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.
Monday, December 26, 2016
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.