Paul hopes research finds new treatments after four kidney transplants and four rejections
A 43-year-old software engineer is supporting our Transforming Treatments campaign after having four kidney transplants, four rejections and 20 years of dialysis.
Paul Cookson from Cambridge knows how challenging living with kidney failure can be having suffered kidneys problems since birth.
As a baby he had an operation to re-implant his badly positioned ureter (which carries urine from the kidney to the bladder), but after an infection his kidneys failed.
Doctors kept me going with transfusions
“I narrowly avoided dialysis as a child,” he explains.
“The doctors kept me going with diets and blood transfusions. Then I had my first transplant when I was seven years old. Not a lot of places were doing paediatric renal care, but I was lucky to get transferred to Guy’s Hospital – my dad heard about Guy’s on the radio.”
By the time he was 15, Paul’s first transplant was failing and he needed another new kidney.
Immunosuppressants try to stop the immune system attacking a transplanted organ with antibodies. In Paul’s case the antibodies won the fight and his second kidney transplant failed.
Thankfully, a third transplant attempt a little later was successful. Paul went to university, on a strict programme of medication and regular check ups. But eight years on, his third transplant failed, and Paul was back to square one, after he contracted shingles encephalitis.
Shingles spread to brain
“That was quite touch and go,” he recalls. “The shingles had spread to my brain. The doctors didn’t know whether I would actually survive. I did, but my transplant didn’t.”
Paul now had a big adjustment to make, coping with life on dialysis and it’s not been easy. “I have had depression at times, I’ve also seen a psychologist to help me as well,” he says.
“I have dialysis at hospital in the evenings so I can work and do a 9 to 5 job. Most weekends I can get a bit worn out after about 10 hours on the machine in all during the week
I doubt I can have a fifth transplant
“I tend to have a bit of a nap on the machine when I’m exhausted. I have had some issues when my blood pressure has dropped and I can get leg cramps, which can get quite annoying.”
It was 14 years before Paul had his fourth transplant. He was warned that his previous transplants and blood transfusions meant his antibody levels were now very high, making it difficult to find a matching kidney.
“My consultant decided they would try removing some of the antibody matching criteria to increase my chances of getting a match, with the plan being to tackle any problematic antibodies after the transplant. I agreed to go ahead.”
Sadly, it didn’t pay off, and rejection started happening within a week of his operation. Doctors tried replacing the plasma part of his blood containing the antibodies, but his blood became too thin and his blood vessels kept leaking.
“The plasma exchanges were risking my life, so they decided to stop,” he explains. “They couldn’t save the kidney. The chances of me ever having another transplant are probably very slim. Unless some new treatment comes along – you never know where research will go,” he said.
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