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.
Tuesday 20 November 2012
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.]
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.
Thursday 21 June 2012
Waiting, Waiting...
I've never been good at waiting patiently, and my tests on July 3rd still seem some way off. I think having made a decision, I like to see it implemented without delay, even though there is no urgency (yet).
Slight progress as been made as I had a blood sample taken at my GP's for a check of my blood sugar level. This was a "fasting" test, so I was not allowed to have anything to eat or drink from 10pm until the test at 8.30am, except water. My wife looked as sad as Mrs Doyle (on "Father Ted") when I refused the usual cup of tea at 7.15! The results are OK, apparently; I've not actually seen them but I've been told that they are on the computer system where (I've been assured) they can be seen by the hospital (as one would hope, given the amount spent on the NHS IT system!) so there's no need for me to take a letter with me. NB The GP was at pains to point out that he cannot necessarily see details of things about me that the hospital do, but the hospital can see all that he does to me. Seems fair enough.
I've also had an appointment at Radiology confirmed for July 3rd as well. It's going to be a busy day then, as not only will Radiology do an ultrasound (to check that I have two kidneys) but they'll also do a chest X-ray while I'm there (to check I've got two working lungs, I presume).
In the meantime, Tim has just had a routine appointment; his eGFR is stable at 19%, which is good news. Although a transplant is (as I understand it) inevitable, a delay in the inexorable fall of eGFR is a good thing at this time as they like to start dialysis at 10% and will plan the transplant at 15%. We wouldn't want it to suddenly fall, as that would precipitate an urgent need for dialysis or a transplant, when the donor is not yet fully tested and approved. I am well aware that my tests could easily yield some unexpected issue or question, so I'm not taking any of this for granted (especially at my age!).
Slight progress as been made as I had a blood sample taken at my GP's for a check of my blood sugar level. This was a "fasting" test, so I was not allowed to have anything to eat or drink from 10pm until the test at 8.30am, except water. My wife looked as sad as Mrs Doyle (on "Father Ted") when I refused the usual cup of tea at 7.15! The results are OK, apparently; I've not actually seen them but I've been told that they are on the computer system where (I've been assured) they can be seen by the hospital (as one would hope, given the amount spent on the NHS IT system!) so there's no need for me to take a letter with me. NB The GP was at pains to point out that he cannot necessarily see details of things about me that the hospital do, but the hospital can see all that he does to me. Seems fair enough.
I've also had an appointment at Radiology confirmed for July 3rd as well. It's going to be a busy day then, as not only will Radiology do an ultrasound (to check that I have two kidneys) but they'll also do a chest X-ray while I'm there (to check I've got two working lungs, I presume).
In the meantime, Tim has just had a routine appointment; his eGFR is stable at 19%, which is good news. Although a transplant is (as I understand it) inevitable, a delay in the inexorable fall of eGFR is a good thing at this time as they like to start dialysis at 10% and will plan the transplant at 15%. We wouldn't want it to suddenly fall, as that would precipitate an urgent need for dialysis or a transplant, when the donor is not yet fully tested and approved. I am well aware that my tests could easily yield some unexpected issue or question, so I'm not taking any of this for granted (especially at my age!).
Friday 8 June 2012
Countdown to Testing
The process moves forward, slowly. Almost three weeks after being told the result of my tissue typing, I now have a date for an appointment for further tests. This will be on July 3rd, when my local transplant centre will try to do, in one day, all the tests that they can do to see if I am suitable to be a donor. If I pass all those, then all further testing will have to be done at Tim's hospital in London as that is where the operation will be carried out.
I wasn't not totally sure of what tests they will do that day but, as I was writing, I just received the appointment letter (NB dated over a week ago!). They will take lots of blood samples, and will do a chest X-ray, an ECG and an ultrasound. The ultrasound will show if I have two kidneys (as some people don't, and never know it). Having held a private pilot's licence, I know the result that I should get from an ECG as I had one every year with my aviation medical. This is always quite funny when you tell the doctor/nurse/specialist what to expect as they seem to assume that you have never had one before.
I also have to do a fasting blood sample to monitor my blood sugar level, and they want me to do this with my local GP to save the travelling to the hospital.
If I fail any of these tests, then it's up to the next in line to be tested. That would be a setback for both me and Tim: in his case, it could delay an operation; in my case, it could mean that there is something major wrong with me. I suppose that getting an early diagnosis of a major issue would be a benefit in terms of treatment, but that would still be a bit of a blow. Of course, it could just be something ever so trivial which could be affected by the transplant operation but would have no obvious effect on my health.
Somewhere in all this there are meant to be interviews to make sure that you are fully aware of the implications of what you are doing, are not under any duress and are not receiving any payment. However, I'm not sure if that will happen on July 3rd or later. By that date Tim should have had his next check of eGFR so we might have an idea of how he is doing.
I wasn't not totally sure of what tests they will do that day but, as I was writing, I just received the appointment letter (NB dated over a week ago!). They will take lots of blood samples, and will do a chest X-ray, an ECG and an ultrasound. The ultrasound will show if I have two kidneys (as some people don't, and never know it). Having held a private pilot's licence, I know the result that I should get from an ECG as I had one every year with my aviation medical. This is always quite funny when you tell the doctor/nurse/specialist what to expect as they seem to assume that you have never had one before.
I also have to do a fasting blood sample to monitor my blood sugar level, and they want me to do this with my local GP to save the travelling to the hospital.
If I fail any of these tests, then it's up to the next in line to be tested. That would be a setback for both me and Tim: in his case, it could delay an operation; in my case, it could mean that there is something major wrong with me. I suppose that getting an early diagnosis of a major issue would be a benefit in terms of treatment, but that would still be a bit of a blow. Of course, it could just be something ever so trivial which could be affected by the transplant operation but would have no obvious effect on my health.
Somewhere in all this there are meant to be interviews to make sure that you are fully aware of the implications of what you are doing, are not under any duress and are not receiving any payment. However, I'm not sure if that will happen on July 3rd or later. By that date Tim should have had his next check of eGFR so we might have an idea of how he is doing.
Monday 28 May 2012
Volunteering and Testing
One thing I have realised already in this process is that, to a certain extent, the potential Living Donor (LD) has to take charge of the testing process. Unlike any other operation, you are not ill and you do not need the surgery - you are a volunteer and can back out at any time. Part of the testing process ensures that you are indeed of sound mind and are doing it without coercion. The transplant centre staff clearly are at pains to NEVER put any pressure on potential donors, as it is illegal and they would not want to be accused of this at a later stage. Logically, therefore, they are not going to order your tests as though you were a patient, with the occasional reference back to you to make sure that you are still up for it. Rather, they almost want the potential donor to reaffirm at every stage his/her decision to donate; it's as though volunteering once is not enough, you are repeatedly volunteering. So, I guess if it all goes quiet in the process, it's time to take the initiative - phone the transplant co-ordinator and talk about the next steps.
This could be one reason why a common theme among LDs is that the whole thing seemed to take ages. In my case I don't actually think that we should be slow to get the show on the road as the intended recipient is not getting any better!
I think another reason for a slow process is that the medical profession likes to do things in sequence, not concurrently. To me, it is quite reasonable that you should wait for one test result before actually doing the next expensive test, but if there's then a long wait for that expensive one, it would seem reasonable to book it before getting the results of the previous test - you could always cancel it if you fail the previous test. I've had that sort of thing at the dentist, trying to book a follow-up appointment (typically three or four weeks) before the routine examination when you know for a fact that there will be follow-up work. Talking of dentists, I've just had a routine check up and, as I suspected, a bridge has failed and is only held in by the adjacent teeth. At least that issue won't get in the way of donating a kidney!
This could be one reason why a common theme among LDs is that the whole thing seemed to take ages. In my case I don't actually think that we should be slow to get the show on the road as the intended recipient is not getting any better!
I think another reason for a slow process is that the medical profession likes to do things in sequence, not concurrently. To me, it is quite reasonable that you should wait for one test result before actually doing the next expensive test, but if there's then a long wait for that expensive one, it would seem reasonable to book it before getting the results of the previous test - you could always cancel it if you fail the previous test. I've had that sort of thing at the dentist, trying to book a follow-up appointment (typically three or four weeks) before the routine examination when you know for a fact that there will be follow-up work. Talking of dentists, I've just had a routine check up and, as I suspected, a bridge has failed and is only held in by the adjacent teeth. At least that issue won't get in the way of donating a kidney!
Friday 25 May 2012
Tissue Typing Result
Well, I've been on holiday for a week and on the first day away I was called and given my tissue typing result. It seems that I'm a perfect match for Tim and, as it happens, I already knew that Nick was also a perfect match. We had had a discusion about which of us potential donors should be tested first. Nick had realised that logically it would be better if I took precedence as he and Tim run a company together, whereas I'm retired; I wasn't going to argue as I had always felt in my bones that this had my name on it (as I've mentioned before).
So, a week ago I called Nick to confirm that decision and then rang the transplant co-ordinator at Tim's hospital. Having told her of our decision I rather expected that things would start to happen fairly quickly. Back from holiday yesterday I rang the transplant co-ordinator at my local hospital; she knew the tissue typing result but had not been told of our decision! I'm very glad that I rang her as it would have been annoying if nothing had happened for a few weeks before someone realised that communications had failed - you can see why things can take longer than you expect. I think that one has to take charge of this sort of thing and not be a passive patient. Anyway, now she will sort out the next step and very soon I'll be back there for a whole set of tests in a single day.
I think their process is that having found a donor who passes all the tests, they wait until the recipient's GFR drops to 15% then schedule the operation so it's done before it gets to 10%. His last figure was 19% and they cannot predict whether it will stay around there for ages or suddenly fall. Of course, we don't know if I will pass all the tests so I think we should get on with this soonest, thus leaving plenty of time for other volunteers to be tested as required.
NB I'm still not sure why the cross-matching hasn't been done yet. I think they said they'll do it later but it seems to me quite important that my blood doesn't get attacked by his!
So, a week ago I called Nick to confirm that decision and then rang the transplant co-ordinator at Tim's hospital. Having told her of our decision I rather expected that things would start to happen fairly quickly. Back from holiday yesterday I rang the transplant co-ordinator at my local hospital; she knew the tissue typing result but had not been told of our decision! I'm very glad that I rang her as it would have been annoying if nothing had happened for a few weeks before someone realised that communications had failed - you can see why things can take longer than you expect. I think that one has to take charge of this sort of thing and not be a passive patient. Anyway, now she will sort out the next step and very soon I'll be back there for a whole set of tests in a single day.
I think their process is that having found a donor who passes all the tests, they wait until the recipient's GFR drops to 15% then schedule the operation so it's done before it gets to 10%. His last figure was 19% and they cannot predict whether it will stay around there for ages or suddenly fall. Of course, we don't know if I will pass all the tests so I think we should get on with this soonest, thus leaving plenty of time for other volunteers to be tested as required.
NB I'm still not sure why the cross-matching hasn't been done yet. I think they said they'll do it later but it seems to me quite important that my blood doesn't get attacked by his!
Friday 11 May 2012
On Line Research
I guess most potential kidney donors do the same as me - search the internet for answers to questions and, especially, for stories from people who have done it. There is one major caution here - you must make sure that what you find is clearly dated, as medical procedures have clearly been moving very quickly. It is easy to read a story about breaking or removal of ribs to facilitate kidney removal and think "that doesn't sound very nice"; then you discover that it was written in 1999 or 2001 which really is ancient history as far as kidney donation goes. A major advance is that laparascopic (key hole) surgery now seems to be almost universal unless there are specific medical reasons for the older method, which is rare these days. As a consequence of this and other changes, donors are now discharged from hospital far more quickly than in the past, which can only be a good thing in principle (so long as you actually are fit enough!).
The precise testing and the order seem to be very different wherever you go - there are lots of similarities but the differences could lead you to have some real confusion! There are differences between the British and American approaches, and there are differences between hospitals so even if you find a recent experience on line, don't assume that what you read is what you will go through. Absorb the information and balance it with other people's experiences, then store it as a question to ask when you finally meet a specialist. I've already stored for later one big question about pain management; I hope this has improved as well because I have found some poor reports from 10-15 years ago.
I have to mention one particular blog which I found last night. It's called "the kidney thing" and it is clever, informative and funny - see if you like it.
The precise testing and the order seem to be very different wherever you go - there are lots of similarities but the differences could lead you to have some real confusion! There are differences between the British and American approaches, and there are differences between hospitals so even if you find a recent experience on line, don't assume that what you read is what you will go through. Absorb the information and balance it with other people's experiences, then store it as a question to ask when you finally meet a specialist. I've already stored for later one big question about pain management; I hope this has improved as well because I have found some poor reports from 10-15 years ago.
I have to mention one particular blog which I found last night. It's called "the kidney thing" and it is clever, informative and funny - see if you like it.
Thursday 3 May 2012
Now I'm properly in this process
At last, I have had the first interview plus had a load of blood samples taken. It seemed to me that things were going a bit slowly so it was good to spend a couple of hours at my local hospital's transplant centre and get things started properly. It's also quite a funny feeling going for a hospital appointment when you are not actually unwell at all; then you get treated very well, as though you are valuable and an important person - is this now a mark of the NHS for all patients or are donors given special treatment? It was when I saw a stamp on my documents saying "Potential Live Donor" that I realised that perhaps a live donor is indeed valuable not just to the recipient but to the NHS, due to the fact that the donation will save the NHS thousands in the coming years.
I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process. The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now. He spent most of last year stable in the mid 20s. I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10. If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).
So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching. This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time. If just one of us is suitable then there's no real decision as we are both already willing and committed. If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer. I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative).
One question which was asked yesterday was how I felt about the idea. This is very hard to put into words, but I have no worries and no concerns. Why would I not offer? Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc. By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards. I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling. To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering. I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason. Why would I not want my brother to be healthy?
I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process. The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now. He spent most of last year stable in the mid 20s. I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10. If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).
So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching. This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time. If just one of us is suitable then there's no real decision as we are both already willing and committed. If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer. I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative).
One question which was asked yesterday was how I felt about the idea. This is very hard to put into words, but I have no worries and no concerns. Why would I not offer? Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc. By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards. I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling. To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering. I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason. Why would I not want my brother to be healthy?
Monday 23 April 2012
Diverted by a Colonoscopy
Well, I could now give full details of what is involved in a colonoscopy, but I'll spare you the details. Suffice it to say that it's quite odd seeing your own insides on a TV screen. The staff were all wonderful and I have nothing but praise for the way I have been treated at the local hospitals. The procedure itself actually wasn't too bad - the worst bit was the preparation for it when you twice swallow a solution of magnesium citrate. If you know what that does, then you will share my discomfort; if you don't know, google it and be happy it's not you.
They removed a single polyp from me and that had to be sent for biopsy. I was told that it looked OK based on the doctor's knowledge and experience of these things, and it was duly confirmed as "normal" just over a week later. They'll want me to go through the whole thing again in three years just to see if anything has changed. So, right now, I'm fit and healthy after that scare and I'm back on track in the kidney donor process.
The speed of this whole thing has been remarkable: I had the letter with the failure result on a Wednesday, was seen for assessment the following Tuesday, underwent the (slightly unpleasant) "further investigation" on the Thursday of the week following and received the biopsy result eight days later (if no samples are taken then you are told you're clear at once). That made 23 days from start to finish, including Easter. I certainly cannot complain about the NHS!
I understand that the next step is tissue typing and cross-matching to see if my brother and I are compatible. The transplant nurse in London has persuaded another local hospital near here to do this to save me trips to London and this is now booked for next week. If this is OK then there are lots more tests they want to do, about which I have no detailed knowledge at present. I know they will also want to assess me mentally to make sure I know what I'm doing and also to be sure that I'm not being paid...!
In the colonoscopy preparation meeting I was asked how I felt about the situation. I didn't really know at first but realized that in fact I was quite annoyed as the threat of cancer was getting in the way of the possibility of helping my brother. That question did make me wonder about how I felt about undergoing a (personally unnecessary) major operation voluntarily, even to help my younger brother. To my surprise I realized that I'm not in the least bit fazed about it; it just seems part of life in the same way that I accepted the possibility of having cancer myself. You've got to die of something, after all!
They removed a single polyp from me and that had to be sent for biopsy. I was told that it looked OK based on the doctor's knowledge and experience of these things, and it was duly confirmed as "normal" just over a week later. They'll want me to go through the whole thing again in three years just to see if anything has changed. So, right now, I'm fit and healthy after that scare and I'm back on track in the kidney donor process.
The speed of this whole thing has been remarkable: I had the letter with the failure result on a Wednesday, was seen for assessment the following Tuesday, underwent the (slightly unpleasant) "further investigation" on the Thursday of the week following and received the biopsy result eight days later (if no samples are taken then you are told you're clear at once). That made 23 days from start to finish, including Easter. I certainly cannot complain about the NHS!
I understand that the next step is tissue typing and cross-matching to see if my brother and I are compatible. The transplant nurse in London has persuaded another local hospital near here to do this to save me trips to London and this is now booked for next week. If this is OK then there are lots more tests they want to do, about which I have no detailed knowledge at present. I know they will also want to assess me mentally to make sure I know what I'm doing and also to be sure that I'm not being paid...!
In the colonoscopy preparation meeting I was asked how I felt about the situation. I didn't really know at first but realized that in fact I was quite annoyed as the threat of cancer was getting in the way of the possibility of helping my brother. That question did make me wonder about how I felt about undergoing a (personally unnecessary) major operation voluntarily, even to help my younger brother. To my surprise I realized that I'm not in the least bit fazed about it; it just seems part of life in the same way that I accepted the possibility of having cancer myself. You've got to die of something, after all!
Wednesday 4 April 2012
The Rocky Road
Somehow I didn't think that this would be easy. The decision to offer a kidney to my brother was easy I thought but, as a pretty fit person all my life, I was not ready for what has occurred almost concurrently:
I passed 60 quite recently, and as a result was invited to participate in a bowel cancer screening programme. My first samples (I won't go into details!) were rated as "unclear" so they asked me to do another set which were "normal" but, just to be sure, I was asked to do a third set of samples. This came back last week as "abnormal", together with an invitation to attend a meeting at my local hospital. This meeting was yesterday (they don't hang around!) and I am now booked in for a colonoscopy on Thursday next week (that sounds like a bundle of laughs).
It turned out that my sample results actually were encouragingly low: on the first set, only one out of six showed any symptoms, and it was the same on the third set. Thus I have reached this situation on the least possible amount of positive results, i.e. just two out of eighteen. Apparently 2% of people on this routine screening get an abnormal result: five of every ten who have a colonoscopy have no further issue; four of every ten have some other cause like piles or polyps, and just one in ten actually has bowel cancer. Immediately after the colonoscopy you are told if they have taken any samples for biopsy - if not you are clear. Biopsy results are available within a week, so either way I will know the results within twenty three days of getting the original letter, which is pretty good I think. We are all too readily critical of the NHS, in my view.
In the meantime, I have already spoken to the transplant nurse and explained the situation. She will progress the question of tissue samples with my local hospital and then we await the outcome of the colonoscopy. If I'm OK, I can then get back on this road to becoming a live transplant donor, which should then be a bit less rocky!
I passed 60 quite recently, and as a result was invited to participate in a bowel cancer screening programme. My first samples (I won't go into details!) were rated as "unclear" so they asked me to do another set which were "normal" but, just to be sure, I was asked to do a third set of samples. This came back last week as "abnormal", together with an invitation to attend a meeting at my local hospital. This meeting was yesterday (they don't hang around!) and I am now booked in for a colonoscopy on Thursday next week (that sounds like a bundle of laughs).
It turned out that my sample results actually were encouragingly low: on the first set, only one out of six showed any symptoms, and it was the same on the third set. Thus I have reached this situation on the least possible amount of positive results, i.e. just two out of eighteen. Apparently 2% of people on this routine screening get an abnormal result: five of every ten who have a colonoscopy have no further issue; four of every ten have some other cause like piles or polyps, and just one in ten actually has bowel cancer. Immediately after the colonoscopy you are told if they have taken any samples for biopsy - if not you are clear. Biopsy results are available within a week, so either way I will know the results within twenty three days of getting the original letter, which is pretty good I think. We are all too readily critical of the NHS, in my view.
In the meantime, I have already spoken to the transplant nurse and explained the situation. She will progress the question of tissue samples with my local hospital and then we await the outcome of the colonoscopy. If I'm OK, I can then get back on this road to becoming a live transplant donor, which should then be a bit less rocky!
Saturday 31 March 2012
The Situation Moves on
The current crisis came to a head when my brother went for a routine check-up a few weeks ago. Six weeks after the previous one, his kidney function (eGFR) was found to have fallen by a further 3% to only 18%. It seems that a transplant is usually desirable when it reaches 10%, so he hasn't got far to go if it carries on deteriorating at that rate.
The first requirement for a donor is to be of the right blood group. My brother is O Pos and I knew anyway that I am O Pos as well, as it was embossed on the HM Forces ID card for 16 years (and hopefully is correct!). My wife has also volunteered and she knows she is O Pos, being a long-standing blood donor. The other didn't know and had to find out; it turns out that just one other potential donor is also O Pos, but various other siblings have been ruled out, so at present there are three of us on the list. NB I found out later that the Rhesus Negative/Positive bit is irrelevant to kidney transplants.
The next step is matching tissue types. This can be done at any hospital which would save me a 60 mile each way trip, so I'll see what happens after I have spoken to the transplant nurse on Monday
There is a lot about this process which I don't know, but I found the Kidney Research UK website to be very helpful.
The first requirement for a donor is to be of the right blood group. My brother is O Pos and I knew anyway that I am O Pos as well, as it was embossed on the HM Forces ID card for 16 years (and hopefully is correct!). My wife has also volunteered and she knows she is O Pos, being a long-standing blood donor. The other didn't know and had to find out; it turns out that just one other potential donor is also O Pos, but various other siblings have been ruled out, so at present there are three of us on the list. NB I found out later that the Rhesus Negative/Positive bit is irrelevant to kidney transplants.
The next step is matching tissue types. This can be done at any hospital which would save me a 60 mile each way trip, so I'll see what happens after I have spoken to the transplant nurse on Monday
There is a lot about this process which I don't know, but I found the Kidney Research UK website to be very helpful.
Monday 26 March 2012
My Brother
My name is Matthew. For me, this journey started several years ago; my brother Tim mentioned casually that he had some problem with his kidneys and might need a transplant in the distant future if it continued to deteriorate. He is seven years younger than me and so was probably about 47 at the time, which seems a bit early in life to be having such problems. The thought then flitted across my mind that perhaps I should offer one of mine, but I heard no more about it and the problem seemed to have disappeared.
Then in February 2012 my mother asked if I had "heard about Tim". It transpired that his kidneys had indeed deteriorated and were now approaching the stage at which a transplant would be required. I called him and we chatted about his condition. He said something about waiting for a (dead) donor and I at once said that he could have one of mine. He laughed and said that I was about sixth on the list (we come from a large family). Some weeks later I received an e-mail sent by his wife to those of us who had made the offer. Basically the deterioration now was so much that the hospital had asked him to actively find a live donor, or rather two. The first question is blood group; Tim's is Type O and the hospital will take the first two volunteers who are compatible and see if either is a match in tissue type as well; if neither is, then they will work down the list!
Having once been in the armed forces I knew my blood group as it was embossed on my ID card. Personally I have that feeling in my bones that I will be the donor. You might know the feeling as well; it's a feeling of certainty which I have had just a few times in the past. Once was when I entered a competition (for me, a rare event) and was not at all surprised when I won; another time was when I wrote a letter to a national newspaper and just felt I knew that it would be published (it was).
Thus we got to a rather odd situation where five siblings had offered a kidney; we were asked to sort out between ourselves who would contact the hospital. At this stage in the proceedings only one of the others seems to know their blood group so we are waiting for some answers. In the meantime my own wife Jane has also volunteered as she also knows her blood group is compatible, being a long-time blood donor.
Then in February 2012 my mother asked if I had "heard about Tim". It transpired that his kidneys had indeed deteriorated and were now approaching the stage at which a transplant would be required. I called him and we chatted about his condition. He said something about waiting for a (dead) donor and I at once said that he could have one of mine. He laughed and said that I was about sixth on the list (we come from a large family). Some weeks later I received an e-mail sent by his wife to those of us who had made the offer. Basically the deterioration now was so much that the hospital had asked him to actively find a live donor, or rather two. The first question is blood group; Tim's is Type O and the hospital will take the first two volunteers who are compatible and see if either is a match in tissue type as well; if neither is, then they will work down the list!
Having once been in the armed forces I knew my blood group as it was embossed on my ID card. Personally I have that feeling in my bones that I will be the donor. You might know the feeling as well; it's a feeling of certainty which I have had just a few times in the past. Once was when I entered a competition (for me, a rare event) and was not at all surprised when I won; another time was when I wrote a letter to a national newspaper and just felt I knew that it would be published (it was).
Thus we got to a rather odd situation where five siblings had offered a kidney; we were asked to sort out between ourselves who would contact the hospital. At this stage in the proceedings only one of the others seems to know their blood group so we are waiting for some answers. In the meantime my own wife Jane has also volunteered as she also knows her blood group is compatible, being a long-time blood donor.
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