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.
Amazingly, John Hollian, a consultant nephrologist – who worked with my consultant at St Vincent’s Hospital, Prof Alan Watson – had previously worked at the Royal Free Hospital. They agreed to support Jane and me to go on this database.
We were very excited about this because not only would it increase our chances of getting a suitable kidney for me but it would allow another person on kidney dialysis to benefit from Jane’s healthy kidney. Kidney transplants also save a huge amount of money for the HSE because dialysis is so costly. Jane was medically approved for the scheme in December 2010.
Operations cancelled
Unfortunately, my condition worsened significantly in the next few months. I developed another autoimmune disease called sarcoidosis in which my calcium levels were mal-regulated. I had to go on high-dose steroids again to stabilise the condition. I wasn’t well enough to be placed on the paired pooled kidney donation database until July 2011. We missed what’s called the “shuffle” of data that month and had to wait until October 2011 to see if a paired match could be found for us.
A match was found and Jane and I and both our husbands went to London. November 23rd was designated as the date for the four surgeries – Jane’s and mine in London and the other couple’s in another hospital in England.
Unfortunately, by the time the day came, I wasn’t well enough and all four operations had to be cancelled. I still had sarcoidosis and had developed idiopathic thrombocytopenia, a condition that can result in a life-threatening bleed. We started to wonder if I would ever be well enough for a transplant. But I rallied and we were given a second date for the operations – January 25th, 2012. Yet again, I wasn’t well enough. Although we had no personal contact with the other paired donor/potential recipient, I began to worry that we’d lose them. Finally, we were given a third date on March 21st, and everybody was healthy and well to proceed with the surgeries.
Jane, her husband John, Richard and I travelled to London. I had to get extra dialysis before I left Dublin and then another session the day before surgery to make sure I was in good condition. The surgeries to remove the kidneys from the living donors took place at exactly the same time in different hospitals and then the kidneys were couriered to me and the other kidney recipient so that our operations could take place as soon as possible.
Jane came through her surgery without difficulty and her children came to visit her in hospital the next day, and they all went out for a hot chocolate together. She was back at work five to six weeks later. Thankfully it turned out to be a straightforward procedure and I will be eternally grateful to my sister for what she has done.
Exciting journey
When I woke up from surgery, I was immediately told that the new kidney was working well as I had already urinated – something I hadn’t done for over two years. However, I had to stay in hospital for about four weeks due to other complications and eventually I made the exciting journey back home on April 14th.
Since then, I have improved quickly and it feels like a miracle. I go into St Vincent’s every six weeks for check-ups. Since June, I have been able to swim in the sea again, which is wonderful. I feel like I have my normal energy levels back and a heavy fuzziness in my head has totally lifted. I am so thankful to be alive, to have another shot at life, to see my children grow up and to be a useful member of society again. I am looking forward to Christmas this year in a way I never did before.
The Living Donor: Jane Farrar
I knew right from the start when my sister, Sydna, became ill that I would willingly donate a kidney to her. When I wasn’t a match for her, I was keen to find another way that it could work.
So when we found out about the paired donor/recipient scheme in the Royal Free Hospital in London, we were immediately keen to partake. I think it opens up more options for people in Ireland who need a kidney transplant and can’t find a suitable living or deceased donor in this country.
The Living Donor is medically and psychologically checked out before being accepted on any donor register. In fact, only one in eight people who offer their kidneys for donation is accepted. Fortunately, I was fit and healthy. Admittedly, I was a little nervous the night before surgery. The next morning, it felt very strange to be walking down the corridor for surgery, chatting to the surgeon.
The care provided by each of the transplant teams in Beaumont, Vincent’s and the Royal Free Hospital was simply wonderful.
It has been a real privilege to give a kidney to someone else and to watch my sister recover – and see the colour and life return to her eyes. It’s not often that you can radically transform someone’s life. Overall, it was a very smooth process.
