“My mum was diagnosed with gradual kidney failure a few years ago now, and at the beginning of 2007 she began her dialysis treatment and was placed onto the Kidney Donor Waiting List. My first thought was to put myself forward to be a direct donor for her, I felt that I was lucky to be at a stage of my life, with no dependents and a company that was very supportive, where I could offer to do this. Unfortunately we quickly found out that I was not the right blood group to be able to do a direct donation, Mum is blood group O so only someone from that group too would be suitable. It was at this stage that the Live Donor Transplant Nurses at the hospital told me about the paired exchange scheme. It was something I was immediately keen to sign up for, to me it is as simple as me giving a kidney direct to my mum, well at least the end result is the same thing, and a bonus is that another person benefits too.
I had to go through a few small (and painless) tests at the hospital and I was pleased to be given the all clear and have us entered onto the register. The staff there have been really kind throughout the whole time I have been in contact and are always there to answer any questions I have, they give you all the information you need and ensure that you are making the decision independently and understand the whole process.
So now we are on the list, it’s just a case of sitting back and waiting really, the cross checks are run nationally every 3 months, and we hope that we will be one of the lucky pair that finds a match soon. For now though I’m just pleased that mum is on both registers, the solo one and the paired one, and this really does give her the best opportunity to get a donor as soon as possible. Me personally well I’m just happy to have the chance to do my bit to support her at this time. I’d encourage anyone who is interested to contact their hospital, the more people on the register the better everyone’s chance is.”
UPDATE: ABO Incompatible Treatment – Ends in a Successful Transplant.
On Friday 23 April 2010, Evelyn Godley’s wait for a kidney transplant finally came to an end. But surprisingly the organ came from a donor who had previously been told they were not a suitable match!
Evelyn’s daughter Helen, 32, had put herself forward to be a donor several years before when she found out that her mum needed a transplant. But after initial tests revealed that they were an incompatible blood group match (Evelyn is Group O and Helen Group A), they both believed that a direct transplant was never going to be possible. Keen to explore all options available they registered on the paired donor list and were initially excited when a match was made on their second run. Unfortunately this match was not to proceed, so they went back to normal life, waiting and hoping. However things were about to change, and whilst in Australia, for a friends wedding, in January this year, Helen received a call from her sister Alice to say that the MRI had been in touch.
“I was thrilled when my sister told me that the hospital had been in touch and were proposing a new option for us. I couldn’t wait to get home to find out more about what was involved.” Three weeks later Evelyn and Helen were sat at the hospital with two other couples whilst the whole procedure was explained to them. Alice says: “We’d heard about ABO Incompatible treatments before, but had heard that they could be quite aggressive and uncomfortable to go through.” The staff at the MRI explained that things had now moved on. The new treatment shouldn’t cause any real discomfort to the recipient and the treatment period was short. A couple of weeks later the Godley family were given the good news that they had been chosen as the most suitable candidates to undertake the treatment.
Helen explained: “From then on it moved pretty rapidly, both myself and Mum underwent additional tests, including extra blood samples to use during the treatment. We saw the independent assessor and met the surgeon. Everything for me proceeded just as it would if we were involved in a normal transplant.” The ABO Incompatible treatment is normally done over a period of two weeks, where the recipient visits the MRI every other day for treatment, this lasts approximately 4 hours. However, in Evelyn’s case, the treatment period was condensed into one week, this was due to the surgical date which had now been decided upon. She visited the hospital everyday for a week and moved her usual dialysis treatment from Macclesfield hospital to the MRI to cut down travelling time.
Alice remembers that week: “It was a busy week for Mum, quite tiring with long days spent at the MRI. But throughout it we were all feeling optimistic and happy that she was getting this opportunity.” It was only on the morning of the operation itself that the family found out that Evelyn’s levels had come down enough to allow the op to proceed. Helen said: “It was such a relief, we knew all the way though the build-up that at anytime the doctors might discover that the treatment wasn’t working for Mum, or other obstacles may come up. Now we were ready to just get on and do it!”
The transplant went ahead exactly the same as any other live donor transplant. First Helen was taken into surgery and once the kidney had been successfully removed, Evelyn followed her down. “Alice stayed at the hospital with us all day, she was there early to give me moral support before the operation, and was by my bedside when I woke up to tell me how Mum was getting on. With all the running around she did that day, I think she actually had the toughest job out of all three of us!” The operation was successful and the following day both Evelyn and Helen were already beginning to recover. Helen was discharged four days later and even managed to get to her friends wedding one week after the operation! Evelyn stayed in hospital for a few extra days whilst staff monitored her levels, but nobody could believe how quickly she was improving. After leaving hospital Evelyn went to stay with her elder daughter Alice for a few days. Alice says: “It is important for both donor and recipient to have someone they can stay with for a few days after the operation for support, both emotional and practical. We decided it would be a bit cramped here with both staying with us, so Helen went to a friends house whilst Mum came to us.” Helen agrees: “I couldn’t have been a donor for my mum without the support I have had from so many people. My work were fantastic allowing me to have the time off and friends and family have rallied round us both to help us through.”
Five months on and everything is looking good for the Godleys. Helen returned to work after a month off and Evelyn is relishing her new found freedom and time. “Although my full recovery has been a gradual process, it has truly changed my life. The staff at the hospital have been so supportive and helpful. We couldn’t have hoped for a better outcome.”