Once we'd all decided that it was going to be me to donate the kidney, I had a whole series of tests to go through. These were to establish whether I was fit enough to be able to live until at least the age of 80 on one kidney and whether my kidney was good enough to pass on. We were 50% compatible, which is good enough. It's apparently much better for a kidney to come from a living donor. My tests involved much giving of blood, urine, checking my BMI and blood pressure, x-rays, CT scans, injections with radioactive stuff. An ultrasound scan revealed that my right kidney had a cyst on it. This meant that all plans were delayed for a year, to see whether this cyst developed into anything else - it didn't. The presence of blood in my urine meant that I had to have further tests to make sure that my bladder and prostate were ok. This resulted in the most horrific part of the whole procedure - a cystoscopy. Read on!
This involves inserting a camera into the bladder via the penis. When you are taken into a separate room to have the procedure explained to you, you know something is going to hurt!. When the procedure takes place with 5 members of staff present that is confirmed. The agony lasted a couple of seconds as they squirted anaesthetic into my penis. It was excruciating but soon over. For some strange reason I had parked a mile away from the hospital (I hate paying to park!). I emerged desperate for a wee, in agony. I walked that mile, had another wee. Drove back to school, stopped halfway for another wee. Stopped just before school. A couple of days later all soreness had gone and at least the thorough probe showed that I was fine.
Further delays happened because, partly to get my kidney fit and help me through the operation, I had taken up cycling. This reduced my BMI and "significant weight loss" (not really, only half a stone or so) meant that I had to have a few more tests and scans.
By November 2012 all was clear and we were waiting for a date, this came through, with about a month's notice, for the 10th January. I had plenty of time to organise cover for my classes. Both our schools have been extremely supportive throughout all this and I am very grateful.
A few weeks before the operation we went to Birmingham to see the surgeon. Everything seemed to go well but when I got back the local hospital said that he had been in touch because I hadn't asked enough questions and therefore was depressed. They sent me a depression quiz to fill in. Ironically, I could have answered yes to many of those questions, but that was to do with my work, not the operation, so that's what I put on the form. I'm sure I was positive on that day. I didn't ask questions because I'd read about everything and just wanted it all to be over. I must have passed the test because we visited the hospital the week before the operation for some final tests.
How did I prepare for this? I'm fairly strong, mentally and physically. I exercised as much as I could. I told myself that I was going to go through this and be alright. Once I'd made the decision I didn't feel any fear. There's no heroism in that - I had made the decision and there was no going back, the rest was just making sure I was strong enough to get through it all and looking forward to being fully fit again. I was sacrificing a few months of full fitness to achieve something really worthwhile. So I convinced myself I could go through with it so convincingly that I knew everything would be ok. Luckily for me, so far it has been.
I did feel trapped by the situation and if you asked me whether I wanted one or two kidneys my answer would be two thank you very much. But I needed to help my son and here was an opportunity to do some absolute good.
Throughout all of this my son has been the real hero. He went through everything without complaint, without self-pity, often comforting those upset by his situation. He kept up his full time job while having dialysis three times a week. He never asked me or anyone else to donate. Indeed, if we had discussed it too much he might have refused to accept it.
Thursday 28 February 2013
Donating a kidney: diagnosis
I thought I'd write about what I've been through recently, in the hope of it being useful to any who find themselves in a similar situation. I suppose each person's experience is different, but there must be similarities.
Anyway, 3 years ago my son joined us for a holiday in Scotland. My wife and I had already been there for a few days, walking in the hills and we were hoping my son would enjoy doing the same, the way he has done in the past.
This time, however was different. He seemed much less fit than us. Instead of walking a mile or so ahead, he was getting further and further behind. My wife was worried. I tried to shrug it off, thinking that it had been a long time since he had been away with us, he was doing a PGCE course and had little time to exercise.
As one final walk we made it up to the top of Ben Starav:
As a photo on the way up, with my son just about visible, this would be normal. But this was on the way down.
Back to his PGCE course he went. His illness got worse. He described it as feeling that his whole body was shutting down, which it was. He hardly ever slept. One visit to his doctor left him with a false diagnosis of depression. No criticism here just yet - he was fit and healthy and not a typical victim of kidney disease. Many of the symptoms - a sense of impending doom for instance - are similar. But when he asked for a blood test the doctor refused, saying "You're a teacher, you're depressed". That mistake and refusal of a simple request could have been fatal. When telling his mentor at school how ill he felt and how little he slept he was told something along the lines of "this is what it takes to be a teacher, if you can't stand the heat..."
Nevertheless, he passed his PGCE and got a great job which would mean him moving back in with us.
On his return my wife insisted he ask our doctor for a blood test. This was given and hours later we received a call which basically said "take him to hospital, now". He had suffered near total kidney failure and was on his way to a heart attack.
It was awful to see him in hospital, various lines attached to him. I felt guilty about brushing things off a few months earlier. It became clear that dialysis was not a permanent solution - it leads to a possible reduction of 20 years in life expectancy. Waiting for a transplant from the normal list could take years. A better way would be for a living donor to turn up - I knew it would be me and for some strange reason I knew it would be my left kidney.
Anyway, 3 years ago my son joined us for a holiday in Scotland. My wife and I had already been there for a few days, walking in the hills and we were hoping my son would enjoy doing the same, the way he has done in the past.
This time, however was different. He seemed much less fit than us. Instead of walking a mile or so ahead, he was getting further and further behind. My wife was worried. I tried to shrug it off, thinking that it had been a long time since he had been away with us, he was doing a PGCE course and had little time to exercise.
As one final walk we made it up to the top of Ben Starav:
As a photo on the way up, with my son just about visible, this would be normal. But this was on the way down.
Back to his PGCE course he went. His illness got worse. He described it as feeling that his whole body was shutting down, which it was. He hardly ever slept. One visit to his doctor left him with a false diagnosis of depression. No criticism here just yet - he was fit and healthy and not a typical victim of kidney disease. Many of the symptoms - a sense of impending doom for instance - are similar. But when he asked for a blood test the doctor refused, saying "You're a teacher, you're depressed". That mistake and refusal of a simple request could have been fatal. When telling his mentor at school how ill he felt and how little he slept he was told something along the lines of "this is what it takes to be a teacher, if you can't stand the heat..."
Nevertheless, he passed his PGCE and got a great job which would mean him moving back in with us.
On his return my wife insisted he ask our doctor for a blood test. This was given and hours later we received a call which basically said "take him to hospital, now". He had suffered near total kidney failure and was on his way to a heart attack.
It was awful to see him in hospital, various lines attached to him. I felt guilty about brushing things off a few months earlier. It became clear that dialysis was not a permanent solution - it leads to a possible reduction of 20 years in life expectancy. Waiting for a transplant from the normal list could take years. A better way would be for a living donor to turn up - I knew it would be me and for some strange reason I knew it would be my left kidney.
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