'I'm so thankful to be alive'
Our health experience:A dialysis patient whose sister was an incompatible donor got help when both registered on a UK database
I first got sick in September 2009 and took leave from my job as a teacher. I had a virus that I just wasn’t recovering from. We thought it might be post-viral syndrome but then by Christmas I became extremely ill. My body was retaining very high levels of fluids and my blood pressure was dangerously high. I went into St Vincent’s Hospital on December 23rd and was told the next day that I had end-stage kidney failure. I went home for Christmas but was back in hospital on December 27th for lots of tests including kidney biopsies.
At this point, I was also diagnosed with Wegener’s disease, an autoimmune disease in which the body develops antibodies to its own organs. I was immediately put on strong immunosuppressant medication and high doses of steroids.
Exhausting and frightening
I started on dialysis in early January 2010, moving on to three-hourly sessions three times a week. I found dialysis exhausting and very frightening initially but I got used to it. The medical care I received in both St Vincent’s and the Beacon Hospital renal units was outstanding. The HSE look after dialysis patients very well and there is great camaraderie between patients who are on dialysis at the same time.
Basically, the dialysis machine does the job of the failed kidneys – clearing out all toxins from your body. But, of course it can’t do as good a job as the kidneys and you have to be very careful about what you eat and how much you drink while you are on dialysis. I had to give up most dairy foods, cut out salt and eat less green vegetables and fruit, which I found very difficult. I was on dialysis for 2½ years.
In November 2010, we first started investigating our options for a kidney transplant. Right from when I first was diagnosed with kidney failure, my younger sister Jane said she would be a very willing live donor. Unlike my husband, Richard, she had the same blood group as me. She went to Beaumont Hospital where the transplant team assessed if she was a match for me. Unfortunately, three weeks later, we were told that although she was perfectly healthy and able to be a living donor, she wasn’t a match.
Having heard about the paired pooled donor scheme, Jane, a scientist/lecturer in genetics at Trinity College Dublin, was fortunately able to make contact with a nephrologist, Garrett Jones, in the Royal Free Hospital in London. He told her more about the UK database of living donor pairs where incompatible living donors and potential transplant recipients are pooled to allow for two, three or four-way swaps.