That didn't last long. Today there was a team meeting where our case was discussed, and it was decided that the operation should be postponed until my brother has two consecutive eGFR tests of 15% or below. Which could even be a year, they say.
At least I can get on with my house (see http://houseintheenchantedforest.blogspot.co.uk/) but it really is quite irritating when you are getting yourself all psyched up for it. And it's not as though Tim feels perfectly well, he's quite ill but he's just not bad enough!
Just to rub it in, 30 minutes after that phone call, the postman brought the admission letter for April 30th.
Friday 22 March 2013
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.
Friday 15 March 2013
The Date is Set
Tim and I saw the surgeon yesterday, and we have set a date! May 1st!!! That's not long, is it? End May/early June had been mentioned but, as we have a family celebration on June 8th, we had intended to defer it to June 12th. Early May is fine as we'll have plenty of time to recover before the celebration, and now it won't be a spectre hanging over the event.
Going back to the start of yesterday, I left here really early to drive to London and miss the worst of the traffic on the M25. My first appointment was a treadmill test in the ECG Dept at 9.00am. This was quite easy; the actual test takes only nine minutes, and it was only the last three minutes which were remotely trying. For that part the thing is going at 3.4 miles per hour and it is tilted up at some angle, which puts a good stress on your shins. To me this was actually the same feeling as doing a forced march on my RAF training many years ago which I think was about 4.5 mph (and don't forget the 30kg backpack and rifle). The technician took regular blood pressure measurements, and I was pleased to see how low mine was - starting at 118/78 isn't bad, I think, and the highest it got to was (I think) 150/70. The machine showed the systolic figure as a percentage of 159 which I was told was the highest allowable figure for a person of my height/weight/age. Anyway, the technician wrote a few lines about the test, ending with "Good Effort", so I think I passed that.
Then at 12.00 the Renal Dept staff were surprised to see me when I arrived with Tim!? It turned out that there had been some horrible accident which had blocked the A3 and they had expected that I (like some other distant patients) would be severely delayed by that. While we were waiting there was lots of time to provide another urine sample which seems par for the course.
I was seen first and had a lively chat with the surgeon, Sarah. She is a lovely person who inspires confidence and knows how to treat you as an individual. Her questions to me were full of good explanations which allowed for the fact that I am fairly intelligent and have done some research on-line. She ascertained early on that I'm a Chartered Engineer, and she has a husband and brother who are both engineers, and so she started using engineering terms. She even described herself as "just a plumber"!! She then produced a schematic of the relevant bit of "plumbing" and asked me whch kidney should be removed? I said that I think the standard answer is the left, other things being equal. It turns out that other things aren't equal as my right kidney has lots more plumbing than my left, so she will definitely take the left as that makes it much easier (=safer) to both remove and install. My right kidney has three arteries in and two out, but my left one has just one of each, so is perfect. The other issue is the size and the right is just a bit bigger, and they prefer to leave the donor with the larger one if possible, so that was all the ticks in the same box. It was good to actually see the pictures from last year's CT scan (see this entry last August). These showed clearly the difference in the arteries of the two kidneys - isn't the technology incredible?
Sarah was most impressed with the quality of our tissue type match - I think her word was "amazing". She wants me to do a fasting blood test at my GP (again? I think someone lost the original from last year) but otherwise I'm good to go. I was with her for almost an hour, and then it was Tim's turn for about 45 minutes, then we were in together and the main question was the date, followed by a few practical details. There still remains the HTA interview and "our case" will get discussed by her team at some weekly meeting soon, and I think that there will be another visit for me there somewhen in April (possibly the week before admission?). One of the practical details is that we are admitted on the morning of Tuesday 30th April and they seem to spend that day doing lots of checks (and doubtless taking more blood and urine samples!)
Of course, before we left, there some more blood samples to be provided - they never seem to have enough of those, but at least I haven't got the same bruised arm as last time...
Going back to the start of yesterday, I left here really early to drive to London and miss the worst of the traffic on the M25. My first appointment was a treadmill test in the ECG Dept at 9.00am. This was quite easy; the actual test takes only nine minutes, and it was only the last three minutes which were remotely trying. For that part the thing is going at 3.4 miles per hour and it is tilted up at some angle, which puts a good stress on your shins. To me this was actually the same feeling as doing a forced march on my RAF training many years ago which I think was about 4.5 mph (and don't forget the 30kg backpack and rifle). The technician took regular blood pressure measurements, and I was pleased to see how low mine was - starting at 118/78 isn't bad, I think, and the highest it got to was (I think) 150/70. The machine showed the systolic figure as a percentage of 159 which I was told was the highest allowable figure for a person of my height/weight/age. Anyway, the technician wrote a few lines about the test, ending with "Good Effort", so I think I passed that.
Then at 12.00 the Renal Dept staff were surprised to see me when I arrived with Tim!? It turned out that there had been some horrible accident which had blocked the A3 and they had expected that I (like some other distant patients) would be severely delayed by that. While we were waiting there was lots of time to provide another urine sample which seems par for the course.
I was seen first and had a lively chat with the surgeon, Sarah. She is a lovely person who inspires confidence and knows how to treat you as an individual. Her questions to me were full of good explanations which allowed for the fact that I am fairly intelligent and have done some research on-line. She ascertained early on that I'm a Chartered Engineer, and she has a husband and brother who are both engineers, and so she started using engineering terms. She even described herself as "just a plumber"!! She then produced a schematic of the relevant bit of "plumbing" and asked me whch kidney should be removed? I said that I think the standard answer is the left, other things being equal. It turns out that other things aren't equal as my right kidney has lots more plumbing than my left, so she will definitely take the left as that makes it much easier (=safer) to both remove and install. My right kidney has three arteries in and two out, but my left one has just one of each, so is perfect. The other issue is the size and the right is just a bit bigger, and they prefer to leave the donor with the larger one if possible, so that was all the ticks in the same box. It was good to actually see the pictures from last year's CT scan (see this entry last August). These showed clearly the difference in the arteries of the two kidneys - isn't the technology incredible?
Sarah was most impressed with the quality of our tissue type match - I think her word was "amazing". She wants me to do a fasting blood test at my GP (again? I think someone lost the original from last year) but otherwise I'm good to go. I was with her for almost an hour, and then it was Tim's turn for about 45 minutes, then we were in together and the main question was the date, followed by a few practical details. There still remains the HTA interview and "our case" will get discussed by her team at some weekly meeting soon, and I think that there will be another visit for me there somewhen in April (possibly the week before admission?). One of the practical details is that we are admitted on the morning of Tuesday 30th April and they seem to spend that day doing lots of checks (and doubtless taking more blood and urine samples!)
Of course, before we left, there some more blood samples to be provided - they never seem to have enough of those, but at least I haven't got the same bruised arm as last time...
Saturday 2 March 2013
Progress At Last
Yesterday I finally had my first appointments at the hospital where my brother has been treated. This is near to my parents' house and so we had plans to go and see them for lunch and dinner before returning home; it all made for a long day.
Being nice, I will only say that at this hospital, the general approach to patients is not quite as good as my local transplant centre, but perhaps I've just been lucky. We arrived early, not wanting to risk the London traffic, and found our way around this slightly out off date building to the Renal Dept. Eventually I met one of the transplant nurses (although the one looking after me was on holiday) and asked for the obligatory blood and urine samples; I was much amused by the phlebotomist's tourniquet having Dracula and vampires on it! Then I was off for an echocardiogram at the ECG Dept which is where I shall also have the treadmill test in a couple of weeks (the day when I see the surgeon); I was told yesterday that actually I couldn't have that test on that day - it was a mistake. Happily whilst I was being seen, my wife spoke with them and I now have a 9.00am appointment for that same day (as I really wouldn't want to travel all that way for such a frankly trivial test).
The actual echocardiogram was fine, it seems, but I found the posture adopted was a bit difficult. I was asked to lie on my left side with the display behind me (are they still afraid of the patient seeing his own data on the screen?). The table was canted up as well so I was bent sideways at my waist, and then I was asked to bring my left arm up over my head! Try doing this at home, add in a sometimes bad back and neck, and see if you could hold this for 25 minutes! A large pillow to support my head would have been a good start, and if they wanted my left arm out of the way, I would have preferred to put it on the end of the table. I actually used it to support my head, but then my elbow started complaining... This procedure did not finish until at least 20 minutes after my consultant appointment, so there was another long walk back to Renal and another wait, before seeing the consultant almost an hour late.
On the phone, the transplant nurse had said that the consultant was "my" consultant, and his job was to protect my interests. I had not quite appreciated this aspect before; he is required to be (and is) totally independent of the team looking after my brother, to ensure that there is no conflict of interest. He went through a lot of my history using his PC but, to my surprise, there was no data on it from the tests last year. It seems that the CD with all that information is still with the absent transplant nurse - I know it was sent because I posted it myself last August, and she had confirmed that she has it.
[Slight drift off topic - I used to work in IT, and I have always thought that the story of the NHS IT system under the last Labour Govt was scandalous. They wasted well over £10 billion on this project and kept on giving more cash to the useless people (principally Accenture, formerly Andersen Consulting) who kept on getting it wrong. Eventually it was gently terminated by the new government in 2011. The first aim of such a national project should not be to try to design and implement one new system for the whole country, but to make it possible to link the existing systems together so that data can be passed to another hospital, as in this case. To do this you have to define a common standard for the data and define the export file that you need to send; then the only expensive bit of new software is a process to import the datafile into each individual system. This they clearly failed to achieve if they cannot import data from a CD from a different hospital trust; can I please have £1m for showing them the way?]
Back to the topic: after lots of warnings about the risks, my consultant declared himself happy that I was fit to donate, and then thanked me for doing so. He followed that up by saying that of course I can still change my mind right up to the actual removal of my kidney - there has to be a point of no return somewhere, after all.
We left this old hospital with its difficult signage, dated and tired decoration, multiple levels and silly (and expensive) car park, and spoke of the hospitals back home. In several different departments of three separate hospitals in the same group near where we live, I have had such consistently wonderful service from helpful and lovely people in the last year. What is it that makes hospitals so different? When you go somewhere else, the different culture is most noticeable, and it really affects the patient's experience. The actual operation will be done at another larger and more well known hospital so we're not too worried about this; however I couldn't help wondering whether Gordon Brown would have been better off investing all that cash in better facilities rather than believing those *** IT consultants!
Being nice, I will only say that at this hospital, the general approach to patients is not quite as good as my local transplant centre, but perhaps I've just been lucky. We arrived early, not wanting to risk the London traffic, and found our way around this slightly out off date building to the Renal Dept. Eventually I met one of the transplant nurses (although the one looking after me was on holiday) and asked for the obligatory blood and urine samples; I was much amused by the phlebotomist's tourniquet having Dracula and vampires on it! Then I was off for an echocardiogram at the ECG Dept which is where I shall also have the treadmill test in a couple of weeks (the day when I see the surgeon); I was told yesterday that actually I couldn't have that test on that day - it was a mistake. Happily whilst I was being seen, my wife spoke with them and I now have a 9.00am appointment for that same day (as I really wouldn't want to travel all that way for such a frankly trivial test).
The actual echocardiogram was fine, it seems, but I found the posture adopted was a bit difficult. I was asked to lie on my left side with the display behind me (are they still afraid of the patient seeing his own data on the screen?). The table was canted up as well so I was bent sideways at my waist, and then I was asked to bring my left arm up over my head! Try doing this at home, add in a sometimes bad back and neck, and see if you could hold this for 25 minutes! A large pillow to support my head would have been a good start, and if they wanted my left arm out of the way, I would have preferred to put it on the end of the table. I actually used it to support my head, but then my elbow started complaining... This procedure did not finish until at least 20 minutes after my consultant appointment, so there was another long walk back to Renal and another wait, before seeing the consultant almost an hour late.
On the phone, the transplant nurse had said that the consultant was "my" consultant, and his job was to protect my interests. I had not quite appreciated this aspect before; he is required to be (and is) totally independent of the team looking after my brother, to ensure that there is no conflict of interest. He went through a lot of my history using his PC but, to my surprise, there was no data on it from the tests last year. It seems that the CD with all that information is still with the absent transplant nurse - I know it was sent because I posted it myself last August, and she had confirmed that she has it.
[Slight drift off topic - I used to work in IT, and I have always thought that the story of the NHS IT system under the last Labour Govt was scandalous. They wasted well over £10 billion on this project and kept on giving more cash to the useless people (principally Accenture, formerly Andersen Consulting) who kept on getting it wrong. Eventually it was gently terminated by the new government in 2011. The first aim of such a national project should not be to try to design and implement one new system for the whole country, but to make it possible to link the existing systems together so that data can be passed to another hospital, as in this case. To do this you have to define a common standard for the data and define the export file that you need to send; then the only expensive bit of new software is a process to import the datafile into each individual system. This they clearly failed to achieve if they cannot import data from a CD from a different hospital trust; can I please have £1m for showing them the way?]
Back to the topic: after lots of warnings about the risks, my consultant declared himself happy that I was fit to donate, and then thanked me for doing so. He followed that up by saying that of course I can still change my mind right up to the actual removal of my kidney - there has to be a point of no return somewhere, after all.
We left this old hospital with its difficult signage, dated and tired decoration, multiple levels and silly (and expensive) car park, and spoke of the hospitals back home. In several different departments of three separate hospitals in the same group near where we live, I have had such consistently wonderful service from helpful and lovely people in the last year. What is it that makes hospitals so different? When you go somewhere else, the different culture is most noticeable, and it really affects the patient's experience. The actual operation will be done at another larger and more well known hospital so we're not too worried about this; however I couldn't help wondering whether Gordon Brown would have been better off investing all that cash in better facilities rather than believing those *** IT consultants!
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