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?
Thursday 3 May 2012
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!
Wednesday 4 April 2012
The Rocky Road
Somehow I didn't think that this would be easy. The decision to offer a kidney to my brother was easy I thought but, as a pretty fit person all my life, I was not ready for what has occurred almost concurrently:
I passed 60 quite recently, and as a result was invited to participate in a bowel cancer screening programme. My first samples (I won't go into details!) were rated as "unclear" so they asked me to do another set which were "normal" but, just to be sure, I was asked to do a third set of samples. This came back last week as "abnormal", together with an invitation to attend a meeting at my local hospital. This meeting was yesterday (they don't hang around!) and I am now booked in for a colonoscopy on Thursday next week (that sounds like a bundle of laughs).
It turned out that my sample results actually were encouragingly low: on the first set, only one out of six showed any symptoms, and it was the same on the third set. Thus I have reached this situation on the least possible amount of positive results, i.e. just two out of eighteen. Apparently 2% of people on this routine screening get an abnormal result: five of every ten who have a colonoscopy have no further issue; four of every ten have some other cause like piles or polyps, and just one in ten actually has bowel cancer. Immediately after the colonoscopy you are told if they have taken any samples for biopsy - if not you are clear. Biopsy results are available within a week, so either way I will know the results within twenty three days of getting the original letter, which is pretty good I think. We are all too readily critical of the NHS, in my view.
In the meantime, I have already spoken to the transplant nurse and explained the situation. She will progress the question of tissue samples with my local hospital and then we await the outcome of the colonoscopy. If I'm OK, I can then get back on this road to becoming a live transplant donor, which should then be a bit less rocky!
I passed 60 quite recently, and as a result was invited to participate in a bowel cancer screening programme. My first samples (I won't go into details!) were rated as "unclear" so they asked me to do another set which were "normal" but, just to be sure, I was asked to do a third set of samples. This came back last week as "abnormal", together with an invitation to attend a meeting at my local hospital. This meeting was yesterday (they don't hang around!) and I am now booked in for a colonoscopy on Thursday next week (that sounds like a bundle of laughs).
It turned out that my sample results actually were encouragingly low: on the first set, only one out of six showed any symptoms, and it was the same on the third set. Thus I have reached this situation on the least possible amount of positive results, i.e. just two out of eighteen. Apparently 2% of people on this routine screening get an abnormal result: five of every ten who have a colonoscopy have no further issue; four of every ten have some other cause like piles or polyps, and just one in ten actually has bowel cancer. Immediately after the colonoscopy you are told if they have taken any samples for biopsy - if not you are clear. Biopsy results are available within a week, so either way I will know the results within twenty three days of getting the original letter, which is pretty good I think. We are all too readily critical of the NHS, in my view.
In the meantime, I have already spoken to the transplant nurse and explained the situation. She will progress the question of tissue samples with my local hospital and then we await the outcome of the colonoscopy. If I'm OK, I can then get back on this road to becoming a live transplant donor, which should then be a bit less rocky!
Saturday 31 March 2012
The Situation Moves on
The current crisis came to a head when my brother went for a routine check-up a few weeks ago. Six weeks after the previous one, his kidney function (eGFR) was found to have fallen by a further 3% to only 18%. It seems that a transplant is usually desirable when it reaches 10%, so he hasn't got far to go if it carries on deteriorating at that rate.
The first requirement for a donor is to be of the right blood group. My brother is O Pos and I knew anyway that I am O Pos as well, as it was embossed on the HM Forces ID card for 16 years (and hopefully is correct!). My wife has also volunteered and she knows she is O Pos, being a long-standing blood donor. The other didn't know and had to find out; it turns out that just one other potential donor is also O Pos, but various other siblings have been ruled out, so at present there are three of us on the list. NB I found out later that the Rhesus Negative/Positive bit is irrelevant to kidney transplants.
The next step is matching tissue types. This can be done at any hospital which would save me a 60 mile each way trip, so I'll see what happens after I have spoken to the transplant nurse on Monday
There is a lot about this process which I don't know, but I found the Kidney Research UK website to be very helpful.
The first requirement for a donor is to be of the right blood group. My brother is O Pos and I knew anyway that I am O Pos as well, as it was embossed on the HM Forces ID card for 16 years (and hopefully is correct!). My wife has also volunteered and she knows she is O Pos, being a long-standing blood donor. The other didn't know and had to find out; it turns out that just one other potential donor is also O Pos, but various other siblings have been ruled out, so at present there are three of us on the list. NB I found out later that the Rhesus Negative/Positive bit is irrelevant to kidney transplants.
The next step is matching tissue types. This can be done at any hospital which would save me a 60 mile each way trip, so I'll see what happens after I have spoken to the transplant nurse on Monday
There is a lot about this process which I don't know, but I found the Kidney Research UK website to be very helpful.
Monday 26 March 2012
My Brother
My name is Matthew. For me, this journey started several years ago; my brother Tim mentioned casually that he had some problem with his kidneys and might need a transplant in the distant future if it continued to deteriorate. He is seven years younger than me and so was probably about 47 at the time, which seems a bit early in life to be having such problems. The thought then flitted across my mind that perhaps I should offer one of mine, but I heard no more about it and the problem seemed to have disappeared.
Then in February 2012 my mother asked if I had "heard about Tim". It transpired that his kidneys had indeed deteriorated and were now approaching the stage at which a transplant would be required. I called him and we chatted about his condition. He said something about waiting for a (dead) donor and I at once said that he could have one of mine. He laughed and said that I was about sixth on the list (we come from a large family). Some weeks later I received an e-mail sent by his wife to those of us who had made the offer. Basically the deterioration now was so much that the hospital had asked him to actively find a live donor, or rather two. The first question is blood group; Tim's is Type O and the hospital will take the first two volunteers who are compatible and see if either is a match in tissue type as well; if neither is, then they will work down the list!
Having once been in the armed forces I knew my blood group as it was embossed on my ID card. Personally I have that feeling in my bones that I will be the donor. You might know the feeling as well; it's a feeling of certainty which I have had just a few times in the past. Once was when I entered a competition (for me, a rare event) and was not at all surprised when I won; another time was when I wrote a letter to a national newspaper and just felt I knew that it would be published (it was).
Thus we got to a rather odd situation where five siblings had offered a kidney; we were asked to sort out between ourselves who would contact the hospital. At this stage in the proceedings only one of the others seems to know their blood group so we are waiting for some answers. In the meantime my own wife Jane has also volunteered as she also knows her blood group is compatible, being a long-time blood donor.
Then in February 2012 my mother asked if I had "heard about Tim". It transpired that his kidneys had indeed deteriorated and were now approaching the stage at which a transplant would be required. I called him and we chatted about his condition. He said something about waiting for a (dead) donor and I at once said that he could have one of mine. He laughed and said that I was about sixth on the list (we come from a large family). Some weeks later I received an e-mail sent by his wife to those of us who had made the offer. Basically the deterioration now was so much that the hospital had asked him to actively find a live donor, or rather two. The first question is blood group; Tim's is Type O and the hospital will take the first two volunteers who are compatible and see if either is a match in tissue type as well; if neither is, then they will work down the list!
Having once been in the armed forces I knew my blood group as it was embossed on my ID card. Personally I have that feeling in my bones that I will be the donor. You might know the feeling as well; it's a feeling of certainty which I have had just a few times in the past. Once was when I entered a competition (for me, a rare event) and was not at all surprised when I won; another time was when I wrote a letter to a national newspaper and just felt I knew that it would be published (it was).
Thus we got to a rather odd situation where five siblings had offered a kidney; we were asked to sort out between ourselves who would contact the hospital. At this stage in the proceedings only one of the others seems to know their blood group so we are waiting for some answers. In the meantime my own wife Jane has also volunteered as she also knows her blood group is compatible, being a long-time blood donor.
Subscribe to:
Posts (Atom)