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!
Sunday 24 February 2013
Thursday 21 February 2013
The Waiting is Over
Well, it looks as though the waiting is over. Tim's latest results were not good and he saw the consultant today; as a result they have scheduled a transplant for end May/early June (three months ahead is normal).
Now it depends on me, it seems. Nothing is fixed for certain until they are certain about me, and there are a number of things that are still required or need to be repeated. Remember that I had all my testing last year done at my nearest transplant centre, and that I have had no more than the odd telephone contact with my brother's hospital - I've never been there. Hence, I am expecting a call at any time to talk about what else needs to be done, such as repeat tests and various interviews such as with the HTA.
Tim is being very good, saying that he wouldn't be offended if I changed my mind, but frankly that's not something that I have really considered. I saw the inside of three hospitals last year (as a patient or for donor tests), and that has not put me off; as I said at the beginning, I felt that my name as on this when I first heard about his illness, and that conviction is still with me. After all, he's my brother!
Now it depends on me, it seems. Nothing is fixed for certain until they are certain about me, and there are a number of things that are still required or need to be repeated. Remember that I had all my testing last year done at my nearest transplant centre, and that I have had no more than the odd telephone contact with my brother's hospital - I've never been there. Hence, I am expecting a call at any time to talk about what else needs to be done, such as repeat tests and various interviews such as with the HTA.
Tim is being very good, saying that he wouldn't be offended if I changed my mind, but frankly that's not something that I have really considered. I saw the inside of three hospitals last year (as a patient or for donor tests), and that has not put me off; as I said at the beginning, I felt that my name as on this when I first heard about his illness, and that conviction is still with me. After all, he's my brother!
Tuesday 20 November 2012
Still Waiting...
Well, the good news is that Tim's eGFR has risen back to 19%, although I don't know if he actually feels correspondingly better. The neph says that he is stable enough not to need another review until February (i.e. 3 months) - I think it was every six weeks. As I understand it, short of a literally miraculous recovery, he isn't going to get better because kidneys don't regenerate so this merely delays the inevitable. The general view is that he could very well stay at this sort of level for a year or two (but perhaps not!).
I am painfully aware that I'm not getting any younger; I was just turned 60 at the start of this process, and I'll be 61 by his next appointment; several hours babysitting my 23 month old grandson is enough to leave me totally exhausted! I surprised myself at getting through all the tests first time without difficulty, but I worry that I might just fail a re-test if this goes on too long. That would be pretty annoying for everyone, although at least there are other volunteers in the wings.
Patience never was a strong suit of mine; having made a decision, I'd far rather just get on with it.
I am painfully aware that I'm not getting any younger; I was just turned 60 at the start of this process, and I'll be 61 by his next appointment; several hours babysitting my 23 month old grandson is enough to leave me totally exhausted! I surprised myself at getting through all the tests first time without difficulty, but I worry that I might just fail a re-test if this goes on too long. That would be pretty annoying for everyone, although at least there are other volunteers in the wings.
Patience never was a strong suit of mine; having made a decision, I'd far rather just get on with it.
Sunday 23 September 2012
That Leads us to Who Knows Where, Who Knows When?
I think I have always known WHERE this road leads, but it's still a question of WHEN? We're now just waiting, it seems. Tim's eGFR remains in the high teens as it has done all year, and until it falls below 15% they don't intend to schedule any surgery. This might seem like a good thing but it does nothing for Tim's symptoms or his overall health, and I'm just impatient. Possibly at some stage I will visit his hospital just so they can meet me. They've had all the test results from my hospital since August, and since no news is good news in that respect, I know I'm all OK. When I visit I expect that I should have some interviews as these have been noticeably missing so far. All I've had was an initial chat with the transplant co-ordinator, and 30 minutes with a nephrologist.
On-line research shows many different approaches to donors and living kidney donation, which produces a huge variety of patient experiences. Places seem to have their own specific emphasis on certain aspects; some places in North America seem to favour multiple urine tests, sometimes of huge quantities! I seem to have got through the process so far at an amazing speed with a real lack of hassle, delay or aggravation. It really surprises me that, if Tim's eGFR had fallen in August (say) then the operation could have been done before Christmas - and I only got going on this in April! Other people wait for ages, with tests, repeat tests, worries, doubt, issues to be resolved and lots of aggravation; I think such delays can only add to the problems and doubt which a donor faces - surely they should try to make it easier and (especially) quicker? You can see why I feel pretty grateful for a pretty easy ride so far.
I'm still doing on-line research about people's actual experiences during their stay in hospital, looking especially for good tips on what to do/take/expect. There are some good ones out there but you are never sure how current they are, or whether they apply also in the UK... etc. I promise that I will add my own tips and experiences to the on-line library in due course.
There are also lots of other things that I will need to learn more about, such as pain management afterwards - I've never heard of most of the drugs that people talk about, far less understand why one is preferable to another. Some of the stories are almost scary and people can take ages to recover; conversely, some people recover without trouble and one went back to work after just TWO weeks!
Still, patience is a virtue, they say, and I'm certainly learning how to be patient. As I've said before, once I've made a decision my preference is to get on with it, not pussy-foot around waiting. I certainly have never had any idea of changing my mind, and any delay would not cause me to but it does just add to the overall stress.
On-line research shows many different approaches to donors and living kidney donation, which produces a huge variety of patient experiences. Places seem to have their own specific emphasis on certain aspects; some places in North America seem to favour multiple urine tests, sometimes of huge quantities! I seem to have got through the process so far at an amazing speed with a real lack of hassle, delay or aggravation. It really surprises me that, if Tim's eGFR had fallen in August (say) then the operation could have been done before Christmas - and I only got going on this in April! Other people wait for ages, with tests, repeat tests, worries, doubt, issues to be resolved and lots of aggravation; I think such delays can only add to the problems and doubt which a donor faces - surely they should try to make it easier and (especially) quicker? You can see why I feel pretty grateful for a pretty easy ride so far.
I'm still doing on-line research about people's actual experiences during their stay in hospital, looking especially for good tips on what to do/take/expect. There are some good ones out there but you are never sure how current they are, or whether they apply also in the UK... etc. I promise that I will add my own tips and experiences to the on-line library in due course.
There are also lots of other things that I will need to learn more about, such as pain management afterwards - I've never heard of most of the drugs that people talk about, far less understand why one is preferable to another. Some of the stories are almost scary and people can take ages to recover; conversely, some people recover without trouble and one went back to work after just TWO weeks!
Still, patience is a virtue, they say, and I'm certainly learning how to be patient. As I've said before, once I've made a decision my preference is to get on with it, not pussy-foot around waiting. I certainly have never had any idea of changing my mind, and any delay would not cause me to but it does just add to the overall stress.
Friday 31 August 2012
Altruistic Directed Kidney Donation?
ITV's "Tonight" programme last night was about an American website which matches altruistic kidney donors with suitable recipients. They claim to have matched over 250 altruistic donors with recipients (presumably mostly in the USA) although I didn't hear how long that took. Apparently they are now launching a website for the UK as well.
Now, it turns out that this is not illegal in the UK, but it is contrary to the "accepted" way of doing things here. In the UK, an "altruistic donor" is also called a "non-directed donor", because such a donor agrees to give a kidney to anyone (who is selected by the NHS, I presume). Since this was made legal in the UK in 2006, there has been only just over 100 altruistic donations made (the figure they quoted was 117). In this context, the US figure is quite significant.
The big question is whether this is the way to go? The samples of videos from the USA frankly made me cringe. I can see that there's an issue that the person who is loudest, with the best video and best self-promotion, is the one who gets a donor; this does not seem "fair". It almost seems like a beauty pageant where the most attractive person wins, and I really do not think that we want to go down that route, do we? I can understand why the NHS wants to preserve anonymity as it avoids lots of issues and makes the process simpler but, if selecting your recipient actually has a significant effect on the total number of altruistic donors, then surely that's a good thing?
As you can see, I have no decided view on this matter; there are pros and cons for both sides. However, I have a suggestion which is a compromise: given that the number of potential recipients far outweighs the realistic number of potential donors, why not let the donor (if they want to) specify (as I think they do on the US website) the type of person to whom they wish to donate and then select a receipient from a list of, say, 10 or 20 potential recipients? These recipients must be happy to know their donor, and would surely be tested anyway to allow them to be matched to the donor. Then the beauty parade is avoided as the NHS will have made their choice of the list on the basis of suitability and need (which is how I assume that they select a recipient already). The current system could work alongside this for those who prefer anonymity.
I'm sure that more will be heard about this website...
Changing the subject slightly, I never mentioned the result of my fasting blood sugar test. My score was 4.5 which of course is meaningless to most of us, but when I mentioned this on the phone to one of the transplant co-ordinators she said that 4.5 was "absolutely normal". After my experience with the renal ultrasound (see this earlier entry), I didn't want to ask if she had omitted the caveat "for a man of your age"!
Now, it turns out that this is not illegal in the UK, but it is contrary to the "accepted" way of doing things here. In the UK, an "altruistic donor" is also called a "non-directed donor", because such a donor agrees to give a kidney to anyone (who is selected by the NHS, I presume). Since this was made legal in the UK in 2006, there has been only just over 100 altruistic donations made (the figure they quoted was 117). In this context, the US figure is quite significant.
The big question is whether this is the way to go? The samples of videos from the USA frankly made me cringe. I can see that there's an issue that the person who is loudest, with the best video and best self-promotion, is the one who gets a donor; this does not seem "fair". It almost seems like a beauty pageant where the most attractive person wins, and I really do not think that we want to go down that route, do we? I can understand why the NHS wants to preserve anonymity as it avoids lots of issues and makes the process simpler but, if selecting your recipient actually has a significant effect on the total number of altruistic donors, then surely that's a good thing?
As you can see, I have no decided view on this matter; there are pros and cons for both sides. However, I have a suggestion which is a compromise: given that the number of potential recipients far outweighs the realistic number of potential donors, why not let the donor (if they want to) specify (as I think they do on the US website) the type of person to whom they wish to donate and then select a receipient from a list of, say, 10 or 20 potential recipients? These recipients must be happy to know their donor, and would surely be tested anyway to allow them to be matched to the donor. Then the beauty parade is avoided as the NHS will have made their choice of the list on the basis of suitability and need (which is how I assume that they select a recipient already). The current system could work alongside this for those who prefer anonymity.
I'm sure that more will be heard about this website...
Changing the subject slightly, I never mentioned the result of my fasting blood sugar test. My score was 4.5 which of course is meaningless to most of us, but when I mentioned this on the phone to one of the transplant co-ordinators she said that 4.5 was "absolutely normal". After my experience with the renal ultrasound (see this earlier entry), I didn't want to ask if she had omitted the caveat "for a man of your age"!
Friday 10 August 2012
...With Many A Winding Turn...
I've just returned from another day at my (relatively) local transplant hospital, after the last tests as described in my last post. These appointments were for a "CT Angiogram Renal/Abdominal", a Glomerular Filtration
Rate (GFR) test and a Renal DMSA; as expected it was quite a long day, but I must compliment the hospital for making it a relatively stress-free experience, as all three appointments were conducted at the times specified and I was not kept waiting unnecessarily. Sadly, the necessary bit of waiting involved two waits of 90 minutes and three waits of 60 minutes, but there was no getting around those. The good side of this is that I have now finished reading "Pilgrim's Progress" (at last).
The abdominal CT ("Computerised Tomography", in case you wondered) scan in Radiology was first. You lie down and are moved feet-first into a large doughnut-like machine which is basically a rotating X-Ray with some clever software to build up a 3D picture of whatever part of you they are interested in. Part of this 30 minute procedure is three timed injections of a surprisingly large quantity of an iodine solution; the radiographer fitted a cannula into my left arm to save me looking like a pin cushion after the whole day; I was surprised that radiographers could do this, and she was cautious as she got someone in to check it. I spent some time trying to calculate the quantity of iodine based on the size of the transparent container and eventually came up with 125ml ("almost an armful!"). I assume that the iodine goes to/through my kidneys and is picked up by the X-rays thus highlighting the interesting features like the number and position of arteries. You are warned that this iodine can have three effects: a hot flush, a metallic taste in your throat, or the feeling of sitting on a warm car seat (although I don't have such a device in my car so could only guess); this last one has also been described as a feeling that you are wetting the bed! I had only a hot flush on my palms and a slightly warm feeling in my nether regions.
The other two appointments were done in the adjacent "Nuclear Medicine Department". The GFR test starts with an injection and then the four subsequent blood tests (using the same cannula) will give an accurate figure for how well my kidneys are working - I think this is for future reference, as the eGFR has already told them that they work OK. For the Renal DMSA, you are injected with a small amount of radioactive fluid and after the 90 minute wait they do a scan which picks up the radioactivity and shows the distribution of arteries etc around your kidneys. (I think this confirms the CT scan.) Because of this radioactivity, you are shown to a different waiting area (with toilets marked "radioactive hazard"!) when you come back for the scan - this is to protect the staff like the receptionists who otherwise would suffer a particularly large unwanted dose over a long period from many patients like me hanging around near them. In doing the scan you lie down and they move a large scanner down to your body; I wondered if it had some sort of safety stop on the maximum travel as otherwise it could be a new way for someone to try and kill James Bond! Or perhaps by this time I was starting to fantasize. NB For this scan of my abdomen, I had to remove my shoes (why?) and was moved under the scanner to a position where my feet stuck out the other end in a draught! Just a small point...
I mentioned the Renal DMSA in my last post. Since then I have found out (from Wikipedia) that DMSA stands for dimercaptosuccinic acid, which makes me no wiser. It has the chemical the formula HO2CCH(SH)CH(SH)CO2H if you're into that sort of thing. Slightly worryingly, the Wikipedia articles on DMSA and dimercaptosuccinic acid do not mention its use for assessing kidney function, while the article on Renal Function does not mention DMSA at all. More questions for the list! [NB I also mentioned Di Franks' excellent website last time. I have also found that in fact she has covered the same topic of eGFR and Renal DMSA in some useful detail - see this link.]
In one of my long waits, I visited the Transplant Co-Ordinator to ask a couple of questions. Since this is my last visit to this hospital, I also wanted to thank her in particular for making my testing so painless (both literally and metaphorically). They will send my results to London and my further participation (if any!) in this process will all be there, so I won't see her again but I will keep her informed. As far as I am concerned, the Churchill Hospital in Oxford have been excellent throughout this process of tests, and I think they have all been wonderful to me - nurses, radiographers, phlebotomists and receptionists have all been happy, helpful, efficient, professional and just right in their approach to me. Well done, I say.
Finally, on being picked up by my wife, I kissed her after greeting her with the ultimate chat-up line: "Hiya. I'm Radioactive Man!"
The abdominal CT ("Computerised Tomography", in case you wondered) scan in Radiology was first. You lie down and are moved feet-first into a large doughnut-like machine which is basically a rotating X-Ray with some clever software to build up a 3D picture of whatever part of you they are interested in. Part of this 30 minute procedure is three timed injections of a surprisingly large quantity of an iodine solution; the radiographer fitted a cannula into my left arm to save me looking like a pin cushion after the whole day; I was surprised that radiographers could do this, and she was cautious as she got someone in to check it. I spent some time trying to calculate the quantity of iodine based on the size of the transparent container and eventually came up with 125ml ("almost an armful!"). I assume that the iodine goes to/through my kidneys and is picked up by the X-rays thus highlighting the interesting features like the number and position of arteries. You are warned that this iodine can have three effects: a hot flush, a metallic taste in your throat, or the feeling of sitting on a warm car seat (although I don't have such a device in my car so could only guess); this last one has also been described as a feeling that you are wetting the bed! I had only a hot flush on my palms and a slightly warm feeling in my nether regions.
The other two appointments were done in the adjacent "Nuclear Medicine Department". The GFR test starts with an injection and then the four subsequent blood tests (using the same cannula) will give an accurate figure for how well my kidneys are working - I think this is for future reference, as the eGFR has already told them that they work OK. For the Renal DMSA, you are injected with a small amount of radioactive fluid and after the 90 minute wait they do a scan which picks up the radioactivity and shows the distribution of arteries etc around your kidneys. (I think this confirms the CT scan.) Because of this radioactivity, you are shown to a different waiting area (with toilets marked "radioactive hazard"!) when you come back for the scan - this is to protect the staff like the receptionists who otherwise would suffer a particularly large unwanted dose over a long period from many patients like me hanging around near them. In doing the scan you lie down and they move a large scanner down to your body; I wondered if it had some sort of safety stop on the maximum travel as otherwise it could be a new way for someone to try and kill James Bond! Or perhaps by this time I was starting to fantasize. NB For this scan of my abdomen, I had to remove my shoes (why?) and was moved under the scanner to a position where my feet stuck out the other end in a draught! Just a small point...
I mentioned the Renal DMSA in my last post. Since then I have found out (from Wikipedia) that DMSA stands for dimercaptosuccinic acid, which makes me no wiser. It has the chemical the formula HO2CCH(SH)CH(SH)CO2H if you're into that sort of thing. Slightly worryingly, the Wikipedia articles on DMSA and dimercaptosuccinic acid do not mention its use for assessing kidney function, while the article on Renal Function does not mention DMSA at all. More questions for the list! [NB I also mentioned Di Franks' excellent website last time. I have also found that in fact she has covered the same topic of eGFR and Renal DMSA in some useful detail - see this link.]
In one of my long waits, I visited the Transplant Co-Ordinator to ask a couple of questions. Since this is my last visit to this hospital, I also wanted to thank her in particular for making my testing so painless (both literally and metaphorically). They will send my results to London and my further participation (if any!) in this process will all be there, so I won't see her again but I will keep her informed. As far as I am concerned, the Churchill Hospital in Oxford have been excellent throughout this process of tests, and I think they have all been wonderful to me - nurses, radiographers, phlebotomists and receptionists have all been happy, helpful, efficient, professional and just right in their approach to me. Well done, I say.
Finally, on being picked up by my wife, I kissed her after greeting her with the ultimate chat-up line: "Hiya. I'm Radioactive Man!"
Friday 13 July 2012
The Road is Long....
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.]
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.]
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