Poly-cystic kidney disease was something I didn't know I had until I had a stroke at nearly 53. Even then the doctors nearly missed it. And I wasn't really with it when the doctor explained it to me. All I heard was I'd probably die within a year. Some weeks later my wife realised I had this idea, and explained the doctor was talking about my kidneys. Turns out he was wrong - it was nearly six years before I had to go onto dialysis.
This is not a summary of everything I've learned, but was prompted by an article my daughter forwarded to me. If you have, or know someone who has PKD the article can perhaps be hard reading. It's one man's journey, and if I've learned anything from my health journey, it's that everyone's experience is different.
I had the same kidney specialist from the start until after my transplant. She helped a lot - but she also assumed I was "normal" (friends will vouch for the fact that I've never been "normal"). This nearly cost my life when for 10 months living was so uncomfortable I eventually decided that when the time came I wouldn't take dialysis. I don't support euthanasia, but not taking treatment would achieve the same thing.
One day the supermarket was out of the cheapest milk, so we looked around. We decided to try the new lactose free milk. My wife had been off milk for years due to her lactose intolerance, so we'd see she handled it. In the even she stayed off milk - but within two days, I was free of my symptoms.
That was my second time I've been going to die. In some ways this has brought me face to face with death, and as in the article, I'm OK with it. I hope to live until I'm 70, and I'd quite like to live to 73. But death is not a tragedy. I will be sorry to leave my wife behind (I want to stay alive as long as reasonable to show her I really do value her kidney she gave me ????). But as the apostle Paul said, "For to me, to live is Christ and to die is gain."
The first thing I note in the article is the author displays a sense of humour - or at least irony. "That’s a lot of folks—about fifty million worldwide. So you’re not alone. Feel better? Na, me neither." Or "The term “flank pain” describes the feeling about like the term “mild discomfort” describes giving birth." Having spent way too much of my time in hospitals since my stroke, and particularly during my time on dialysis, I've met some wonderful people. They reinforced my view that even the worst times (and mine haven't been as bad as a lot face through health and other issues) can bring growth in ways "good" times can't.
One little thing most people might skip over is his mention of shoulder pain. I've talked with various doctors and no-one has identified the cause of this, but it's possible he's explained another this issue for me. But the term pain is a bit severe for me. There has been very little real pain for me - more discomfort, apart from when I bend just a little the wrong way. I'm getting better at not doing that, so seldom get real pain.
I experience more pain from the heart bypass I had before the transplant. Even when home from hospital it wasn't great for a while. Fortunately the time I laughed so much I had to stand to breathe - and then fainted briefly (but enough to fall to the ground) didn't really hurt. I've had some minor nausea occasionally, but I wouldn't have even thought of relating it to PKD.
The same applies to his descriptions of sitting, sleeping and constipation (I've had problems the other way - that's when I discovered probiotics).
His discussion of exercise is interesting. I have developed AF (Atrial Fibrillation), and a problem with my autonomic nervous system which drops my blood pressure at the least exercise, so keeping fit is difficult. I've lost over a kilo of weight in a year with these two things at work, although I had them longer - they just weren't diagnosed. This is another case where my former kidney specialist 's advice (just push through it) probably wasn't the most helpful.
The notes on energy and working were interesting. As an internally motivated type A personality, that's possibly the hardest - especially when my wife has to do things I could do. I identified with "I run into a wall about 3 in the afternoon". It's been hard to accept, but slowing down (more mentally than physically) has been an invaluable discipline.
When I had my stroke I was badly affected. When I came home, my wife set up my laptop so I could read emails. After I read the first, I asked her how I got to the second. And so on. And the next day was not much better. I continued improving bit by bit. After 2.5 years I had a major recovery - in hindsight even more than I thought. The declining kidney meant my brain wasn't getting enough blood. Dialysis improved things Effectively I went from 10% to 20% kidney function, and the difference for my mind was significant. Of course the transplant was another whole level again.
One thing about dialysis he mentions that might seem slight is cramps. Let me say it's not - but there are ways to minimise it. Cramps are brought on by dialysis (and subsequently I've been on medication for oedema which has similar effects) removing magnesium with the fluid. That's why magnesium is my main non-prescription medication. (The other is probiotics periodically). My cramps used to hit at 2-3 am on dialysis nights - not the best way to wake up. A lady there had a transplant nearly two decade earlier. When she came back to dialysis, she had the worst cramps I've seen - while she was in the chair (and therefore unable to move much).
Apart from magnesium (after before going to bed), I got a kidney specialist on the unit to look at my numbers. He agreed they were probably taking too much fluid off, so added a couple of kilos to my target weight. As well I learned to control my own machine. Instead of the usual even flow, I eventually developed a rhythm (using a time on my laptop to remind me) of turning off fluid removal periodically, decreasing during the evening. It was trial and error - each person is unique - but eventually cramps were just an occasional nuisance, much to my wife's relief.
There are problems with dialysis and transplants - but from my time with a more normal kidney function and despite the immuno-supressants, etc., it's brilliant. And without it I wouldn't be writing this - instead of contemplating dying I'd be writing about it from the other side ????.
I appreciated his to-do list - except for grow a garden. I guess he doesn't have clay soil where he is - but working the small garden we have had at times is for me a bridge too far. However keeping reasonably fit from as early as possible is crucial. It's not just the obvious things. My first fistula (a vein and artery joined for dialysis) didn't work - so I had it in my dominant arm instead. This made it that little bit harder to do things during dialysis. The reduced functioning in my nerves (reducing blood my pressure) means I cannot do what I once did. While not down to dialysis, it adds to the complexity of life. There is so much I want to do, but I've learned the hard way I need to pace myself. I am me - no-one else.