Transplant paperwork has been submitted

[michelle5656]

Hi all,

I had my left kidney removed in 2015 and at that my remaining kidney came out with a gfr of 20 (it was about 26-29 before the op so I saw this as a great success). Then in July 2018 I dropped down to 12% and felt terrible. Since then I’ve bubbled betw15 and 17%. In order to try and avoid dialysis I’m lucky to have my husband, mum and brother all agree to be tested to be living donors. Has anyone else been through this process? I’ve seen lots of stories where parents aren’t a suitable donor but I don’t know what the likelihood is of one of these three being a good match. Any views? Also are there levels of a “good match”? Can some matches be bette than others?

[gilders]

Hi Michelle, I'm currently awaiting transplant of a donated kidney from my father.

I was under the impression that you had to have a matching blood GROUP from at least one of your parents, but double checked before I replied to you. In fact, it is not guaranteed that you will match one of your parents. But the odds are very good that you will have a match.

But blood groups aren't the only potential stumbling block. You may have antibodies against the potential donor (I have many antibodies due to requiring multiple blood transfusions). In my case, because the tissue match was good, the transplant can still go ahead, but I will require extra immunosuppression.

When it come to the Human Leukocyte Antigen (HLA) test, I believe that a child will always be a close enough match for a live transplant. But this test will still be carried and this is where a very few people may find out that what they believed to be their biological parents are actually not.

With the supportive, generous family that you have, there's an excellent chance of receiving a kidney direct from one of them. I also was lucky enough to have more than one donor. It was suggested that I accept my father's for a couple of reasons. Firstly, being my father, a match was highly likely and secondly (this is quite blunt) the other donors are more likely to be alive and fit enough to donate for a longer period then my dad, i.e. when my transplanted kidney from my dad eventually fails, I'll have back -up options.

If you can not receive a transplant direct from your family, then all of them can be involved in the paired/pooled donation scheme and the more donors you have, the greater the chance of you receiving a match.

I won't name the hospital that has been involved with my transplant process, but I've not being happy with them. Dialysis and transplant was discussed over 3 years ago. It took just over a year for my first appointment with the transplant coordinators. Approximately 13 months after my first appointment I was told that the transplant would completed in approx. 6 weeks. In fact, I didn't even get to see the transplant team until 6 MONTHS later. At this point I was told it would be about 8 weeks until transplant. I'm now due to see the surgeon 8 MONTHS after my last appointment and I'm told that the operation, itself, will take place approx. 6 weeks later.

[michelle5656 in reply to gilders]

Thanks gliders for the reply. Wow - your hospital is taking it’s time!

I’ve heard back on the blood from my husband (we match) but not on tissue type yet. My mum and brother are being tested at a different hospital and they’ve had quiet a wait for appointments too. It’s very frustrating.