I was diagnosed with chronic kidney disease about six or seven years ago. Initially there was no obvious change in the way I felt, but over time my kidney function got worse and worse until I couldn’t help but notice the difference. I became lethargic and never had energy for anything. I found myself making excuses to avoid doing anything physical, even just going for walks with friends – something I would normally love doing.
My kidneys continued to deteriorate over time, and I was added to the kidney transplant waiting list in 2021.
My wife, Carolyn, wanted to donate a kidney to me, but was not a match for me. That’s when they told us about the UK Living Kidney Sharing Scheme – she could donate her kidney to someone who was a better match for it, and in return I’d get a better matching kidney myself. Carolyn underwent a barrage of tests which took about 8 months before she was given the go ahead. We both thought it made total sense, so put ourselves into the scheme.
It took a few of the sharing scheme’s matching runs before a suitable match was found for us. Sadly however, on the first match my donor had to withdraw due to a new illness. It felt like a real setback after waiting for so long and having my hopes raised!
I was also on the waiting list for a deceased donor, so every time the phone rang and it was a ‘private number’ my heart would race, thinking ‘is this the call for transplant?’.
All the while my kidneys were still getting worse. At this point they were at about 12% function and still gradually but constantly reducing. I was really fearful about having to start dialysis and all the commitment and issues that it would entail.
I prepared myself for another long wait, but amazingly another matching kidney donor was identified in the very next run only a few months later! I was told that they were an excellent match for me, which was so fantastic to hear.
We went into hospital the day before my transplant was due to happen. At the very last minute, the doctors did some final checks and told me that they had identified a problem. My blood wasn’t clotting well, and it would be too risky to operate under my current state.
For us to be told to get dressed and head home was a huge blow to us all, as you can imagine. The nearest example I can think of is the sense of loss experienced when a close friend or member of the family passes away. It was that bad. In hindsight we knew it was the right decision though.
The next few days were really difficult to deal with for both of us. I think we only got through them with the love, prayers, and support of our wonderful family and church friends.
With thoughts of having to start dialysis constantly on my mind and my kidney function continuing its horrible steady decline, I received a wonderful call from the transplant coordinator to say that the other parties in the matching scheme had agreed to stay together while I my clotting issue was looked at, and a new transplant date was arranged. The rollercoaster continued!
