My brother and I went to the hospital together today, for the first time, for our tissue typing cross match tests.
It was a different experience. My brother doesn't talk much about his illness or how it effects his life and how he feels about it. He openly he admitted that he still feels like it is happening to someone else.
I didn't realise just how many tablets he has to take each day and what the side effects of both the meds and the illness were. He has to take 16 pills everyday, some of which are bicarbonate of soda tablets to help keep his potassium levels in check. He wasn't at all shy in admitting that they make him fart and burp a lot.
He is tired a lot of the time and gets horrendous pangs of nausea often. The nurse said that these are the early signs of renal failure, which of course gave me a lump in my throat.
My brother and I both had to give blood, to be sent off to Guys in London to be tested. My brother went first. The nurse took about 12 test tubes of blood from us both. Neither my brother or I are particularly fond of needles, so the nurse did a great job of distracting us by talking to us about tissue incompatible transplants.
As I have said before, my brother would need to have a treatment called plasma exchange to strip his blood of any antibodies that will react with mine. The risks are increased with an incompatible transplant. We will receive the results of this latest test in a week, the results of which will determine what will happen next.
If the results come back positive, then we will have to evaluate the risks involved and whether this type of transplant is the best course of action.
If the results come back negative, then we will both have to undergo some more tests and travel to Guys to meet with the consultants.
Now, my brother isn't exactly thrilled at the idea of the plasma exchange and I don't particularly want him to have to go through any extra procedures that could be avoided. However, is adamant that he want's to avoid dialysis, as he will lose a lot of his quality of life, by being being strapped up to a machine 4 hours a day, 3 days a week.
So the option of entering the paired scheme has come again. Mainly because, we could find a donor that is blood compatible, which would make the whole process a little easier on my brother. There are however some drawbacks to the scheme. They only do 4 matching runs a year, plus the fact that I'm blood group AB (the rare one) and can only donate to another AB, narrows our chances of getting a match quickly which could increase the need for him to go on Dialysis.
Last time this was discussed, both my brother and I had reservations about both receiving and donating kidneys from and to strangers. However, while I still have these reservations, my brother's mind has changed. This nurse did say however, that one of the patients who received a kidney from their father, felt a great sense of responsibility and felt he had to be extra careful, so as not to waste the gift he had be given. Something that I had thought about, previously. She went on to say, that when this same patient needed a second transplant, and his mother was unable to donate, they opted for the paired scheme. The recipient said he felt much more relaxed with a strangers kidney, as he didn't know the donor, and could go on to live the life he wanted. Something, which I hadn't considered.
Whichever way we decide to go I will still be helping my brother. I guess I just need to get my head around the idea of giving my kidney to a stranger and never knowing where it went.
We will now what for the results and go from there.
UPDATE: We were given the results the next day - they were negative. This is good because it means we can continue with the blood incompatible transplant only and not blood & tissue incompatible which is riskier!
