I'm very pleased to say that I have just received notification of three appointments for 10th August - that's going to be another busy day! These appointments are for a CT angiogram, a Glomerular Filtration Rate (GFR) test and a Renal DMSA.
The fact that I have progressed to this stage means that the tests two weeks ago were all fine - there would be no point in having an expensive CT scan if they weren't. The other two appointments are to done in the "Nuclear Medicine Department" which sounds a bit worrying but isn't, apart from the fact that it isn't shown on the hospital map! The "Nuclear" bit is because for each of these they inject you with a small amount of radioactive fluid.
I don't yet know what DMSA stands for, but the test "demonstates the location and function of my kidneys". At least I know now that the GFR test will provide a real GFR figure, not an estimate, which is what eGFR means as the "e" in "eGFR" is for "estimated". The
neph at my tests explained why that is; the more extensive multiple blood sample
test will give a truer figure than the single blood sample which was done then. In this test they take blood samples at intervals after the injection in order to monitor how well your kidneys are dealing with it. So this test lasts for up to five hours! Since the Renal DMSA also requires a 1.5 hour wait for another blood test after the injection, it's going to be a long day; this time I will definitely be able to read more of my book, which I didn't last time as they were so quick.
Going back to the last set of tests, I had a strange feeling being tested by some specialist for something
that I know very little about. I just feel so detached from the
process and watch with an interest which hardly accepts that I am
actually the subject of their investigations. I noticed this earlier this year during my colonoscopy
(see this previous entry)
- it was really strange being able to see the inside of my own lower
intestine on a TV screen! I rather think that the hospital specialists
think that I am a bit odd - perhaps I am - as I meekly accept my fate at
their hands and do precisely whatever they ask me to, without argument
or apparent concern. However, I don't think that this will apply much at the next tests as the last two will simply be injections and blood samples, with a lot of waiting.
Finally, here's a link to a very useful website all about kidney donation, which has lots of information, stories of experiences, blogs and links. I have found that most of this sort of thing on-line is from the USA, but this one is British which is useful as the health systems are pretty different; it started with the story of Dianne Franks who in 2010 made a non-directed living kidney donations in the UK not long after that was legalised. [Edit: in fact, Di's comprehensive website gives an explanation of DMSA (above), so I'll cover that next time.]
Friday 13 July 2012
Tuesday 3 July 2012
Major Testing At Last
Well, I've just been at my local transplant centre for a large programme of testing. I had expected this would take all day and am somewhat surprised to have only spent 2.5 hours in the hospital this morning! So here I am back at home eating my packed lunch, having only read five pages of "Pilgrim's Progress" this morning. [I was advised ALWAYS to take plenty of reading material for such a wide-ranging set of appointments.]
The following tests were done: an ultrasound of my abdomen, a chest X-Ray (i.e. heart and lungs), a collection of blood samples, a urine sample and an electro-cardiogram (ECG). There was also my first interview with a nephrologist ("neph"), who also did various checks again such as height, weight, blood pressure and a fair bit of trying to tickle me with his stethoscope.
The day started well at radiology, apart from the liquid. One is instructed to consume TWO pints of anything non-fizzy (I guessed that ruled out my favourite ale even though it isn't really fizzy), just one hour before the appointment. I was early and the wait was getting risky, and then to my surprise I was called for my chest X-ray. How good that someone is switched on enough to know that she can take me and do a one minute test, thus getting me out of the way before her day gets busier. At 8.10am the waiting room had only the person before me who went in at 8.20; I was seen promptly at 8.40am for the ultrasound by two young and attractive radiologists (one was a trainee) - I realized afterwards that I was probably older than their combined ages!! Part of the test requires a full bladder and then you can (at last) relieve yourself and they do the test again. It's noticeable that part of the design of a hospital requires the Ultrasound room to be situated immediately adjacent to some toilets. Then I had to go back to the loo and do it again... When they finished one said that I have an enlarged prostate and added "nothing to worry about - that's normal as you get older!". When I came out after 30 minutes, the waiting room had about ten people in it; I felt slightly guilty at keeping them waiting because I had spent 10 minutes in the loo!
Then it was over to the Transplant Centre. They seemed to have a new system and new staff at reception, but I found that it helps if you can tell them what you need, as the odds are that will speed things up. As I have remarked before, you seem to get treated very well as a potential living donor (PLD). I actually felt quite guilty (again) at taking a seat in a crowded waiting room and then being called only one minute later by the Transplant Nurse for a general check on what we were doing today.
Then after a whole five minutes waiting, I had a lovely chat with the neph. One thing that he is checking is whether I am fully informed about this decision (and of sound mind) so it seemed right to show that I had done some research about the risks and so on. At least nowadays doctors accept that patients may very well have done some on-line research for themselves; information is power and once they used to resent any such input from the patient. He also went through my medical history and I was reassured that there was nothing in it which would appear to impact this process. I did volunteer the view that I think my medical problems in the future will be related to joints and ligaments etc which are more structural than anything related to systems, and therefore unrelated to donating a kidney.
Then after a brief stay in the waiting area, I was called for about five blood samples to be taken. The most important of these will be the one which allows assessment of my kidney function, either as eGFR or a creatinine measure. After a quick urine sample (still easy after the two pints) and an even briefer stay in the waiting area it was time for an ECG - this confused reception as they were going to send me back to Radiology for it, but the Transplant Nurse was going to do it herself. I know from many annual pilot medicals that I have a "right bundle branch block", but the ECG machine didn't do any auto analysis and neither nurse could interpret it to confirm that. I once annoyed a radiologist in Guys by predicting the result; despite being young, she was of the old school where patients weren't allowed to access that sort of information about themselves!
Then that was it. I was allowed to go and was on the bus back to the Park and Ride within three hours of ariving at the hospital. Everything looks fine at the moment, so I have to await a review of the test results by the senior "neph", and then I will get an appointment for a CT scan.
Assuming that the scan is OK, my transplant centre will then pass me on to the team at my brother's hospital in London where the surgery will actually take place (if it all goes to plan). Of course, if there's a problem then it's the end of the line as far as my involvement is concerned. At least there is already another perfect match donor available for Tim. At his recent routine appointment they expressed surprise that there were TWO perfect tissue type matches from siblings as they would normally only hope for such a good match from an identical twin (and not neccessarily even then). Mind you, a perfect match is far less significant than it used to be; I think it just reduces the cocktail of drugs that the recipient has to take and possibly also improves the probability of everything being fine; this seems a good thing, even if it's only a 1% improvement in the already high probability of a living donor's kidney still working well years later.
The following tests were done: an ultrasound of my abdomen, a chest X-Ray (i.e. heart and lungs), a collection of blood samples, a urine sample and an electro-cardiogram (ECG). There was also my first interview with a nephrologist ("neph"), who also did various checks again such as height, weight, blood pressure and a fair bit of trying to tickle me with his stethoscope.
The day started well at radiology, apart from the liquid. One is instructed to consume TWO pints of anything non-fizzy (I guessed that ruled out my favourite ale even though it isn't really fizzy), just one hour before the appointment. I was early and the wait was getting risky, and then to my surprise I was called for my chest X-ray. How good that someone is switched on enough to know that she can take me and do a one minute test, thus getting me out of the way before her day gets busier. At 8.10am the waiting room had only the person before me who went in at 8.20; I was seen promptly at 8.40am for the ultrasound by two young and attractive radiologists (one was a trainee) - I realized afterwards that I was probably older than their combined ages!! Part of the test requires a full bladder and then you can (at last) relieve yourself and they do the test again. It's noticeable that part of the design of a hospital requires the Ultrasound room to be situated immediately adjacent to some toilets. Then I had to go back to the loo and do it again... When they finished one said that I have an enlarged prostate and added "nothing to worry about - that's normal as you get older!". When I came out after 30 minutes, the waiting room had about ten people in it; I felt slightly guilty at keeping them waiting because I had spent 10 minutes in the loo!
Then it was over to the Transplant Centre. They seemed to have a new system and new staff at reception, but I found that it helps if you can tell them what you need, as the odds are that will speed things up. As I have remarked before, you seem to get treated very well as a potential living donor (PLD). I actually felt quite guilty (again) at taking a seat in a crowded waiting room and then being called only one minute later by the Transplant Nurse for a general check on what we were doing today.
Then after a whole five minutes waiting, I had a lovely chat with the neph. One thing that he is checking is whether I am fully informed about this decision (and of sound mind) so it seemed right to show that I had done some research about the risks and so on. At least nowadays doctors accept that patients may very well have done some on-line research for themselves; information is power and once they used to resent any such input from the patient. He also went through my medical history and I was reassured that there was nothing in it which would appear to impact this process. I did volunteer the view that I think my medical problems in the future will be related to joints and ligaments etc which are more structural than anything related to systems, and therefore unrelated to donating a kidney.
Then after a brief stay in the waiting area, I was called for about five blood samples to be taken. The most important of these will be the one which allows assessment of my kidney function, either as eGFR or a creatinine measure. After a quick urine sample (still easy after the two pints) and an even briefer stay in the waiting area it was time for an ECG - this confused reception as they were going to send me back to Radiology for it, but the Transplant Nurse was going to do it herself. I know from many annual pilot medicals that I have a "right bundle branch block", but the ECG machine didn't do any auto analysis and neither nurse could interpret it to confirm that. I once annoyed a radiologist in Guys by predicting the result; despite being young, she was of the old school where patients weren't allowed to access that sort of information about themselves!
Then that was it. I was allowed to go and was on the bus back to the Park and Ride within three hours of ariving at the hospital. Everything looks fine at the moment, so I have to await a review of the test results by the senior "neph", and then I will get an appointment for a CT scan.
Assuming that the scan is OK, my transplant centre will then pass me on to the team at my brother's hospital in London where the surgery will actually take place (if it all goes to plan). Of course, if there's a problem then it's the end of the line as far as my involvement is concerned. At least there is already another perfect match donor available for Tim. At his recent routine appointment they expressed surprise that there were TWO perfect tissue type matches from siblings as they would normally only hope for such a good match from an identical twin (and not neccessarily even then). Mind you, a perfect match is far less significant than it used to be; I think it just reduces the cocktail of drugs that the recipient has to take and possibly also improves the probability of everything being fine; this seems a good thing, even if it's only a 1% improvement in the already high probability of a living donor's kidney still working well years later.
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