Jenny: The experience has changed my outlook on life

Jenny Dale Photo

Jenny, a crime scene investigator from Dorset, gave a kidney to a stranger 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.

The preliminaries

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.

A setback

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.

Operation day

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.