Getting really close now - less than three weeks. Yesterday was the HTA (Human Tissue Authority) interview. They have a legal duty to be satisfied that I am under no duress or coercion, and not being rewarded in any way for donating. As part of this, you have to prove your relationship to the recipient, which we did with full birth certificates (NB not the abbreviated one as you need parents' names on it) and lots of old wedding photos for ourselves and some of our siblings. We have often had a photo taken at these events showing the seven brothers in order, with the new bride in the middle - never thought these would come in handy! The only worry I had was that I don't look as young as I was, so I also took an old passport to prove that it was me in the pictures.
The HTA also want to be assured that the donor understands the risks of donation and the possible things that could go wrong, so a decent read of the four page HTA document is required, as well as listening carefully to the things that the surgeon said in our earlier interview. It all went well and the interviewer said that she was satisfied, so that's a done deal unless there was something fundamental that she forgot to ask. I also had a few pre-op things done - some MRSA swabs, some more bloods (as always!) and a fasting abdominal ultrasound, which was done by a doctor and he pronounced that there were no issues seen. NB I don't know why this was needed - did they think my insides might have changed since the last one in August last year?
The next step is the final cross-match check which will be done six days before the op - another visit to London - and then everything else will be done the day before the op.
Starting to feel a bit nervous or apprehensive - the same sort of feeling as the imminent arrival of a long-awaited exam day. As I've said before, this is all the sort of thing that I had expected as a natural consequence of making the donation decision last year, so it's no surprise really, just a realization that the summit seen from afar is actually getting quite near!
Wednesday 25 September 2013
Thursday 5 September 2013
Less Than Six Weeks Now
It's funny how things change. Last year, I was expecting to have the operation quite quickly and time seemed to pass quite slowly as eventually it dawned on me that actually it wasn't going to be that quick. Then we had the false start back in March when we agreed a date in May only to be over-ruled by the team meeting. Now it seems an age ago (i.e. early July) that we agreed the operation date (Oct 16th) but suddenly I realise that it is just six weeks away. That's the sort of thought that makes your stomach flip a bit as you appreciate that it really is going to happen. Soon. Voluntarily.
Back in June I made an analogy of this experience to a parachute jump which I did 20 years ago (see this entry). As time passes I am even more convinced that it is a very good analogy for kidney donation. I volunteered for that jump, and it never crossed my mind, once that decision was made, to opt out. The following through with actions was a natural consequence of the decision; I didn't keep asking myself "why am I doing this?", I just got on and focussed on what needed to be done, the next task.
I think that is exactly how I feel now. Right down to the idea of going into a hospital as a very well person and coming out as a not so well person who needs time and attention to recover. The decision is made; my brother needs some help which I can provide. I just focussed on the next test, the next visit, and kept on doing it. At every test I was surprised that I kept on passing them! How would I feel later in life if either I had not volunteered, or else I had got cold feet and opted out after a few tests?
I am not really surprised to be a form of answer to prayer. It was said a long time ago that you shouldn't pray for something unless you were prepared to be part of the answer! I really feel that I was called to volunteer, that this task "had my name on it", and that this is one of the things that my life is all about.
Anyway, it's the HTA interview in less than three weeks, plus another abdominal ultrasound for good measure. I really found the last one a bit odd - two young women (one was a trainee) staring intently at my abdomen and the picture that appeared on the screen. My age is more than the two of them together. That really makes me feel old - they probably think of me as almost geriatric!
Back in June I made an analogy of this experience to a parachute jump which I did 20 years ago (see this entry). As time passes I am even more convinced that it is a very good analogy for kidney donation. I volunteered for that jump, and it never crossed my mind, once that decision was made, to opt out. The following through with actions was a natural consequence of the decision; I didn't keep asking myself "why am I doing this?", I just got on and focussed on what needed to be done, the next task.
I think that is exactly how I feel now. Right down to the idea of going into a hospital as a very well person and coming out as a not so well person who needs time and attention to recover. The decision is made; my brother needs some help which I can provide. I just focussed on the next test, the next visit, and kept on doing it. At every test I was surprised that I kept on passing them! How would I feel later in life if either I had not volunteered, or else I had got cold feet and opted out after a few tests?
I am not really surprised to be a form of answer to prayer. It was said a long time ago that you shouldn't pray for something unless you were prepared to be part of the answer! I really feel that I was called to volunteer, that this task "had my name on it", and that this is one of the things that my life is all about.
Anyway, it's the HTA interview in less than three weeks, plus another abdominal ultrasound for good measure. I really found the last one a bit odd - two young women (one was a trainee) staring intently at my abdomen and the picture that appeared on the screen. My age is more than the two of them together. That really makes me feel old - they probably think of me as almost geriatric!
Friday 9 August 2013
Cholesterol Postscript
There was one rather nice thing recently - I was told the results of my blood test early in July. The result was VERY good - my cholesterol has gone down from 6.8 in March, to 4.7 which is on the right side of 5! Now, considering that I have given up just a few things and taken only a little bit more care with what I cook and eat, I think that's a remarkable result. I have to thank my other half for that, really, as she is the one who knows how much saturated fat there is in everything.
I've not taken any more of that Atorvastatin stuff (which caused me sleeplessness) and so I feel quite justified in that decision.
Meanwhile, the HTA interview is now fixed for September. That was more difficult than it sounds, as the interviewer only gave the hospital one date and time rather than a choice, which is normal. Since I have to travel from the wilds of Oxfordshire to a London suburb, a 9.00am start was not really on and, in any case, I had asked for a time of 12.00 or later to allow for me to travel by train at the cheaper rate (and I'm paying!!). So the transplant nurse requested some alternatives for me and the reply was 11.00am on the same day! So we went round the houses again, and at last had a choice of three dates and times.
I'm now expecting the letter with all the details of that; I think I have to demonstrate something about my close ties with my brother, like a family photo album. Now given that I have lots of brothers and there are four who are closer to me in age than Tim (who is seven years younger than me), it is hardly surprising that there are relatively few photos that show us together. I just hope that the interviewer is more understanding at the job than in arranging appointments. After all, if you were told to find the two related people in a crowd of a hundred, you would pick the two of us out without difficulty!
I've not taken any more of that Atorvastatin stuff (which caused me sleeplessness) and so I feel quite justified in that decision.
Meanwhile, the HTA interview is now fixed for September. That was more difficult than it sounds, as the interviewer only gave the hospital one date and time rather than a choice, which is normal. Since I have to travel from the wilds of Oxfordshire to a London suburb, a 9.00am start was not really on and, in any case, I had asked for a time of 12.00 or later to allow for me to travel by train at the cheaper rate (and I'm paying!!). So the transplant nurse requested some alternatives for me and the reply was 11.00am on the same day! So we went round the houses again, and at last had a choice of three dates and times.
I'm now expecting the letter with all the details of that; I think I have to demonstrate something about my close ties with my brother, like a family photo album. Now given that I have lots of brothers and there are four who are closer to me in age than Tim (who is seven years younger than me), it is hardly surprising that there are relatively few photos that show us together. I just hope that the interviewer is more understanding at the job than in arranging appointments. After all, if you were told to find the two related people in a crowd of a hundred, you would pick the two of us out without difficulty!
Saturday 13 July 2013
The Date is Set - Again
Positive progress at last. Tim and I met the surgeon again a week ago, and confirmed that we were still fit and healthy. Then yesterday the transplant nurse confirmed that a date has been set (again - see last time) for the operations, namely October 16th. This is the date we agreed tentatively at our meeting, but this time (unlike last time - see here) they waited until the team meeting every Friday had confirmed the decision before telling us it was set. We did have options to ask for a September date but this is out due to family events like a wedding.
Since Tim's eGFR is still just above 15%, what has changed? I think basically they have accepted Tim's evidence of being less physically fit this year than the same time last year, and therefore on the basis of his reduced quality of life, they have accepted that the operation should go ahead. I suppose that eGFR is not the only symptom but is used as a convenient measure which covers most cases, but not this one!
Now, I still need to have the HTA interview, and this will be booked for September. I also need to have another ultrasound - I think they like to have this one really up to date and my previous one was in August last year, so will be 14 months old. Hopefully this will be fixed for the same date to save me too much travelling. Then we're ready to roll!
Since Tim's eGFR is still just above 15%, what has changed? I think basically they have accepted Tim's evidence of being less physically fit this year than the same time last year, and therefore on the basis of his reduced quality of life, they have accepted that the operation should go ahead. I suppose that eGFR is not the only symptom but is used as a convenient measure which covers most cases, but not this one!
Now, I still need to have the HTA interview, and this will be booked for September. I also need to have another ultrasound - I think they like to have this one really up to date and my previous one was in August last year, so will be 14 months old. Hopefully this will be fixed for the same date to save me too much travelling. Then we're ready to roll!
Tuesday 25 June 2013
More on Cholesterol
I mentioned my cholesterol blood test a while back (see this entry) and I realize that I never updated on what happened next: the surgery rang me and said that the GP wanted to see me about it! This was despite having been told by them that I was NORMAL and they had confirmed no further action was required. So I asked the obvious questions "Has he seen the test result? Is this really necessary?" which was all too much for them. Clearly they are not accustomed to people asking questions, but after two such phone calls I gave in and made an appointment with the GP.
He got off to a bad start by saying "we've had this letter from a hospital in London which asks us..." at which I said "yes, I know, I myself gave that to the nurse when I had the blood test". (In fact I virtually had to force it on her.) Anyway, it turns out that my overall cholesterol level had fallen and was indeed now acceptable, but the low density cholesterol (the worst sort) was 3.5 and the letter said "If LDL > 3 ..." So we had a long chat about this - he was pretty unhappy about being asked to do something by someone else - and I agreed to take the Atorvastatin stuff for three months and then do another fasting blood test to see if it did any good.
Well, I've only finished the first month of the prescription for Atorvastatin and I'm not taking any more until I've seen the GP again. The leaflet says that one of the possible side effects is sleeplessness; I suffered several dreadful nights whilst taking it, so I've stopped and - hey! I've been sleeping pretty well!
He got off to a bad start by saying "we've had this letter from a hospital in London which asks us..." at which I said "yes, I know, I myself gave that to the nurse when I had the blood test". (In fact I virtually had to force it on her.) Anyway, it turns out that my overall cholesterol level had fallen and was indeed now acceptable, but the low density cholesterol (the worst sort) was 3.5 and the letter said "If LDL > 3 ..." So we had a long chat about this - he was pretty unhappy about being asked to do something by someone else - and I agreed to take the Atorvastatin stuff for three months and then do another fasting blood test to see if it did any good.
Well, I've only finished the first month of the prescription for Atorvastatin and I'm not taking any more until I've seen the GP again. The leaflet says that one of the possible side effects is sleeplessness; I suffered several dreadful nights whilst taking it, so I've stopped and - hey! I've been sleeping pretty well!
Monday 17 June 2013
Possible Progress
My brother reported to me recently that he had taken a few days off and visited the same place as last year at the same time. So he did the same walks along cliffs and beaches as last year. And he found that he was far less fit than last year and couldn't do these same activities as easily (or at all). But according to the hospital, his kidney function is still as good now as it was last year.
Now the kidney disease is the only thing wrong with him, so what's going on here? Why is he feeling worse when they say his condition has not changed? They haven't given him an answer, but there is now a suggestion from his consultant that as his quality of life is reducing, perhaps he should be given the choice of electing to have the transplant sooner rather than later. His eGFR is still hovering at or above the level where they would recommend the transplant but it seems that, in his case, they will accept the evidence of the reduced "quality of life" and ignore the eGFR figure. So, we could be back at the starting gate, looking at a possible operation in about October this year, by the sounds of it. I'm trying not to get worked up over this - they have changed their mind before so, until their team meeting agrees, I won't make any plans.
I once did a parachute jump. After training, I actually found it quite easy to get in the aircraft and we taxied out; I was committed and accepted the imminent event calmly. The decision had already been made and I wasn't reconsidering at that stage, just like now. Then at 2,000ft I waited my turn, and then did all the right things when the jump master shouted at me. I think that was the military part of me, responding to training and not looking down as I stood at the exit from the aircraft. In the same way, when I had my colonoscopy (see this entry), I just accepted the treatment and didn't worry at all about what these professionals were going to do to me, or the possible outcomes.
In any case, I think my approach is to take it as a decision made and look only at the practical issues. Perhaps I should think of it as though I was the one who was ill? In that case I accept that it has to happen somewhen; then my military training clicks in, I ignore the personal thoughts and just do what is needed.
Now the kidney disease is the only thing wrong with him, so what's going on here? Why is he feeling worse when they say his condition has not changed? They haven't given him an answer, but there is now a suggestion from his consultant that as his quality of life is reducing, perhaps he should be given the choice of electing to have the transplant sooner rather than later. His eGFR is still hovering at or above the level where they would recommend the transplant but it seems that, in his case, they will accept the evidence of the reduced "quality of life" and ignore the eGFR figure. So, we could be back at the starting gate, looking at a possible operation in about October this year, by the sounds of it. I'm trying not to get worked up over this - they have changed their mind before so, until their team meeting agrees, I won't make any plans.
I once did a parachute jump. After training, I actually found it quite easy to get in the aircraft and we taxied out; I was committed and accepted the imminent event calmly. The decision had already been made and I wasn't reconsidering at that stage, just like now. Then at 2,000ft I waited my turn, and then did all the right things when the jump master shouted at me. I think that was the military part of me, responding to training and not looking down as I stood at the exit from the aircraft. In the same way, when I had my colonoscopy (see this entry), I just accepted the treatment and didn't worry at all about what these professionals were going to do to me, or the possible outcomes.
In any case, I think my approach is to take it as a decision made and look only at the practical issues. Perhaps I should think of it as though I was the one who was ill? In that case I accept that it has to happen somewhen; then my military training clicks in, I ignore the personal thoughts and just do what is needed.
Friday 5 April 2013
Another Little Detail I had Forgotten!
I had forgotten to record that, when we met the surgeon at the hospital, she also asked for a fasting blood test to check my cholesterol level. I arranged this at my local surgery and it was done quite quickly (and without bruising). My blood pressure was taken at the same time and was 113/72 (or something like that) which is the lowest I have ever seen it. I then left the surgery and popped into the adjacent coffee shop for a large latte and a lovely bit of cake, having had no breakfast. I then entirely forgot about the test and it was only over the Easter weekend that I remembered that I had not had the results.
Now, a previous GP explained the cholesterol graphs to me about nine years ago. My understanding then was that it is almost impossible at my weight and age to be in the "Normal" part of the graphs. Hence it was no real deal to be told that I was in the "Caution" sector at that time - I was just happy that I wasn't in "Danger"!
Consequently it was with some trepidation that I rang the surgery last Tuesday to ask for the result. I was amazed to be told that the test was "Normal", and no further action is required. Perhaps they really mean "Normal for your age and weight"? It is not the first time I have had that said to me - see this blog about my ultrasound last July. That's a bit more believable but it is still far better than what I was expecting. So, I really am FIT.
Now, a previous GP explained the cholesterol graphs to me about nine years ago. My understanding then was that it is almost impossible at my weight and age to be in the "Normal" part of the graphs. Hence it was no real deal to be told that I was in the "Caution" sector at that time - I was just happy that I wasn't in "Danger"!
Consequently it was with some trepidation that I rang the surgery last Tuesday to ask for the result. I was amazed to be told that the test was "Normal", and no further action is required. Perhaps they really mean "Normal for your age and weight"? It is not the first time I have had that said to me - see this blog about my ultrasound last July. That's a bit more believable but it is still far better than what I was expecting. So, I really am FIT.
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