the dancing girls.



Lee & Andrea Rushlow
Asheville, NC
and
Tavernier, FL

954-785-9000
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