HTA approval given to donate a kidney – Finding a recipient
My transplant coordinator asked if there were any dates I may not be available for the operation and when was best for me. Once I was registered at UK Transplant things could happen quite quickly so it was important I was not registered at until we were ready. I had a couple of dates that I wanted to avoid otherwise a clear calendar. My family were fine for things to proceed also. My details were then registered at UK Transplant.
The recipient is selected for blood type matching, tissue match, age, length of time on waiting list and various other medical / non medical factors, all of which are there to make the system as fair as possible and also to select the best match to reduce any chance of rejection.
Do not think that once you get to the stage of HTA approval that everything will be straightforward. It may not be. It was not for me. I made the mistake of assuming it would all now be plain sailing but we still had a few hurdles to get over and it was quite an emotional time for me.
Once I had been informed my details had gone onto the database I was telephone a couple days later to say a possible match had been found. Due to the other hospital not being able to process the tissue type matching etc early, an appointment to give blood was not immediately available. Once my blood is given it is rushed to the other centre asap (same day I believe) for the tests to be done. It seemed a long wait, but then the day came. I went and gave blood, came home and then waited. This was on a Monday. I really didn’t know how long I would have to wait and it is always the unknown that puts you on edge. Then on Thursday I had a call from my coordinator, who asked if I was sitting down. Unfortunately the person was not a good match and so had been rejected as a recipient. Can you imagine the joy they must feel to know there is a kidney, then to be told it was a no-go. I was not expecting this and found it extremely upsetting. I could not hold the tears back, it really did knock me back a bit. Later my co-ordinator rang to see if I was okay and she explained that the recipient would have been told it may not be a match but at least they know the system works, and having been called once, they know another call would eventually come.
A few days later another recipient was found and the blood sample was booked for a few days later. I gave blood and again, came home and waited. A week went by and I began to worry again. We were told they would have the results in a further couple of days. Nothing! Eventually my coordinator rang to say the other centre apologises very much but they need more blood. They need to make further checks. A couple days later I went and gave about 8 tubes of blood, so they had plenty. Few days later, a phone call ….. I was asked … was I sitting down again!
I was getting rather depressed with this. I wasn’t prepared for potential recipients being rejected. One was bad enough, but two! I couldn’t believe this was happening. I thought once the HTA approval was given, everything would be straight forward. Most times I am sure it is.
We then had another potential recipient – I gave more blood. Surely third time lucky? I was however prepared for another rejection. I told myself that God knew who was going to get my kidney and I just had to be patient and the right person would be found. A few days later .. yes!!!!! They were a match. I was over the moon. This time I was crying with sheer delight. In speaking with my coordinator she said that it was not unusual for a recipient not to be a close enough match. They had to be as sure as they could be that the kidney would not be rejected. The potential recipients would have been told by their center that this might happen. Later I found out from a recipient in my hospital that she had been called four times before she was a match for a kidney/pancreas transplant. How stressful must that be.
An operation date was set for 3 weeks time. Gosh that now seemed very soon. The regulations state that you have to have final pre op assessment checks within 2 weeks of the operation and this was booked for 9 days before the operation.
I could not be happier. At times I felt this day would never arrive but at last it was all falling into place.
It was strange, but now I had a recipient I suddenly felt responsible and very protective over my kidney. I found I was being very careful with things I did so as not to injure myself. I kept away from people I knew had the sniffles in case I caught a cold from them! To have had the operation date postponed because I had caught a cold or whatever was just unthinkable. Can you imagine how awful that would be for the recipient! I felt just like I did when I was pregnant and knew I had this very precious life inside me that I had to protect. I now felt I had to protect this kidney.
I also would talk to my kidney. Yes I know, silly, but ….! I even named it. I called it Charlie. I did not know who my kidney was going to, but if a woman then my kidney would be called Charlotte and if going to a man then Charles, so Charlie seems a good compromise. I would put my hand on my back where my right kidney would be and I would Pray to God and ask Him to give this kidney a healthy long life in its new owner. I would speak to my kidney (yes they did give me a psychiatric evaluation!!) and tell Charlie how special it was and how it had to work really hard in its new home as it had a very special job to do and to try and keep nice and healthy. Crazy I know …. !!
Next Post: Living Donor Pre Assessment Clinic
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