Transplants - a long story

well where do I start - the begining I suppose
After many years of controlled renal failure through diet and medication i started Dialysis, Haemo then CAPD. After only 12 months I received my first transplant (1990), a cadaveric one which we had to cancel my wedding for, if things weren't stressful enough. Everything went swimmingly well and I was out of hospital in Leeds, UK after 2 weeks and had around 18 months of dialysis free life and could support my family whilst in work. Then over a period of time I began to notice I wasn't feeling as good as I should and realised it was the begining of the end for this transplant - eventually it failed even though the consultants tried all they could to stop the rejection and I ended up back on Haemo as CAPD wasn't for me due to work and getting up at 4 am with 5 bag changes a day.

Some 4/5 years later I received my second transplant which I could not believe how lucky I was. I can still remember the day I got the call around 2am in the morning, funny how it always happens in the middle of the morning isn't it

The day after going in for all the usual tests i received the kidney which unfortunately failed to work at all. If memory serves me well I was in hospital for well over 3 months and contracted the dreaded MRSA and was treated like a leper with nusrsing staff coming in looking like someting from Star Wars

, oh and i had to have a course of that medication for CMV. After many tests and biopsies it was determined that it wasn't going to work and I was duly sent down to the Operating Theatre for its removal and it was once again back onto dialysis.

It was around 4 years again until I got the third call for a transplant, little was I to know this would be a different story altogether. we made our was yo the hospital, again in the middle of the night! and settled down for the following days transplant - everything went swimmingl well apart from it not working again (I wondered what I must have done in a previous life). Yet another 3/4 months were spent in the transplant ward being needled in every place imaginable

It was once again determined that this transplant was not viable either and I was carted off down to the theatre for a nephrectomy. A day or two after the nephrectomy, which I was told it needed to come out sharpish as it was splitting and would have caused considerable damage if left any longer, I was told I had MRSA again but this time I was left with an open wound - a great big 8/10 inch scar in length and some 3 inches wide (no kidding). I had daily nursing assistance in cleaning it with packing soaked in Hartmens solution and plenty of Tegaderm coverings - let me tell you it aint no fun removing that every day, now I know what you girls go through with waxing and you have my full sympathy!! I was also dailysing most days through all this and became very down when I saw a dialysis machine being brought into the ward, I used to urge them to go straight past which when it did I sighed with glee.

After a long time in the ward I was allowed to go home and dialyse in a satellite unit although I still had daily assistance from a community nurse with dressings. it took some time for the wound to heal properly and I was left with a god damn ugly scar and no belly button a it was a central incision they had used.

I then spent some time getting myself fit and healthy to go back on the transplant list but after a conversation with my brother he offered me his kidney which I was overwhelmed by and made sure that he was fully aware of what it entailed and the possible consequences. After around 18 months of work up involving tests with venflon needles in both ankes at the same time among other things we went into Hospital just befoer Xmas. The surgeon who I knew very well cam into the room and gave both me and my brother some worrying news. His exact words were looking at the scan pictures "who told you you could do this?" After explaining everything I had been told in previous meetings he asked for the consultant to come upto the room, unfortunately he had gone back to India which was lucky for him, both my brother and I would have ripped him apart!

I am not sure how Live donor transplants work in USA but in England the donor goes down first with recipient called for sometime later. Because of the previous transplants and the state of my blood vessels the only way for this transplant to work was to do the opposite to see if it was possible for it to go ahead and then call for my brother - so off I went once again on the long trolley dash to theatre not knowing when I woke up whether or not I would have a viable kidney. It turned out I was down there some 11 hours but came round with a fully working kidney

It later transpired that I would need a short treatment on plasmapheresis (sorry about spelling) as some antibodies had been detected which weren't earlier so I had this done which entails doing some dialysis for 4 hours and then having replacement white cells over another 4 hours or so. this one off treatment ended up with many weeks of it and I became so low and susceptable to infections i was again treated like a leper but worse was to come. After a trip to the toilet I burst my stitches and was spurting fluid from the top of my stomach - after sorting me ot I was sent for many tests and scans to find out the depth of the problem. It transpired i had developed a fistula around my gut and had to be nil by mouth for some weeks only being fed by tube into my vein. As this also couldn't be closed up I was again covered in tegaderm with an appliance similar to those that stoma patients use collecting any fluid that came out - again MRSA set in - I eventually got out an had around 6 months of dialysis free life until this one failed and that takes me to where I am today on dialysis but giving the transplants a miss.

I feel as though I have been extremely lucky to have been given not one but 4 chances of near normal life but yet unlucky to have had them all fail. The people I feel for, along with my brother, are my daughter and wife who have stuck with me through all this trauma, working fulltime and at home and then coming to see me most nights wasn't easy especially when I was in a foul grumpy mood and I thank her for everything she has done and does. My daughter has not known a dad who can take part in activities with her but I have tried where possible to do things together as a family and I will continue to try to do so.

I now have to get used to a life on dialysis and as i said in the getting to know you thread it wont get me down and I will keep on going - would I take another chance at transplant, you bet if i was given it.