Kidney transplant: yes or no?

For a long time I have been thinking about what I am going to do when the time comes for me to decide whether to get a kidney transplant.  I have another 5-6 years to wait so there is no real hurry, but I still need to have put thought into it. If I talk to a transplant surgeon or a nephrologist, they have no hesitation in arguing for a transplant. However, none of these people have any personal experience of living with a transplant. I have 25 years' experience. It's a nightmare. You have to constantly be under stress about your blood values, you are in a doctor's office every few weeks getting a blood test (and then the excruciating wait till the results are known), the occasional, random increases in creatinine stressing the hell out of you (is this the end?). You have to take immunosuppressives, and they make you catch infections all the time.  Transplantation just replaces one problem with another set of problems.

But yesterday I talked to a nephrologist who gave me a much more sensible criterion for making the call. He told me that for my specific case, i.e., for my individual and particular situation, it makes sense to hold out for a good quality kidney. Then he defined good quality for me: from a young, healthy person, non-smoker, does not take too long to get to me, has a good match. When I get the phone call, I will be allowed to ask the surgeons whether these criteria are met before deciding whether to say yes or no.

This doctor's advice was to just say no if the kidney didn't meet the criteria, and wait for the next one. And if the kidney met these criteria, I should take the chance and get a transplant. I think this makes a lot of sense: I can maximize whatever gain I can get by a transplant by getting the best possible kidney I can get. Until then I am just doing fine on dialysis. I feel much less stressed about this now.

This is the first time a nephrologist or surgeon has given me anything other than an unconditional "yes" answer. I think that doctors need to think harder about their patients and their particular situation and give more informed advice than they generally do.  Just giving a patient an oversimplified answer is more harmful than helpful.

Shunt Revision [Warning: blood-drenched photos of shunt]

So I just got home yesterday from a four day stay in hospital, following what the Germans call a Shunt Revision, which I guess translates to shunt repair. I had developed an aneurysm in the shunt, and it had to be urgently repaired because there was a danger of the shunt just breaking open. It is an interesting academic exercise to think about what would happen if it did: I have five liters of blood and the rate of flow in my shunt is one liter per minute. This time round we didn't get a chance to test the outcome empirically because the surgeons quickly operated on the shunt and (hopefully) fixed it.

The OP was done under local anaesthesia under my request. This is my ninth operation. I don't like general anaesthesia and avoid it when I can. It's dangerous and I suffer much longer if I get general.
I guess I will save the next general anaesthesia operation for my next kidney transplant, imminent in 5-6 years. The price I had to pay for local was hearing them cutting into the shunt and a certain amount of pain when they pierced the shunt with various sharp implements. However, I have read somewhere reliable that pain is largely in the mind. This seems to be true. When you feel pain, you can stop to observe it objectively like an outsider. If you just let it wash over you and treat it like an exercise in observation, it doesn't have as much of an effect on you as when you react to it, as we reflexively do. I would say the pain during the OP was bearable, much less than a toe-stub, and certainly less than certain nights when I accidentally hit a nerve when I insert the needle into the shunt; on those occasions, I have to suffer 7-8 hours straight and no psychological tricks can get rid of it (falsifying my earlier statement that it's all in the mind---maybe I just haven't figured out the right trick yet).

The operation itself went smoothly, the surgeons were super-duper relaxed guys who talked non-stop during the one hour procedure and it felt like they were sitting around at at a coffee table and just chatting about inconsequential stuff. I was really impressed at how these guys can do such complicated procedures so effortlessly. I cannot even understand how one can do such an operation: they opened up half my shunt and then stitched it up again, without my losing much blood. How?? My shunt gushes out blood like a fountain when I insert or remove needles. How can one just cut open the shunt and control bleeding? Sure, they used a clamp to prevent the artery from delivering blood. No big deal. But they had to stitch together about 6 cm of opened up shunt, and stitch it so well that no blood would come out. Or almost none, as you can see below. At one point I did feel a gush of blood just flowing out of the shunt and pouring out like a shower onto my arm, but the surgeons continued to sound completely cool and relaxed, and it stopped pretty quickly.

Right after the operation

An hour or so later

Several hours later

It was really remarkable how little blood came out over the next 12 hours. And the next day I was dialyzed in the hospital with a single-needle procedure, using the shunt!!! It feels like an amazing feat of surgical skill to open up a shunt, fix it, close it up, and then use it the next day like nothing happened!

It's awe-inspiring to see such skill in action. It's so great that in surgery there is a binary outcome: success or failure. You don't need to do any BS statistics to work out if you found an effect. You either got it or you didn't get it.  Few things in life have such clarity.

Anyway, I am now finally out of hospital and hope to be able to get back to my normal life.

I must say I am very thankful to be living in such a civilized country like Germany. Thanks to the amazing medical facilities here, I can live a nearly completely normal, some would even say productive, life, despite being half blind and in total kidney failure. That privilege is not available in many other countries.

Year six of dialysis

In the flurry of the US presidential election, I didn't even realize that I have crossed the five-year mark of my dialysis. I've now entered the sixth year. So, how are things going?

The good
I'm still in very good shape for a 52 year old guy with kidney failure. On a good day I can do 200 pushups, on a bad day 100. I regularly skip rope, ride the stationary bike in the gym, lift weights, do body weight training and Iaido. I go for longish walks, either with my wife or alone. Overall, I end up spending quite a bit of time on exercise, maybe an average of 50 minutes to one hour a day. This seems like the bare minimum. If I do anything less than this, I start to lose muscle mass very fast, probably to do with the dialysis sucking out so much protein from my body. I have to accept that there is no way I can build up more muscle mass than I currently have (which is not much), and have to settle for just maintaining strength and endurance at a steady state.  It's not that I want to bulk up like those poor bozos in the gym whose brains have settled into their biceps; they have so little brain power left they have to randomly walk around the gym trying to find out where their locker is. But I wouldn't mind having a bit more muscle. My doctors are pretty amazed that I exercise; it seems I am the only one under their care who does.  They keep telling me vaguely to "take it easy", without really defining what that means, so I just ignore them.

Another good thing is dialysis in Germany. Despite the recent cut-backs in dialysis funding, the system hasn't yet become a totally dysfunctional one. There is now such a scarcity of narrow tape for taping up the needles during dialysis that nurses have to rip up a wide tape lengthwise to get the right width. Even the tubing has become much shorter, so that I have to have the dialysis machine extremely close to me when I sleep. I believe the nurses are also getting paid less. Nevertheless, I am lucky not to be living in any of the following countries: USA, France, Netherlands, Austria, Sweden. Did I mention the US? After the recent amazing discussion about how dialysis patients should be just allowed to die because they cost so much,  I want to add Japan, but maybe not just yet. Germany is still better than most of these countries. I feel very lucky to get night dialysis so that I can lead a near-normal life.

The bad
I can't think of anything bad at the moment. Oh yes, my shunt is narrowing and will need regular treatment at the hospital (every three months). They will have to regularly stick in a balloon catheter into the shunt to widen a narrowing in my armpit. It isn't much fun, but I guess things could be worse. Here too, the only really annoying thing about the procedure is having to spend a night in the hospital with other patients, who loudly talk their way through their hospital stay (see below, The Ugly).

The ugly
That's a no-brainer. It's the typical (dialysis) patient in Berlin. The typical patient in Berlin is basically an animal with no ability to think about what effect their behavior has on other people. TV: on at full volume. Music: the same. Walk around the dialysis center touching the water bottles and glasses while holding on to one's urine container. Playing the guitar loudly, singing a weirdly demented version of Stairway to Heaven at the top of their lungs. Talking loudly to fellow dialysis patients while dialyzing despite the fact that many other patients are sleeping. Jesus, who the fuck are these people? I'm trying to recall where I have seen this kind of behavior in Berlin. Oh yeah, everywhere! The definition of Berlin is Rücksichtslosigkeit. If there were a polar opposite to the consideration people show in Japan to each other, it is Berlin.

So now I have some five more years of dialysis to do before I get a transplant. I must say I am now totally willing to risk another transplant to squeeze out another 10 or so years of near-normal life.

The worst thing about dialysis in Berlin is other dialysis patients

In the last five years, I have now dialyzed all over western Europe, Japan, and the US (just two weeks or so there).  One striking difference between dialyzing in Berlin vs any other city I have been to is the sheer obnoxiousness of dialysis patients. They will either turn their TV headphones to full blast and put them on the table so they don't have to put them over their heads, or talk loudly to each other even when other patients are sleeping, talk loudly on the phone, or all of the above at the same time.  I have seen doctors sometimes try to get patients to be more considerate, but in one particular case I saw, the patient told the doctor that there is nothing the doctor could do to stop the patient from talking loudly.  In my dialysis center, one guy actually brings his guitar and walks around all over the dialysis center loudly singing and strumming his guitar. What's so special about Berliners? Why are they such assholes?

Fifth year of dialysis

So, I'm now in my fifth year of dialysis, my third year on overnight dialysis.  What has changed in these years?

1. I finally got used to night dialysis. The main challenge was getting to sleep with the noise of the dialysis machine (the machine can be very loud, these are really very old machines, not the fancy Japanese ones I saw in Tokyo and Kyoto). The other major challenge was keeping my shunt arm immobile for eight hours. I solved the sleeping problem by exhausting myself with work on the day of dialysis---I get up early and work non-stop to the point that I can't go on any more after 6PM, so that falling asleep by 9:30PM really is no problem any more. This works on most days. The shunt arm problem I solved by placing my arm on a cushion; the contact with the cushion provides enough of a cue to my brain to keep it stationary even if I am asleep. The brain is an amazing machine that can be trained to do virtually anything.

2. I have become really good at inserting my own needles. Gone are the days of failed punctures and fountains of blood. I can always get the needles in with no or almost no blood. I still occasionally mess up, but this seems to be within the bounds of normal error. My last serious error was about a year ago, when I went right through the shunt, but I have learnt to change the angle of the needle when I'm going in.

3. The skin on the shunt is getting weak from repeated puncturing. There are parts of the shunt where I cannot puncture any more or else I will bleed all night. The skin can't take any more assaults of the needle. So I have to creatively enter the shunt from the side, a bit of a challenge that I sometimes leave to the nurse.

4. Perhaps because I'm getting older, it takes much more work to retain muscular mass and fitness levels. If I don't exercise for a week, it feels as if I lost the last six months' gains instantly. This is an area that needs significantly more effort from me. I spent maybe four or five sessions a weeks, 1-1.5 hours each, exercising; once or twice a week, these sessions involve weights. Each session has about 40 minutes of core exercises (I spend most of my energy on maintaining core strength because I had a hernia operation in 2010 and never, ever want a repeat of that experience). The positive outcome of all this effort is that at least I don't have the typical potato-with-matchsticks-for-legs-and-arms look of a German professor. But I am definitely nowhere near the fitness levels when I was at my peak in my transplant days.  I am currently working with the Sports medical center at the University of Potsdam to build up an exercise program that will help me build up stamina. My goal is to get to 1.5 hours six days a week. Another measurable yardstick I set for myself is being able to do 250 pushups in multiple sets but in one exercise session. Currently I am at 150.  I will need to be very fit if I decide to get a transplant, the operation is huge stressor for the heart, and I anyway need to be very fit in order to have a decent chance of surviving till retirement. So I'm very motivated to fix the fitness problem.  One thing I don't know is: how fit can a dialysis patient get? Is there an upper limiting bound? It would be cool if I could talk to a doctor about that, but unfortunately such a doctor would have to know both about exercise science and dialysis, and such people apparently do not exist in my immediate circle.

So, now I just need to hunker down and keep going like this for another five years till I get high up enough on the transplant list. I'll be 57 years old by then, and will have to decide then whether to get a transplant.  If I get a transplant at 57 and it survives another 10 years, I could even spend the last 10 years of my working life as a nearly normal person.

In closing, I must say that I am extremely lucky to be living in Germany, and in Berlin in particular. I've seen dialysis establishments all over western Europe, US, and Japan. Almost none of them provide night dialysis; it's a huge luxury and allows me to live an almost normal life. Germany is really the only country I know (maybe apart from Japan) that really found the right balance between patient needs, sustainable medical cost, and quality of care.  A fantastic achievement.

When breath becomes air by Paul Kalanithi

This book was a very difficult one for me to read, but I could not put it down once I started. Kalanithi was a neurosurgeon who died in his late 30s from lung cancer. This book is a record of his illness. This book is not for the faint of heart, and if you have a chronic illness yourself, you should be ready to face your own fears if you read this book.

Instead of talking about the book, I will just quote some of the passages from the book that gave me pause.

I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn't know when. After the diagnosis, I knew that someday I would die, but I didn't know when. But now I knew it acutely. The problem wasn't really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

"Leave some room for a statistically improbable but still plausible outcome---a survival just above the measured 95 percent confidence interval". Is that what hope was? ... It occurred to me that my relationship with statistics changed as soon as I became one.... Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

That morning, I made a decision: I would push myself to return to the OR. Why? Because I could. Because that's who I was. Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I'm dying, until I actually die, I am still living. 

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. It felt like someone had taken away my credit card and I having to learn how to budget. 

The most obvious might be an impulse to frantic activity: to "live life to the fullest,"  to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.

His wife reports that Kalanithi made a huge effort to write this book as he slowly deteriorated.  This is the most important work I have read in many years. Everyone should read it. Healthy people who take their lives for granted, and sick people who are trying to find direction in their truncated lives.