I went to an event entitled "Kidney Donor Day" recently. This was held at St George's and they invited all of the 2013 donors; it wasn't the whole day of course, just an hour in the morning with presentation of a certificate each, some photos, lots of chat and some food.
There were about 15 or 18 donors there; it was noticeable that we were mostly older people, presumably because the younger ones were at work! Sarah the surgeon thanked us all ("you can only do this once"!), made the presentations and gave us some figures. She said that this had been a record year for them: there were 45 live donors last year at St George's, and 140 transplants in total; there were five non-directed donors so I presume that these are not included in the 145 as they would have been to recipients elsewhere. (I hope I have remembered those figures correctly.)
It was a pleasant way of spending a day, and seeing the staff again. However, I left with a funny feeling inside: this was completely over. I can indeed only do it once and I've done it. It does rather raise the question: what can you ever do only once (when alive), as opposed to doing something for the first time? There are a few similar medical things like having your appendix or gall bladder out but these seem entirely medical as opposed to altruistic.
I am very well and so is Tim; he wrote in a recent e-mail that "I
feel better than I have felt for I do not know how many years". We now compare creatinine levels - it seems that the two kidneys are both performing even better now they are apart! I am now getting my old energy back, and it does seem a bit harder than
it used to but there again, I am now old enough for a Bus Pass.
I will possibly post a photo of the event when they are received, and then I'll come back here for the year anniversary in October. I hope that my regular readers have found my story interesting, and that reading these experiences will benefit anyone thinking of donating a kidney. DO IT! There's nothing to be frightened of, it's a great experience and it's a wonderful gift to give.
Tuesday 25 February 2014
Friday 31 January 2014
100 Day Update on Transplant
Following my last angry post a couple of weeks ago (see here), I feel I should update the situation on Tim. He had a good recovery once he was out of the hospital's "care" and after being seen as an out-patient by the right (senior) consultant. His infection has gone entirely and he has now had over ten days of low readings for everything critical (creatinine and Tacrolimus).
Last week he sent me one of those "really nice to get" e-mails in which he said that "I am feeling much better than I have since the op and for I don't know how long before that" and then another this week where he added "I just feel like doing more than I have been doing and thoroughly enjoying it!" I think it's fair to say that my brother is well and almost back to his old self; that makes me very happy indeed.
As for me, I am just very thankful that I have been able to help him; our prayers (and those of several hundred others) have been answered in a quiet but dramatic sort of way, and we praise the Lord for his many blessings to us. I am still amazed at how my own recovery was free from pain and I had no real issue at all in the entire process. It was a surprise to realise that the 100 day mark was reached a week ago, which sounds as though it should be a call for celebration. I have started to lift things and generally be far more energetic, so I have started work on some of the outstanding tasks around the house - all the things that were put on hold just before the op last October. Now I just need the weather to improve!
Last week he sent me one of those "really nice to get" e-mails in which he said that "I am feeling much better than I have since the op and for I don't know how long before that" and then another this week where he added "I just feel like doing more than I have been doing and thoroughly enjoying it!" I think it's fair to say that my brother is well and almost back to his old self; that makes me very happy indeed.
As for me, I am just very thankful that I have been able to help him; our prayers (and those of several hundred others) have been answered in a quiet but dramatic sort of way, and we praise the Lord for his many blessings to us. I am still amazed at how my own recovery was free from pain and I had no real issue at all in the entire process. It was a surprise to realise that the 100 day mark was reached a week ago, which sounds as though it should be a call for celebration. I have started to lift things and generally be far more energetic, so I have started work on some of the outstanding tasks around the house - all the things that were put on hold just before the op last October. Now I just need the weather to improve!
Friday 17 January 2014
Treatment of Transplant Patients
It was pretty clear to me as soon as we arrived at St George's for the operation (now three months ago!) that transplant patients, both donor and recipient, seemed to be very well treated. In the course of my stay in hospital (10am Tuesday to 1pm Friday) there were very few members of staff who didn't look and act as though they really were concerned for me.
Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.
In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)
However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking. Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"
In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.
I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts. It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?
Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.
In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)
However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking. Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"
In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.
I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts. It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?
Thursday 19 December 2013
Keeping Patients Informed
At my six week check, the consultant suggested that I could get access to "PatientView". This is an on-line IT system which does what it says - it lets patients view things about themselves, like their results. My brother Tim has been using it for some time, but I hadn't appreciated that I would be allowed to use it as well. It used to be called RenalPatientView but is now getting rolled out to include other specializations. So I filled in the form as suggested and, after a very short wait and an exchange of e-mails, I now have access to this nice little system which allows me to see what their records have about me, from two different hospitals. This will be useful and interesting as I shall be going back for an annual check up for the rest of my life, and it will save me trying to keep track of things like the change in my eGFR.
Knowing that I was to get this access, I did not call to find out my results from Dec 3rd, but waited to see them on-line. The good thing was that my eGFR has gone up to 50, having been 44 a week after the op. So my remaining kidney is manfully responding to the new demand placed on it. I shall be following that figure avidly over the coming years; it will of course never again reach the giddy heights of 80 which was the sort of figure I had pre-op, as you can't expect that much of one kidney. I'm quite happy with anything over 50, and it will be interesting to see where it settles.
In actual fact, this system is potentially so useful that I'm sure everyone will one day have access to something like it. One benefit is that you don't have to telephone for your blood test results - you just check the system a day or two later and there they are. This will save the staff time as well as saving the patient's phone bill. There's obviously a cost but the overall benefit to patients must be considerable, if only to take away that feeling of "there's something they are not telling me"!
Knowing that I was to get this access, I did not call to find out my results from Dec 3rd, but waited to see them on-line. The good thing was that my eGFR has gone up to 50, having been 44 a week after the op. So my remaining kidney is manfully responding to the new demand placed on it. I shall be following that figure avidly over the coming years; it will of course never again reach the giddy heights of 80 which was the sort of figure I had pre-op, as you can't expect that much of one kidney. I'm quite happy with anything over 50, and it will be interesting to see where it settles.
In actual fact, this system is potentially so useful that I'm sure everyone will one day have access to something like it. One benefit is that you don't have to telephone for your blood test results - you just check the system a day or two later and there they are. This will save the staff time as well as saving the patient's phone bill. There's obviously a cost but the overall benefit to patients must be considerable, if only to take away that feeling of "there's something they are not telling me"!
Sunday 8 December 2013
A Surprise Gift
I had a small package arrive in the post on Friday. It didn't look like a Christmas present, and it's a bit soon for that anyway. The padded bag was about A4 size and an inch thick, with an unfamiliar postmark - I don't know anyone in Bristol. Opening it revealed a small box and a letter from the Chief Executive of NHS Blood and Transplant which thanked me for my donation.
This is what the box contained:
It's sterling silver and about 2 cm in diameter. It's a design by Liz Welch which incorporates a crossed anchor as a symbol of hope and an Ankh to represent zest for life. It also looks to me like one person reaching out to another.
The idea of an award had been puzzling me. In hospital after the operation, the transplant nurse had mentioned something about an award, but this (understandably) was not very high in my priorities at the time so I had (most unusually!) asked no questions. Subsequently, I had looked on-line for more information and all that I had found was the new Order of St John award (see this link) which seemed to be for the relatives of deceased donors and not living donors (although some websites were not clear on this). Rigorous searching for an award on the NHSBT website revealed nothing relevant and so dismissed the question; however, having received it, I now realise that I should have been searching for "badge" not "award"!
Anyway, it looks good and I shall wear it with pride whenever I am wearing something appropriate to put it on - I'm not sure it looks right on a jersey or rugby shirt!
This is what the box contained:
It's sterling silver and about 2 cm in diameter. It's a design by Liz Welch which incorporates a crossed anchor as a symbol of hope and an Ankh to represent zest for life. It also looks to me like one person reaching out to another.
The idea of an award had been puzzling me. In hospital after the operation, the transplant nurse had mentioned something about an award, but this (understandably) was not very high in my priorities at the time so I had (most unusually!) asked no questions. Subsequently, I had looked on-line for more information and all that I had found was the new Order of St John award (see this link) which seemed to be for the relatives of deceased donors and not living donors (although some websites were not clear on this). Rigorous searching for an award on the NHSBT website revealed nothing relevant and so dismissed the question; however, having received it, I now realise that I should have been searching for "badge" not "award"!
Anyway, it looks good and I shall wear it with pride whenever I am wearing something appropriate to put it on - I'm not sure it looks right on a jersey or rugby shirt!
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.
Wednesday 13 November 2013
Pain
It is now four weeks since Tim and I were operated on St Georges; the time seems to have flown past and I have healed well, while Tim is also doing very well. Most people I have spoken to seem to have an expectation of kidney donors suffering some considerable pain for a long period. I suppose in a way that was my understanding, although I think that possibly people are just preparing you in case you suffer such pain; then, when you don't, you feel happy about the situation.
Whilst I was training in the RAF (a very long time ago), the often-heard mantra was that "pain is only in the mind"; an alternative was that "pain is for wimps". When younger, I used to endure the dentist without an anaesthetic as I found that the pain of some b*****y great needle being stuck in the roof of your mouth was far worse than suffering the treatment without anaesthetic. (NB Yes, I know things have improved since and yes, that old dentist was an absolute thug and an awful dentist to boot.)
Today, I mentioned my almost complete lack of pain in the last four weeks to a friend who told me of an anaesthetist he knows who, like the RAF, also believes that pain is genuinely in the mind. I have to say that I think I agree. Over the years I have learned to relax in the dentist's chair. You start with your neck and work down through every part of you, consciously relaxing the tight muscles; when you reach your feet you start again, as those ones will have tightened up again by then!
One fairly recent experience of severe pain was when I had a small growth removed from my upper lip. This was done as day surgery under a local anaesthetic which was administered by the surgeon. He said "short sharp scratch" and proceeded to stick a needle in my upper lip for the next two or three minutes! I lay there trying to relax myself and became aware of the absolute streams of tears flowing down the side of my face to my ears and thence to the back of my neck. I have never before or since experienced anything remotely so painful - there are, I am told, a vast number of nerves in your lips, and I believe it. After the operation I said "You lied!" and he replied that he had to as if he told the truth then every patient would leave the theatre before the operation!
So, using the scale of my lip pain, I have been re-assessing the pain I have suffered in the last four weeks. Really, the worst pain was when my stomach generally objected to the whole idea and started acting up. The expanded stomach pressed on the largest wound which caused a significant awareness of its presence, but compared to my lips I don't think it even classes as pain, more just as severe discomfort. In the same way, in hospital I itched (a reaction to the morphine?) and couldn't sleep because I just couldn't get comfortable. There were times on the first day when any movement seemed to require care and many movements were impossible, but I suspect that this was as much due to my brain simply stopping me from trying as opposed to actually experiencing pain. Even when I sat on the edge of the bed and then stood up for the first time, it wasn't painful but rather I was afraid of being rushed when I felt very delicate.
I have no doubt that I have been very blessed in this experience. I would not like to give Potential Living Donors the idea that donating a kidney is always as pain-free as my experience, as I am sure it is not. I know that I could even now suddenly find myself doubled up, especially if attacked in my midriff by some wayward child, and I am not even going to try to touch my toes! We all react differently to pain, and I sympathize with those who suffer more than their fair share. However, I am sure that having a positive mental attitude to pain could be a solution for many people in a similar situation.
Whilst I was training in the RAF (a very long time ago), the often-heard mantra was that "pain is only in the mind"; an alternative was that "pain is for wimps". When younger, I used to endure the dentist without an anaesthetic as I found that the pain of some b*****y great needle being stuck in the roof of your mouth was far worse than suffering the treatment without anaesthetic. (NB Yes, I know things have improved since and yes, that old dentist was an absolute thug and an awful dentist to boot.)
Today, I mentioned my almost complete lack of pain in the last four weeks to a friend who told me of an anaesthetist he knows who, like the RAF, also believes that pain is genuinely in the mind. I have to say that I think I agree. Over the years I have learned to relax in the dentist's chair. You start with your neck and work down through every part of you, consciously relaxing the tight muscles; when you reach your feet you start again, as those ones will have tightened up again by then!
One fairly recent experience of severe pain was when I had a small growth removed from my upper lip. This was done as day surgery under a local anaesthetic which was administered by the surgeon. He said "short sharp scratch" and proceeded to stick a needle in my upper lip for the next two or three minutes! I lay there trying to relax myself and became aware of the absolute streams of tears flowing down the side of my face to my ears and thence to the back of my neck. I have never before or since experienced anything remotely so painful - there are, I am told, a vast number of nerves in your lips, and I believe it. After the operation I said "You lied!" and he replied that he had to as if he told the truth then every patient would leave the theatre before the operation!
So, using the scale of my lip pain, I have been re-assessing the pain I have suffered in the last four weeks. Really, the worst pain was when my stomach generally objected to the whole idea and started acting up. The expanded stomach pressed on the largest wound which caused a significant awareness of its presence, but compared to my lips I don't think it even classes as pain, more just as severe discomfort. In the same way, in hospital I itched (a reaction to the morphine?) and couldn't sleep because I just couldn't get comfortable. There were times on the first day when any movement seemed to require care and many movements were impossible, but I suspect that this was as much due to my brain simply stopping me from trying as opposed to actually experiencing pain. Even when I sat on the edge of the bed and then stood up for the first time, it wasn't painful but rather I was afraid of being rushed when I felt very delicate.
I have no doubt that I have been very blessed in this experience. I would not like to give Potential Living Donors the idea that donating a kidney is always as pain-free as my experience, as I am sure it is not. I know that I could even now suddenly find myself doubled up, especially if attacked in my midriff by some wayward child, and I am not even going to try to touch my toes! We all react differently to pain, and I sympathize with those who suffer more than their fair share. However, I am sure that having a positive mental attitude to pain could be a solution for many people in a similar situation.
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