IgA Nephropathy and me: Update 1

It’s been a couple of months since I last wrote about this and I have recently been asked how things are going. So, here’s an update.

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The intravenous iron made virtually no difference to my blood count; it raised it from a low of 8.7 to 9.1. The doctors weren’t happy about this. My kidney function has been steady at 15% for the last few months but I am now having EPO injections every week. I am possibly more drugged up than Lance Armstrong. Okay, maybe not... EPO should improve my blood count and two weeks ago it was up to a giddy 9.8 (A healthy chap my age should have a blood count of around 15)

My two brothers and my sister have had their cross matching results back and it is very good news. There are six tests and they look for positive reactions (which are bad) when they mix together the blood samples. A good result is six “zeros”. One of my brothers and my sister came out with those six zeros, which is unusual, even between siblings, so that was a pretty good result. The other brother’s result was three “1’s” which, if he was the only donor available, would still be okay to go ahead with a transplant.

As male kidneys are larger than female kidneys (you learn something every day here, eh?) it was decided that my brother will go forward as the donor, with my sister standing by as first reserve.

So in four weeks time my brother is off to Oxford Churchill Hospital again for a whole raft of more tests: Ultrasound (to check that he does have two kidneys – did you know that some people only have the one?), an ECG to check out that he’s fit enough for the operation, and an MRI scan with radioactive tracer to see how many arteries feed his kidneys (apparently the more there are, the riskier the operation – if too many then my sister comes in for testing). He will also be having discussions with a Nephrologist and the Transplant Surgeon.

I’m off to Oxford a few days later for a seminar on Kidney Transplants, to meet up with people who have had transplants already and others who are looking for one. All this is so that I know what I am getting myself into, which is no bad thing.

Donors and recipients have separate doctors advising them, so that there can be no pressure on either party to go ahead and the advice everyone gets is totally tailored to their own needs.

Having said that, my brother is keen to let me know what is happening at his end of things. He has been told that if everything checks out okay for him concerning all the tests, his doctor has told him that the transplant could happen about six weeks after his results are known.

Of course, all this is dependent upon my own Renal Consultant saying “yes” to the transplant going ahead. He is keen for me to hang onto my own kidneys for as long as possible as transplanted kidneys have a limited lifespan, because of all the anti-rejection drugs you have to take after the transplant. The good thing about perfectly matching kidneys is that their expected life after transplant is at the top end of the scale.

So, if my Consultant says “Hang on for a while with the transplant until more degeneration occurs” then at least the EPO injections should get me across Scotland in a better state than I was in on this year’s Challenge.

I am unbelievably lucky to have brothers and sisters who are willing to go through with this and also to have perfect matches. I've been on EPO now for four weeks and so that should make me feel less knackered until I can go for the op.

Well, that was all a bit lengthy and technical. Sorry about that! Either way, I should be okay for the Challenge in 2013. I would prefer to have the transplant and get it over with, but we’ll have to see what my consultant says when I see him again in four weeks time.

We live in interesting times.

 

27th OCTOBER UPDATE:

I’ve been injecting myself with EPO for four weeks and my blood count has risen from a May low of 8.7 to 9.8 after two weeks and is now at 10.7 so things are looking up on that front. However, kidney function has started to decline again and is now down to 13.8% and potassium levels rising, which apparently is not uncommon when using EPO but should be monitored closely.