Post transplant life
I've found some interesting observations since my transplant.
First is the issue of weight. My father was frequently told by doctors to put on weight - but never could. I spent 60 years of life eating whatever I wanted and never gaining weight. Even though my stomach is larger than normal, that was shown by scans to be related to cysts - there was no fat involved.
Before the transplant I had my kidney removed - 1.3kg (1 kg heavier than normal). After the transplant I had my wife's normal kidney - plus a bit of swelling, etc. I was also on various medications - including steroids - plus I had pedal oedema. However after some months I realised the extra weight I was gaining was more than just this. My body was putting on weight.
This was quite a shock - coming after 60 years when this never affected me. I've managed to get my weight back down a bit nearer my weight following the transplant. However, it's meant I've joined the masses - eat too much and exercise too little and my weight goes up.
I have to be careful with food anyway - having my immune system suppressed means all sorts of care is required. I cannot calcium for two hours either side of pills I take at 9.30 morning and evening - goodbye cereal breakfast.
A second issue is blood pressure. I've been on blood pressure pills since my stroke. Since the transplant, these have been reduced until I'm now off them - although the doctors tell me I should be on a minimum regular dose to reduce my risks. I guess that's not too surprising - blood pressure is one of six functions of the kidney. However my blood pressure is quite variable - and usually low.
Because I was on blood pressure pills for so long, I didn't know what abnormal blood pressure feels like. I still don't know what high blood pressure really feels like - but what I had been thinking was exhaustion turns out to have been mainly low blood pressure. This realisation came about almost accidentally - but was confirmed by checking my blood pressure each time I felt bad.
We're still working on this - but I know on those rare days when my blood pressure stays up a little from what is regarded as "best" I get a ot more done.
Still a work in progress - but for young people with poly-cystic kidneys, learn to listen to your body, and have regular blood pressure checks. I have come across people saying more research needs to be done on people who have high blood pressure mid-life and low blood pressure later. That suggests I'm not alone.