Well, I've been on holiday for a week and on the first day away I was called and given my tissue typing result. It seems that I'm a perfect match for Tim and, as it happens, I already knew that Nick was also a perfect match. We had had a discusion about which of us potential donors should be tested first. Nick had realised that logically it would be better if I took precedence as he and Tim run a company together, whereas I'm retired; I wasn't going to argue as I had always felt in my bones that this had my name on it (as I've mentioned before).
So, a week ago I called Nick to confirm that decision and then rang the transplant co-ordinator at Tim's hospital. Having told her of our decision I rather expected that things would start to happen fairly quickly. Back from holiday yesterday I rang the transplant co-ordinator at my local hospital; she knew the tissue typing result but had not been told of our decision! I'm very glad that I rang her as it would have been annoying if nothing had happened for a few weeks before someone realised that communications had failed - you can see why things can take longer than you expect. I think that one has to take charge of this sort of thing and not be a passive patient. Anyway, now she will sort out the next step and very soon I'll be back there for a whole set of tests in a single day.
I think their process is that having found a donor who passes all the tests, they wait until the recipient's GFR drops to 15% then schedule the operation so it's done before it gets to 10%. His last figure was 19% and they cannot predict whether it will stay around there for ages or suddenly fall. Of course, we don't know if I will pass all the tests so I think we should get on with this soonest, thus leaving plenty of time for other volunteers to be tested as required.
NB I'm still not sure why the cross-matching hasn't been done yet. I think they said they'll do it later but it seems to me quite important that my blood doesn't get attacked by his!
Showing posts with label tissue type. Show all posts
Showing posts with label tissue type. Show all posts
Friday 25 May 2012
Thursday 3 May 2012
Now I'm properly in this process
At last, I have had the first interview plus had a load of blood samples taken. It seemed to me that things were going a bit slowly so it was good to spend a couple of hours at my local hospital's transplant centre and get things started properly. It's also quite a funny feeling going for a hospital appointment when you are not actually unwell at all; then you get treated very well, as though you are valuable and an important person - is this now a mark of the NHS for all patients or are donors given special treatment? It was when I saw a stamp on my documents saying "Potential Live Donor" that I realised that perhaps a live donor is indeed valuable not just to the recipient but to the NHS, due to the fact that the donation will save the NHS thousands in the coming years.
I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process. The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now. He spent most of last year stable in the mid 20s. I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10. If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).
So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching. This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time. If just one of us is suitable then there's no real decision as we are both already willing and committed. If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer. I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative).
One question which was asked yesterday was how I felt about the idea. This is very hard to put into words, but I have no worries and no concerns. Why would I not offer? Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc. By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards. I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling. To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering. I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason. Why would I not want my brother to be healthy?
I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process. The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now. He spent most of last year stable in the mid 20s. I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10. If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).
So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching. This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time. If just one of us is suitable then there's no real decision as we are both already willing and committed. If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer. I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative).
One question which was asked yesterday was how I felt about the idea. This is very hard to put into words, but I have no worries and no concerns. Why would I not offer? Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc. By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards. I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling. To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering. I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason. Why would I not want my brother to be healthy?
Monday 23 April 2012
Diverted by a Colonoscopy
Well, I could now give full details of what is involved in a colonoscopy, but I'll spare you the details. Suffice it to say that it's quite odd seeing your own insides on a TV screen. The staff were all wonderful and I have nothing but praise for the way I have been treated at the local hospitals. The procedure itself actually wasn't too bad - the worst bit was the preparation for it when you twice swallow a solution of magnesium citrate. If you know what that does, then you will share my discomfort; if you don't know, google it and be happy it's not you.
They removed a single polyp from me and that had to be sent for biopsy. I was told that it looked OK based on the doctor's knowledge and experience of these things, and it was duly confirmed as "normal" just over a week later. They'll want me to go through the whole thing again in three years just to see if anything has changed. So, right now, I'm fit and healthy after that scare and I'm back on track in the kidney donor process.
The speed of this whole thing has been remarkable: I had the letter with the failure result on a Wednesday, was seen for assessment the following Tuesday, underwent the (slightly unpleasant) "further investigation" on the Thursday of the week following and received the biopsy result eight days later (if no samples are taken then you are told you're clear at once). That made 23 days from start to finish, including Easter. I certainly cannot complain about the NHS!
I understand that the next step is tissue typing and cross-matching to see if my brother and I are compatible. The transplant nurse in London has persuaded another local hospital near here to do this to save me trips to London and this is now booked for next week. If this is OK then there are lots more tests they want to do, about which I have no detailed knowledge at present. I know they will also want to assess me mentally to make sure I know what I'm doing and also to be sure that I'm not being paid...!
In the colonoscopy preparation meeting I was asked how I felt about the situation. I didn't really know at first but realized that in fact I was quite annoyed as the threat of cancer was getting in the way of the possibility of helping my brother. That question did make me wonder about how I felt about undergoing a (personally unnecessary) major operation voluntarily, even to help my younger brother. To my surprise I realized that I'm not in the least bit fazed about it; it just seems part of life in the same way that I accepted the possibility of having cancer myself. You've got to die of something, after all!
They removed a single polyp from me and that had to be sent for biopsy. I was told that it looked OK based on the doctor's knowledge and experience of these things, and it was duly confirmed as "normal" just over a week later. They'll want me to go through the whole thing again in three years just to see if anything has changed. So, right now, I'm fit and healthy after that scare and I'm back on track in the kidney donor process.
The speed of this whole thing has been remarkable: I had the letter with the failure result on a Wednesday, was seen for assessment the following Tuesday, underwent the (slightly unpleasant) "further investigation" on the Thursday of the week following and received the biopsy result eight days later (if no samples are taken then you are told you're clear at once). That made 23 days from start to finish, including Easter. I certainly cannot complain about the NHS!
I understand that the next step is tissue typing and cross-matching to see if my brother and I are compatible. The transplant nurse in London has persuaded another local hospital near here to do this to save me trips to London and this is now booked for next week. If this is OK then there are lots more tests they want to do, about which I have no detailed knowledge at present. I know they will also want to assess me mentally to make sure I know what I'm doing and also to be sure that I'm not being paid...!
In the colonoscopy preparation meeting I was asked how I felt about the situation. I didn't really know at first but realized that in fact I was quite annoyed as the threat of cancer was getting in the way of the possibility of helping my brother. That question did make me wonder about how I felt about undergoing a (personally unnecessary) major operation voluntarily, even to help my younger brother. To my surprise I realized that I'm not in the least bit fazed about it; it just seems part of life in the same way that I accepted the possibility of having cancer myself. You've got to die of something, after all!
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