Well, another year has gone by. Actually, it's more than a year as the annual appointment was slipped by three weeks by the Churchill, and I attended there on Tuesday this week for my "MoT". I was very impressed by the fact that the results were posted on PatientView at 6pm after being done at 1130am that same day!
The only slight worry I've had this year is that my creatinine went up at the six month point in June. I think this was for two reasons: firstly, Tim and I reckon that creatinine varies through the day; you need to be well hydrated and, for a consistent comparison, have the sample taken at the same sort of time of day each time. Annoyingly I forgot this when I made the appointment with my new GP's surgery in June and so it was not surprising that, at 8.50am, after just a bowl of cereal and a single cup of tea in the previous 10 hours, the reading was quite high, at 140. (They also did a cholesterol test even though I had not been fasting, so that was unsurprisingly very high.)
Secondly, the hospital's message about drinking more somehow seemed (to me) to be directed at
the recipient more than the donor, and also it seemed to be "for a
period of time" as opposed to "for ever"; I guess I was consuming only 1.5 to 2 litres per day in the form of tea and coffee. So in late September I discussed fluid intake with the transplant nurse at the Churchill (as lovely and helpful as ever!) and we decided that I just need to drink more. Since then, I have made a concerted effort to drink water, and also now I monitor how much I drink every day; I now have more like 1 to 1.5 litres as tea/coffee, and about the same in pure water, so my daily total is about 2.5 litres. I discussed this with the consultant and he was happy with only 2 litres as a target, comprising half tea or coffee and half water or cordial. He was clear on the need to avoid any drinks with salt (like what - Bovril or Tequila?), and even agreed that beer can count to the total, so long as you are staying within a limit of three units of alcohol per day on average - I reckon I average two units, although I admit to the occasional day in the summer when I had a couple of treble G&Ts or a couple of beers in the evening sunshine!
Having realized this in October and changed my habits for liquid intake, I have been hoping to see a decent improvement in things and I was pleased at a reading of 127 which is only 1 more than a year ago. If I'm honest I would say that I was hoping for an even lower figure, having been so conscientious about my hydration; perhaps my focus on that is too late?
At least my worries about aches, pains and tiredness do now seem to be a function of age - I was worried that some of them were sounding a bit like Tim's symptoms before the transplant!
My blood pressure was good at 120/79 - the consultant expressed envy of that! Everything else was in the range apart from cholesterol. He asked what I had done about this after last year's promise to see my GP about that; the answer was I had forgotten but my record showed that I had seen the GP in February - then I remembered that I had declined statins (as I reckon they make me sleep badly from a previous trial) and instead had made a few changes to my diet - less sugar, more skimmed milk, cutting fat off meat etc. However, he thinks I should see the GP again as it's still a bit high. Apart from that, hopefully that's it for another year.
http://www.heyfordhoofers.org.uk/
Showing posts with label GFR. Show all posts
Showing posts with label GFR. Show all posts
Wednesday, 23 December 2015
Tuesday, 3 December 2013
Six Week Check
I had my six week check this morning - I think that's meant to be six weeks after the operation, but in fact it is now exactly six weeks since the surgeon checked me on the week after the op. This little slippage is because the surgeon's discharge letter took ages to get to me, and I was waiting for it before booking the appointment. Eventually I gave up and booked it anyway. On Monday last week I chased them for the letter and on Wednesday it arrived, postmarked Monday. Guess what? On Thursday a copy of the letter arrived, postmarked Tuesday! Sigh.
The check up was done at the Churchill Hospital where I had my initial tests done, and was absolutely fine. I don't have the blood test results yet of course, but I shall now be getting access to the patient view thingy on-line where I will be able to see lots of stuff about me.
The consultant said that creatinine after the op was 149 which gives eGFR of 44. In March it was 81.4, so it's on the right side of 50% of what it was. This is what one would expect as my remaining kidney is the larger of the two, and that 44 should increase a bit in time as my own kidney reacts. So I look forward to today's blood test results (not forgetting that eGFR is really a very rough guide only).
My BP was checked twice today as the first reading was so low; the second was 112/71 which is still very low for me so I'll settle for that. I'll have bloods done again in six months by my GP and then back to Churchill in a year's time for the annual check. I made a point of seeing the transplant nurse who looked after me last year - it's lovely when even a person who just managed my tests over a year ago looks pleased to see me, and looks even more pleased to discover how well I am post-op. I feel very comfortable with the prospect of being in their care if I ever have any renal issue in the future. I feel that they, like St George's, really do look after kidney donors.
The check up was done at the Churchill Hospital where I had my initial tests done, and was absolutely fine. I don't have the blood test results yet of course, but I shall now be getting access to the patient view thingy on-line where I will be able to see lots of stuff about me.
The consultant said that creatinine after the op was 149 which gives eGFR of 44. In March it was 81.4, so it's on the right side of 50% of what it was. This is what one would expect as my remaining kidney is the larger of the two, and that 44 should increase a bit in time as my own kidney reacts. So I look forward to today's blood test results (not forgetting that eGFR is really a very rough guide only).
My BP was checked twice today as the first reading was so low; the second was 112/71 which is still very low for me so I'll settle for that. I'll have bloods done again in six months by my GP and then back to Churchill in a year's time for the annual check. I made a point of seeing the transplant nurse who looked after me last year - it's lovely when even a person who just managed my tests over a year ago looks pleased to see me, and looks even more pleased to discover how well I am post-op. I feel very comfortable with the prospect of being in their care if I ever have any renal issue in the future. I feel that they, like St George's, really do look after kidney donors.
Monday, 17 June 2013
Possible Progress
My brother reported to me recently that he had taken a few days off and visited the same place as last year at the same time. So he did the same walks along cliffs and beaches as last year. And he found that he was far less fit than last year and couldn't do these same activities as easily (or at all). But according to the hospital, his kidney function is still as good now as it was last year.
Now the kidney disease is the only thing wrong with him, so what's going on here? Why is he feeling worse when they say his condition has not changed? They haven't given him an answer, but there is now a suggestion from his consultant that as his quality of life is reducing, perhaps he should be given the choice of electing to have the transplant sooner rather than later. His eGFR is still hovering at or above the level where they would recommend the transplant but it seems that, in his case, they will accept the evidence of the reduced "quality of life" and ignore the eGFR figure. So, we could be back at the starting gate, looking at a possible operation in about October this year, by the sounds of it. I'm trying not to get worked up over this - they have changed their mind before so, until their team meeting agrees, I won't make any plans.
I once did a parachute jump. After training, I actually found it quite easy to get in the aircraft and we taxied out; I was committed and accepted the imminent event calmly. The decision had already been made and I wasn't reconsidering at that stage, just like now. Then at 2,000ft I waited my turn, and then did all the right things when the jump master shouted at me. I think that was the military part of me, responding to training and not looking down as I stood at the exit from the aircraft. In the same way, when I had my colonoscopy (see this entry), I just accepted the treatment and didn't worry at all about what these professionals were going to do to me, or the possible outcomes.
In any case, I think my approach is to take it as a decision made and look only at the practical issues. Perhaps I should think of it as though I was the one who was ill? In that case I accept that it has to happen somewhen; then my military training clicks in, I ignore the personal thoughts and just do what is needed.
Now the kidney disease is the only thing wrong with him, so what's going on here? Why is he feeling worse when they say his condition has not changed? They haven't given him an answer, but there is now a suggestion from his consultant that as his quality of life is reducing, perhaps he should be given the choice of electing to have the transplant sooner rather than later. His eGFR is still hovering at or above the level where they would recommend the transplant but it seems that, in his case, they will accept the evidence of the reduced "quality of life" and ignore the eGFR figure. So, we could be back at the starting gate, looking at a possible operation in about October this year, by the sounds of it. I'm trying not to get worked up over this - they have changed their mind before so, until their team meeting agrees, I won't make any plans.
I once did a parachute jump. After training, I actually found it quite easy to get in the aircraft and we taxied out; I was committed and accepted the imminent event calmly. The decision had already been made and I wasn't reconsidering at that stage, just like now. Then at 2,000ft I waited my turn, and then did all the right things when the jump master shouted at me. I think that was the military part of me, responding to training and not looking down as I stood at the exit from the aircraft. In the same way, when I had my colonoscopy (see this entry), I just accepted the treatment and didn't worry at all about what these professionals were going to do to me, or the possible outcomes.
In any case, I think my approach is to take it as a decision made and look only at the practical issues. Perhaps I should think of it as though I was the one who was ill? In that case I accept that it has to happen somewhen; then my military training clicks in, I ignore the personal thoughts and just do what is needed.
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, 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.
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.
Subscribe to:
Posts (Atom)