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!
Showing posts with label HTA. Show all posts
Showing posts with label HTA. Show all posts
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!
Thursday 21 March 2013
More Positive Progress
I've now got the Human Tissue Authority interview booked for next Tuesday. I've not yet had the list of things to take but it includes a "long" birth certificate (which I can't find) and lots of photographs to prove that Tim and I have been part of the same large and loving family for years.
The "long" birth certificate is the one with your parents names on it, and I can only find the "short" one; this has been resolved by ordering a new one, which I shall pick up at the register office on my way to the interview. This involved a couple of funny phone calls as the local authority registration office is only about 250 yards from the house where I was born (and where my parents still live); hence when they said "where were you born?", my reply produced a friendly response along the lines of "I walk past there on my way to work"! At least it made the 7 day response become a bit quicker. Then on their form they ask for the reason why you want a birth certificate, and I suspect that my reason was unique for them, judging by their reaction.
I've also had some more test results, and a copy of the surgeon's letter to my consultant which sets out her reasons for judging me suitable to be a donor - I think I'll frame it!
The test results include a PSA check - dunno what that means but it was a blood test about my slightly enlarged prostate. This was the one from my ultrasound last year that was "probably normal for someone of your age"!! Anyway, the transplant nurse has told me that it is fine, and the surgeon's letter gave me the result of my exercise ECG last week, which was also fine, apparently. The important bit of that result is that there are "no ST changes" on the ECG; if you search for "ST depression" then you'll find what that means, and I think it's pretty important so that's VERY good.
So, essentially, apart from the result of my fasting lipid profile (i.e. blood test for cholesterol), I'm good to go. This is good, as my brother has seen his own consultant this morning and she is very pleased with the operation date; had one not been set he might have been looking at starting preparation for dialysis. I don't think he had actually realized how ill he is, and the setting of a date has been a bit of a shock to him. So, the waiting really is over, and it's time to sort out the details of how to prepare for the operation itself.
The "long" birth certificate is the one with your parents names on it, and I can only find the "short" one; this has been resolved by ordering a new one, which I shall pick up at the register office on my way to the interview. This involved a couple of funny phone calls as the local authority registration office is only about 250 yards from the house where I was born (and where my parents still live); hence when they said "where were you born?", my reply produced a friendly response along the lines of "I walk past there on my way to work"! At least it made the 7 day response become a bit quicker. Then on their form they ask for the reason why you want a birth certificate, and I suspect that my reason was unique for them, judging by their reaction.
I've also had some more test results, and a copy of the surgeon's letter to my consultant which sets out her reasons for judging me suitable to be a donor - I think I'll frame it!
The test results include a PSA check - dunno what that means but it was a blood test about my slightly enlarged prostate. This was the one from my ultrasound last year that was "probably normal for someone of your age"!! Anyway, the transplant nurse has told me that it is fine, and the surgeon's letter gave me the result of my exercise ECG last week, which was also fine, apparently. The important bit of that result is that there are "no ST changes" on the ECG; if you search for "ST depression" then you'll find what that means, and I think it's pretty important so that's VERY good.
So, essentially, apart from the result of my fasting lipid profile (i.e. blood test for cholesterol), I'm good to go. This is good, as my brother has seen his own consultant this morning and she is very pleased with the operation date; had one not been set he might have been looking at starting preparation for dialysis. I don't think he had actually realized how ill he is, and the setting of a date has been a bit of a shock to him. So, the waiting really is over, and it's time to sort out the details of how to prepare for the operation itself.
Sunday 24 February 2013
Outstanding Tests and Progress
I think this is all moving now. The Transplant Co-ordinator at Tim's hospital got on to me on Friday, just a day after his specialist appointment. They've had a look (a last!) at the results sent to them by my local transplant centre and need me to do a couple more tests and also see the consultant next Friday - that's a bit quick after six months of doing nothing. Then, if that's all OK, I'm booked to see the surgeon 13 days later. The HTA interview which I had been puzzled about (by its absence) will then happen after that.
The deal is that they are suggesting end May/early June for the operation, and we might also be on the cancellation list so it could be before then. As far as I can tell, from Tim's point of view this can't come soon enough.
One of the tests they want is an ECG treadmill test; presumably this is to make sure that I am fit enough (I think they are worried about my age) - I'd like to think that it wasn't done last year because they could see that I look damn fit, even though I say it myself. Still, it'll be good to actually meet these people at last!
The deal is that they are suggesting end May/early June for the operation, and we might also be on the cancellation list so it could be before then. As far as I can tell, from Tim's point of view this can't come soon enough.
One of the tests they want is an ECG treadmill test; presumably this is to make sure that I am fit enough (I think they are worried about my age) - I'd like to think that it wasn't done last year because they could see that I look damn fit, even though I say it myself. Still, it'll be good to actually meet these people at last!
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