transplant week 2011

Barry and Karen Ackerley

Meet Karen Ackerley and Barry, her husband, who has been waiting for a kidney match for five years.

Barry has suffered with renal problems since he was a teenager, and initially had home haemodialysis for 2 years from the age of 19 to 21, when he received a cadaveric kidney. This was a very successful transplant and he had 16 years of living a ‘normal’ life. In January 2006, aged 37, his transplanted kidney started to fail and he was placed on the transplant list. In August that year his kidney failed and he was again started on haemodialysis, initially in the hospital, but after only a couple of months was able to do dialyse at home. He has been on home haemodialysis now for almost 5 years, dialysing 5hrs every other day, and can manage to live a relatively normal life, working 3 days a week and enjoying family days out and holidays. However, we always have to consider when/where Barry can dialyse which can sometimes restrict what and where we would really like to go do.

Several of Barry’s immediate family and friends offered to donate a kidney, but unfortunately none have been a match. I already knew that I wasn’t a match, as Barry is O -ve and I am A +ve, but in 2008 we found out about the paired scheme, and realised that this was probably going to be the best way for Barry to get a well matched kidney. However because of Barry’s blood group and previous transplant, he has developed antibodies which so far are proving difficult to match.

In January 2009 we travelled to Coventry in the hope of having a non-matching transplant, but even after a course of plasma-phoresis and immunosuppressant’s, Barry’s antibodies could still not be reduced to a safe level to allow the transplant to go ahead, and the operation was cancelled on the day it was due to go ahead. This was a very emotional and stressful time for us both, our children and families as we thought it was going to be new start for us. The treatment also made Barry feel quite poorly and he was unable to work for several months afterwards.

At the beginning of June this year we got the call that a good match had been found on the paired scheme, and the live donor co-ordinators were very positive about the possible outcomes, even discussing dates that the surgery might go ahead. We had to go for blood tests which were arranged for the following week, but unfortunately, 2 weeks later we got a second call saying that the results of the test once again showed that Barry’s antibodies again were too high and that the donor organ would have been rejected.

We have been on the rollercoaster of emotions twice now, thinking that a transplant was imminent, but then having our hopes dashed at the next hurdle. This is obviously emotionally draining on both Barry & I, and also our family & friends. We have 4 children between us, and each time we think it is going to be a new start for us all with no restrictions.

In my work as the outpatient manager at Rochdale Infirmary I have come across many patients over the years in need of transplants, and now also know the day to day implications of waiting for ‘that’ call. Not only do I understand it from my husband’s illness, but also my dad has been lucky enough to have a lifesaving liver transplant in November 2005. The transplant has been very successful, without which, he would not have been here today, and we are forever grateful to the donor and their family for their generosity.

I would do anything to help promote the need for people to join the organ donor register, as I has first hand experience of how restricted life can be for someone waiting for a transplant. I hope that by reading our story, people might be encouraged to join the donor register, and maybe even consider joining the paired kidney donor scheme.