Wanted Dead or Alive: A kidney donor

According to all I’ve heard a transplant preferably from a close relative & live donor is best option for replacing my ailing kidney function.

My lovely wife who by the merest chance has the same blood group has offered to be the live donor. She and I are being worked up (worked over) to see if a preemptive transplant is feasible. This is preferable to starting on dialysis and transplanting later and we've been told couples have the best outcome.

It does present me with a problem however. What if after all the pain and suffering my body rejects her kidney. How will I feel about the possible shortening of her life for no gain; more importantly how will she feel? What if it only works for a year or two before throwing in the trowel? Will it still seem worth it then; will it affect our marriage?

One always supposes it won't but that's easy to say while the event is only academic.

The test themselves are another threat. Anything wrong with either of us will kill the idea, stone cold dead in the market.

The doctors are of course looking to see if we are healthy enough to undergo the procedures but what if they find something we didn’t know about and probably don’t want to know about. I for instance might not have known about my failing kidney’s if I hadn’t been a regular blood donor. A blood pressure spike sent me to the doctor then to a heart specialist then to a kidney specialist, that spike was the only symptom I had at the time.

As of this post I’m ambivalent about the results of the work up. I hope my wife is healthy enough to donate but I’m not sure I’m prepared to take it from her. A bridge yet to be crossed - we are not there yet .

Organ rejection is another problem, and the chance of it remains as long as you have the ‘not you’ kidney embedded in you. The body’s defence forces (curiously called anti-bodies - perhaps they should be called pro-bodies) will try to exorcise the organ they see as ‘not you’ To counteract this I will have to take immuno-suppressant drugs daily which will give me ‘greater susceptibility to illnesses' as it says in my glossy "take control" brochure.

As I understand this, I’m allowing foreigners to set up an embassy within my borders and giving diplomatic immunity to anyone who comes and goes therein leaving me open to invasion.

The benefit is that life, after a successful operation and recovery period, should resume as normal. I should feel better than I have in a long time and have more energy. This I find difficult to comprehend. I don’t now, nor have I ever, felt as unwell as I’m supposed to with 17% kidney function. Apparently the slowness of the failure ( years in making - cast of one ) allows the body to adapt until it reaches a tipping point, and then suddenly you will feel very ill.

I am lucky to be ahead of the game.

Peri - what dialysis?

Hands up who knows what peritoneal dialysis is? Probably only those who have had to confront renal failure have any idea. I'd never heard of it a couple of weeks ago when my wife and I went for dialysis counseling. What I did know was that Dialysis, in saving my life, was going to ruin it.

After the kidney removal op we did a last chance three month world tour on the assumption that overseas travel would out when I went on dialysis (in 2 - 5 years.) Dialysis would tie me to a hospital 3 days a week 4 hours at a time. Its actually worse than that. There is travel time to and from, waiting, setting up and recovery time. In reality I will lose three whole days a week.

This is Haemodialysis. For this to work a shunt is created in my arm by joining an artery to a vein; back pressure swells it so they they can get the twin needles in. (inlet & outlet). I started to faint just looking at the pictures. How the hell am I going to cope with that. Pass me another jelly-bean.

Then we were shown the graph of what will happen in my blood, the build up of waste and pressure which may make me feel lousy until just before dialysis. This up down cycle is not really good for me and it's worse on weekends because they only dialyse on Mon, Wed and Fri. I may well feel like shit on Monday and it will probably take longer. After a while my kidney will dry up from lack of use, I will stop peeing and have to go on a restricted fluid intake.

This was the first option presented to me. It was also the only dialysis I was aware of and to say I was not impressed is putting it succinctly. It seems to me they told about the worst option first so I would feel relieved when I heard about Peritoneal Dialysis. PD for short.

Trust me, I was incredibly relieved - no needles - do it at home - 15- 20 minutes - 4 times a day.

That last gave me pause; I knew there would be a catch. Then again three meals and supper is four lots of 15 minutes in a day. That dost not sound so bad dost it? Very few diet and fluid restrictions, less ups and downs and its portable so we can still travel. Yippee! I cant wait --- uh? Hang about, this is still serious. I'm still dying here and being kept alive by this artificial procedure.

And of course nothing is ever quite that simple. I have to be fitted with a permanent catheter ( I just knew they'd find a way to let the surgeons in on this) and I'm going to be two kilos heavier from the 2 litres of fluid I have to carry around in my abdomen, to be precise in my peritoneal cavity - the bag that holds all my organs together. I have to have a storehouse for the boxes of 2 litre bags, a work area for the exchange and I have to bloody careful.

When they told me there was a risk of infection I assumed they were talking about the exit site of the drain pipe hanging out my underdaks - where the tube meets the skin but no, the danger here is internal infection; something getting back down the tube into my PC (that's peritoneal cavity not personal computer). Apparently if I so much as drop my catheter on any surface when its uncapped I have to report it immediately and I will be given antibiotics - it's that bad.

Still it may well be worth it because once I have mastered this procedure I will be given a machine that does the whole lot overnight; plug in - go to sleep - wake up - unplug - get on with life - now we're talking the same language. Oh! and they supply the bags anywhere in the world anytime free of charge.

There is of course another even better option - Transplant
I'm looking into it.

Life, the Kidney & Everything.

In recent years I kidded myself my life wasn't yet half over, that the best was yet to come, It's harder to do now. It presupposes I would live to 124, and that life would go on pretty much the same. The operation to remove a kidney and the potentially malignant growth attached should have been a wake up call.

I ignored it, I hit the snooze button and went back to sleep.

It is I suppose human nature to forget the pain and the fear. The growth on my kidney, predicted to be 95% cancerous, turned out benign. The relief brought tears to my eyes. I was not going to die. I felt saved, in total ignorance of the salient facts:

1. I was left with one kidney
2. It was polycystic.
3. My post op function was 23% and decreasing.

My specialist had predicted (even before the operation as I remember it) I would need dialysis in 2-5 years. I ignored that too. It wasn't going to happen to me I told myself - but I knew it was bullshit. The ache in my side which led to the discovery and removal of the growth never really left me. Pain from the operational scar disguised it. As I got further from the op the ache receded became so gentle that any other minor pain or mental distraction could hide it. I can now sometimes convince myself it has gone or that it is unrelated to my failing kidney or that it was never there except in my imagination. Such is the power of self delusion.

I have at the same time become sensitive to every nuance of health, wondering if this or that slight change is a sign of the coming end for without doubt the end is coming. At 17% function I have been counseled to look at the future scenarios, transplant, dialysis or death. The last is not negotiable - I haven't finished my novel yet.