“The experience has changed my outlook on life.”
Jenny Dale, aged 46, a crime scene investigator from Dorset, gave a kidney in 2011.
I had never had any connection with anyone with kidney failure or anything to do with organ transplants. I happened to see a news article about a three-way paired kidney donation, and the article mentioned altruistic kidney donation. At this stage I didn’t even know what altruistic kidney donation meant. I looked it up and discovered that it meant someone donating a kidney to a stranger. I had no idea that this was even possible and had never heard of anyone doing it, yet I knew immediately that this was something I felt I might be able to do. I found the website for the Human Tissue Authority (HTA) and telephoned them to ask how I might go about finding out about how to become a kidney donor.
The HTA put me onto my nearest transplant centre and gave me the contact details for the transplant nurse co-ordinators at the transplant centre (over two hours’ drive away) and a satellite centre about an hour’s drive from me. I initially made contact with the main transplant centre and was asked to write a letter explaining why I was interested in donating a kidney.
Seeing someone on the waiting list for a transplant made me want to give
In my initial letter I told them that I used to be a blood donor until a blood transfusion stopped me from being allowed to donate blood any more. I also had contact with twin brothers who both had a liver condition, which meant that one had just had a liver transplant and the other was on the waiting list for one. Seeing the effect on the families of someone living on the organ transplant waiting list made me want to do something for someone else while I could, if I was healthy enough.
Within a month of sending my letter I had my initial appointment with the transplant nurse co-ordinator and the transplant surgeon. The reason I was seen by the surgeon in the initial stages of my assessment was in case previous surgical complications might mean I was not suitable for further surgery.
At this initial appointment I was told that my previous surgery complications would not automatically bar me from donating a kidney but that, if it got to the point of donation, I would probably have to have open surgery rather than laparoscopic (“keyhole”) surgery. I had some blood tests and was given leaflets and information about kidney donation. By this point, I had done a fair amount of research and was determined that, if at all possible, I would like to change one life and give a kidney away. I was happy with the research I had done, and, if I passed all the medical tests, I was confident that I would be able to function on one kidney for the rest of my life.
A few weeks later I saw the local transplant co-ordinator and had a second set of blood tests. I also saw the renal psychologist and went through my reasons for wanting to donate a kidney, along with chatting in general about my psychological health, childhood, etc. I did feel that I was more worried about seeing a psychologist and having my mind probed than I was about the numerous medical tests which involved having my body probed!
Eight weeks after this appointment I then saw a nephrologist at my local hospital. As I understood it, her job was to make sure that I was medically fit to proceed with the next lot of investigations into my kidney health. I had a chest X-ray and ECG that day and was told that I would be fine to progress to the next stage of investigations.
Within a few weeks I had appointments for the renal dynamic scan, GFR (glomerular filtration rate – which measures how efficiently the kidneys filter the blood) and ultrasound. All these tests were done at my local hospital.
The renal dynamic scan appeared to throw up a possible problem. The right kidney’s uptake of the isotope was good but it needed an injection of diuretic to kickstart it into excreting the isotope. The radiographer wrote a report stating there was a possible “PUJO”. I had to look this up to discover it meant a “pelvi-ureteric junction obstruction”. A few days after this appointment I had a telephone call from the transplant co-ordinator to say that there appeared to be a problem with my right kidney. I was told not to worry but that I may be referred back to the nephrologist to have this investigated and that it might mean the end of my hopes to become a kidney donor. The GFR result was good, showing a GFR of 86, which was fine for donation, but the ultrasound also showed scarring on the edge of the right kidney.
By this time I felt that my chances of donating a kidney were fast disappearing. I was trying not to be too disappointed, reminding myself that if I were donating to someone in my family or a friend it would be much worse emotionally. At this point, there was no actual person on the other end, so no-one was going to be disappointed apart from myself.
On the move again
After hearing nothing for a few weeks, I then had an email to say that the surgeon had reviewed all my scan results. The scarring on the kidney turned out to be nothing more than a slight misshape of the cortex when the kidney was being formed. The surgeon was happy to take my right kidney, so things were on the move again. I was very excited to find that I may be donating a kidney after all, even though I had to remind myself I still had a few tests to go.
Another month went by and I was sent to see the local nephrologist again. This was so that I could be cleared for the final stage of investigations. He reviewed everything that had been done so far and agreed that it would be best to take my right kidney. He then referred me back to the transplant surgeon. By this stage it was six months since my first appointment with the surgeon at the very beginning of this journey.
The appointment for the final test, the CT angiogram, came through within a few weeks, and it was back to the main transplant centre for that. The CT angiogram was all clear, and there was just the question of why the renal dynamic scan had showed a possible obstruction three months before.
At an appointment the following month, the surgeon decided to consult with a radiologist as to which test to do to find out once and for all if there was any problem with the right kidney. The vein on the right kidney was very short, which might make removing and transplanting it difficult. He suggested a test called an IVU (intravenous urogram) scan, and they would let me know if and when this might happen.
It was later decided that I would have a repeat of the test taken three months ago at my local hospital (the renal dynamic scan). This time it would be done at the transplant centre.
Seeing the independent assessor
The same day that I saw the surgeon, I also saw an independent assessor. Her job was to make sure that I fully understood the risks I was taking in offering to donate a kidney and to check my motives. She also had to see proof of my identity. After half an hour’s chat, she said she would write her report the next day but that there would be nothing detrimental in it which might make the HTA refuse to allow me to donate. The HTA panel’s approval came through two weeks later. I walked round that day with a big smile on my face. One more hurdle to go, the repeat renal dynamic scan, and I was closer than ever to my goal.
Finally, nine months after my first appointment, I had the repeat scan. By this time, after changing their minds several times about which kidney to take and which one I would keep, it had been decided that they would only take the right kidney or none at all. This meant that if the final scan showed any problem, I would still not be able to donate, after getting so close.
It was not long before I had the final test repeated. I was told to ring four days later when the surgeons would have been able to review the scan results. That was a long wait, and I was on tenterhooks when I phoned that day. The news was the best I could have hoped for: the surgeons were very happy with the scan results and would take my right kidney (despite the short vein). I was to be put into the database the very next day and would be contacted as soon as they had a potential match.
My details go on a database to find a match
Finally, after 10 months of assessments, I knew that I was going to donate a kidney. I can’t describe the feeling of elation after all this time, to know that someone out there was one day soon going to have my kidney. It was the most incredible feeling in the world.
Things moved pretty quickly after that. I was soon matched with a kidney patient. Our blood cross-match test was negative (which meant we were compatible), but unfortunately the patient fell ill and was unable to undergo the operation. I was very upset when I heard, as I had not expected this to happen. I was put back in for another match straight away, and was matched with another patient. Again, blood samples were taken for cross-matching, and we were a negative cross-match, meaning that this time it could all go ahead.
Surgery was booked for both of us for about four weeks ahead. Life seemed to go on hold after the previous few weeks of blood tests, phone calls and emails. It felt very strange going to work and living as normal, knowing what was about to happen.
But those few weeks flew by, and before I knew it I was in the hospital being prepared for surgery.
On the day of the surgery, I was surprised to find I wasn’t nervous about what was going to happen. The medical team were really lovely and reassuring. I was asked yet again while in the anaesthetic room whether I wanted to back out. I told them to just put me to sleep and go ahead! I woke up in the recovery room and was told that my kidney was out and on its way to its destination. A few hours later I was told that the kidney had arrived safely and was in its new owner and producing urine. It was the most surreal thing I have ever been told. It made the whole process so worthwhile. I could hardly believe that, after all this time, the kidney was finally in someone else and working.
I had quite a difficult nine days in hospital after the kidney removal, which was challenging at times. I had open surgery, which took a while to recover from, but six weeks after the operation I am at home, doing really well, and would not know that I only had one kidney (apart from the 9 inch scar across my ribs). I have heard from the hospital that the recipient is doing really well, which is brilliant news.
I feel I have gained a huge amount from the experience
The whole experience was the most amazing and eye-opening time of my life. I have made what I hope are lifelong friends in the hospital, both kidney donors and recipients. The experience has changed my outlook in life and made me appreciate my health, my family and my life in general. I feel that I have gained a huge amount from the whole experience and, despite finding the surgery and subsequent stay in hospital quite challenging and difficult at times, would not change a thing. I wish I could put into a few words how rewarding it was and how privileged and humbled I feel at being allowed to be an altruistic kidney donor.