Perspectives - Keith Pointon
A Life with Kidney Failure
When I was 24 I was told I'd need a kidney transplant. This wasn't a shock or even much of a surprise since I'd been seeing consultants every few months for my kidney and heart problems since I was a young child.
At birth I was diagnosed with psuedo prune-belly (Eagle-Barrett) syndrome which affects the lower intestines and stomach muscles. I had slightly deformed kidneys which suffered a serious infection during my first few days and, as such, I was left with around 30% kidney function.
Throughout my childhood I was in and out of hospital for various surgeries including open heart surgery at age 4. Doctors and nurses were always part of my life. During my teens and through puberty my kidney function deteriorated rapidly and though I was outwardly a fairly normal, albeit small and under-weight, child – I played football (badly), I joined in with my friends and went to school, college and eventually university. During university my health got worse but I still went out with friends and went abroad whenever I could. I think it was due to my lifelong illness that even when I was told my function had dropped to about 15% I was still heading out to pubs and clubs – I'd got so used to feeling ill after meals and more tired than “normal” people that I hardly noticed it!
After I finished university, in 1999, I decided I wanted to see a bit more of the world. I spoke to my consultant who advised against it – my kidneys were failing more rapidly and were now down to around 12% function. After agreeing to have blood tests half way through my trip I left for a 6 month round-the-world adventure in spring 2000. Having a blood test in Australia after 3 months was quite an experience: The doctors office in Cairns called my hostel to tell me to get to the nearest hospital immediately but after I discussed the results with them I discovered that my function was, in fact, slightly higher than normal.
Once I returned home I was told that finally I would have to go on dialysis until a donor was found. I discussed various options with the consultant and nurses but decided that CAPD would be best for me. When I told my family that dialysis and a transplant was necessary their response was an immediate and amazing: “Well, we better get tested to see who's the best match”.
In March 2001 I had the operation to put a catheter into my peritoneum and my bedroom was converted into a mini CAPD unit. Boxes of CAPD fluid were piled up on my parents landing and I started to get used to a life on dialysis. Luckily, at the time, I was working at a small local business who were extremely supportive and agreed that I could work part time while on dialysis. My daily routine became dialysis twice in the morning, work during the afternoon, home by 5:30 for the evening dialysis and then 10:00pm for over night dialysis. I had no problems on CAPD but I was extremely fastidious about cleaning everything and probably very lucky as well.
CAPD was a life saver for me. I was able to get out and see friends, work part-time and even go on holiday. I spent a week in France at a villa with a load of friends and the bags of dialysis fluid was delivered to the house before I arrived. I couldn't swim in the pool but I was able to join in with my friends with all the other activities. Including (not recommended) having a few drinks – the overnight dialysis seemed to screen out the alcohol effectively...
During my time on dialysis I had various offers of a kidney from friends and family but in the end my father was deemed to be the best match. He had a few minor medical conditions that were treated over the next year and I finally got a live transplant in April 2002. I know I was extremely lucky to have such a supportive family and friends and even work colleagues but I had always been open about my illness so everyone knew what was happening.
The live transplant went very well. My dad was out of hospital within a few days and, after a minor
rejection worry, I was home in about 10 days. My hospital bed was easy to spot: surrounded with fruit juice and pizza takeaway boxes, I had been enjoying all the foods I hadn't been able to eat whilst on dialysis! It took a further 3 months of recuperation before I was back at work full time but I felt fantastic. More energy, confidence and free of dialysis – I felt better than I had for years after my long and slow decline since childhood. And now, 14 years later almost to the day (27th April) I have had no serious problems. I take several pills a day, work full time, see the (amazing) renal team at the Royal Free in London every 3 – 4 months and live as close to a normal life as possible. Most people I meet have no idea I'm even slightly ill and are always surprised when they catch me taking out my little pill holder whilst at work or in a bar or restaurant on an evening out.
So, why have I written this? After reading through various items about kidney failure and dialysis and all the problems associated with it I wanted to share a positive account. I'm not going to be running marathons anytime soon but I keep healthy and enjoy my life and I think that's important to share.