Interestingly last week one of the cross match tests became positive. This was for the element they were trying to remove at the beginning. The doctors expected this to happen and where watching closely to see what the effect was going to be. It was possible that this could stimulate rejection and further treatment etc would be required.
It would seem, even though this cross match test has become positive that the kidney is not reacting to the change and has actually improved in its function. My creatinine is now (today 117) which is normal. I don't think I have ever had a creatinine this low. I don't really understand how the cross match can become positive but yet no rejection. I guess it is because the organ is already in the body and the bodies fighting system is so confused and weak that it does not recognise it as a foreign target at the moment.
It was also interesting that they were keen to get past the 3 week hurdle- this is the time that the DR17 reappeared. I expect that this is the average time (in other units) when they see anitbodies reappearing and causing problems.
I was also thinking what they changes to me have been since having better blood results compared to dialysis. I got on ok with dialysis and stayed quite fit and well but do recognise that it does put a lot of stress on your body. I found
- itching of the body especially after dialysis
- very restrictive diet
- restrictive fluid intake
- fuzzy mind that made it hard to concentrate for long periods of time
- time constraints having to be dialysed 3 times a week
- problems sleeping
- restless leg syndrome
- variable energy levels
- calcium and phosphate lumps on the body (these have already started to dissappear)
I also found that you have to go into a survival mode - that in someways takes each day as it comes and makes you less focused and less driven this is largely down to the restrictions and perhaps lack of expectations from dialysis patients.
Many patients who have come off dialysis have commented to me how hard it is to adapt back to being a transplant patient and not attending dialysis sessions. I can understand this but don't feel the same- sure I miss some of the staff and patients on the nights I dialysed and can understand that people would miss the routine and companionship. Personally I am only to happy to not have to dialyse at the moment and to be honest don't miss the routine etc - I would like to keep in contact with many of the patients and staff because I look at them as friends and am truly honoured to know such a dedicated and kind bunch of people.
Off to watch some of my friends ice skate at the zoo (in the rain) and then going to the pub. First time I have been out for a drink and met up with friends for about 14 weeks. 1/4 year.....
Wednesday 28 November 2007
Saturday 24 November 2007
The beach
I am in Devon this weekend at my parents. The first time in about ten weeks when I have had the time and energy to leave Bristol. Went to Charmouth beach today, it is cold and windy. The sea was rough and high but it was good walking down the beach and watching the sunset.
I feel ok - the scar is healed and my muscles are starting to find their correct positions. It is still very much building up strength and confidence but that is fine. I know not to push it to hard but also know the importance of getting moving which helps to get the blood flowing and healing. It also makes you feel a bit more normal. I realise that I have lost quite a bit of fitness. When the process began I could easily run ten miles and walk 30, that was about 10 weeks ago, now I would not be able to run more than 15 metres and would not want to. I think I could at a push walk about 5 miles before I started to feel a bit painful in the scar/kidney area. I can also feel that my conditioning, muscle, breathing and heart rate are not at the same level of fitness as they were. But on the other hand I have just had a major operation and ten weeks off pretty hard core medical treatment that has put a lot of stress on my body.
For people who go through this process - desensitisation I cannot stress how important it is to get fit before you start it has helped me so much. It has enabled me to cope with things much better through the process.
I feel ok - the scar is healed and my muscles are starting to find their correct positions. It is still very much building up strength and confidence but that is fine. I know not to push it to hard but also know the importance of getting moving which helps to get the blood flowing and healing. It also makes you feel a bit more normal. I realise that I have lost quite a bit of fitness. When the process began I could easily run ten miles and walk 30, that was about 10 weeks ago, now I would not be able to run more than 15 metres and would not want to. I think I could at a push walk about 5 miles before I started to feel a bit painful in the scar/kidney area. I can also feel that my conditioning, muscle, breathing and heart rate are not at the same level of fitness as they were. But on the other hand I have just had a major operation and ten weeks off pretty hard core medical treatment that has put a lot of stress on my body.
For people who go through this process - desensitisation I cannot stress how important it is to get fit before you start it has helped me so much. It has enabled me to cope with things much better through the process.
Day 2
Blood results continued to get better and my urine started to become less red (less blood). I was becoming a bit more awake and was eating more. Doctors and nurses keeping a close eye on me, my blood results and urine output. Sunday was fine - I was told that day 4-7 was often when they probabilty of rejection was higher. Something to do with antibody build up.
Thursday 22 November 2007
Day 1 after the transplant
It is interesting that they call day 1 the day after the transplant. To me this is day 2 as a lot can happen in day 1! Day 2 was still a bit of a blur. I remember being hungry - I think I ate some hot chips with salt and vinegar. I was not allowed chips when on dialysis. I also continued to drink.
I was visited by my cousin, his wife and their 3 children. That was really good, they had come to Bristol to go to the science museum and to see us all. It is always funny to see kids in hopsitals especially the younger ones who always look a bit shocked and have been told to be on their best behaviour. I think that most kids naturally act properly in hospitals and often say some of the most inspiring and happy things out of everyone. I like the directness of the questioning and the wonder of things new. They are always interested in how long you are going to be ill and what everything does.
It was great to see them all - such a supportive bunch of people.
The rest of the day was fine. The doctors kept came and checked on me and my results continued to improve. I was passing lots of urine and having liquids pumped into me.
They wanted to get me out of bed. I understand the medical reasons for this but I personally do not get out of bed whem they say I should unless their is a very good reason. I believe that after a big operation when you have had a new organ placed in you that time is a great healer and movement and exertion at this time does no good. I do believe that you should try and move parts of your body and try and deep breath to exercise your lungs and get some of the aneasthetic and breathing tube saliva that accumulated during the operation out of your system. Also it is really uncomfortable moving around at this time. They give you aspirin and heparin which helps to prevent dvt (blood clots). This never used to happen but seems to be a good idea.
I must admit that things have advanced since my last transplant some 20 years ago. You have to take that stupid life bacteria drink. I am still not convinced by drinking bacteria especially when so immunosuppressed - that company must have a good sales team. You have these injections to stop clotting and take aspirin. (This I believe helped to cause some complications later day 4 or 5), you are take a pleurethra of antirejection pills and immunosuppression iv things - this is a good thing. The body does not have a clue who and what it is!!!
But basically it still comes down to the medical staff, nurses, the preparation before the transplant (x match) and a bit of luck. It is interesting going into hospital with the awareness of hospital infection - perhaps this is down to the press but it still does sit on your mind. I really did not want to get an infection as I had very very little immunity to fight anything off. I was aware of if nurses or doctors washed hands and other basic hygiene things. It was apparent that most nurses and doctors were excellent at this but the side was let down by a few, but on the whole I was impressed by the hygiene.
The hospital does suffer from being an old hospital with old buildings and resources. This makes things hard to clean and manage but it still not an excuse.
I still had all the monitoring equipment attached. I remember watching striclty come dancing but don't actually remember what happened - still taking those pain killers.
Not much else to report about this day. Just happy that things were going ok.
I was visited by my cousin, his wife and their 3 children. That was really good, they had come to Bristol to go to the science museum and to see us all. It is always funny to see kids in hopsitals especially the younger ones who always look a bit shocked and have been told to be on their best behaviour. I think that most kids naturally act properly in hospitals and often say some of the most inspiring and happy things out of everyone. I like the directness of the questioning and the wonder of things new. They are always interested in how long you are going to be ill and what everything does.
It was great to see them all - such a supportive bunch of people.
The rest of the day was fine. The doctors kept came and checked on me and my results continued to improve. I was passing lots of urine and having liquids pumped into me.
They wanted to get me out of bed. I understand the medical reasons for this but I personally do not get out of bed whem they say I should unless their is a very good reason. I believe that after a big operation when you have had a new organ placed in you that time is a great healer and movement and exertion at this time does no good. I do believe that you should try and move parts of your body and try and deep breath to exercise your lungs and get some of the aneasthetic and breathing tube saliva that accumulated during the operation out of your system. Also it is really uncomfortable moving around at this time. They give you aspirin and heparin which helps to prevent dvt (blood clots). This never used to happen but seems to be a good idea.
I must admit that things have advanced since my last transplant some 20 years ago. You have to take that stupid life bacteria drink. I am still not convinced by drinking bacteria especially when so immunosuppressed - that company must have a good sales team. You have these injections to stop clotting and take aspirin. (This I believe helped to cause some complications later day 4 or 5), you are take a pleurethra of antirejection pills and immunosuppression iv things - this is a good thing. The body does not have a clue who and what it is!!!
But basically it still comes down to the medical staff, nurses, the preparation before the transplant (x match) and a bit of luck. It is interesting going into hospital with the awareness of hospital infection - perhaps this is down to the press but it still does sit on your mind. I really did not want to get an infection as I had very very little immunity to fight anything off. I was aware of if nurses or doctors washed hands and other basic hygiene things. It was apparent that most nurses and doctors were excellent at this but the side was let down by a few, but on the whole I was impressed by the hygiene.
The hospital does suffer from being an old hospital with old buildings and resources. This makes things hard to clean and manage but it still not an excuse.
I still had all the monitoring equipment attached. I remember watching striclty come dancing but don't actually remember what happened - still taking those pain killers.
Not much else to report about this day. Just happy that things were going ok.
Update today
Looked at my blood results for today. My creatinine is 131 I think this is the lowest it has been for almost 20 years! I hope it stays there.
Day of operation
The day of the operation was a bit wierd. Strangely I was not at all nervous for myself. I was more nervous for my Dad and my mum and also a bit nervous for the medical team as they wanted this to be a success for a number of reasons. I was pleased that my brother and sister in law were in Bristol to support all of us and especially mum. Often in hospital it is the people waiting around that have the most stress.
Dad was wheeled off early in the morning around 8.30 ish and I did not leave for theatre until about 12. Going to theatre is always a bit of a strange feeling. As a child I used to absolutely hate it but now I am much more calm - although of course a bit nervous. Waiting around to go and knowing that one of your relatives is already being operated on is not great especially when they have never had an operation before.
When I finally left my mum and brother walked most of the way to the theatre and the nurse came to the "sleep room" the room where they put you to sleep. I was met by two anaesthetists. They kept looking into the theatre obviously waiting for the signal that we were good to go. The nurse was great - they are often the best support at this point in time. Eventually after what felt like hours they got down to business. One of the anaesthetists said lean forward - he was going to give me a nerve block in the lower spine. I was not up for this - I asked him if I had to have it and he said no - I could have it when I was a sleep but it would be more of a risk or I could go without. I opted for the later I had never had it before and it did not appeal to me - I would take the extra little bit of pain when I came round. They then put the funny stuff into the canulla - needle. I actually quite like this feeling now it basically makes your neck go very heavy paralyzes your body and makes your mind go fuzzy. They then gave me the actual injection that puts you to sleep. I used to fight the sleep sensation I would get to about 20 counting in my head - now I don't fight anymore I get to about 8 and basically allow myself to fall asleep.
The next thing I remember was coming round in recovery. I am normally relieved at this stage to still be alive and have sense but my first response this time was to see if dad was ok. He was being sick - so I knew he was fine. I also seem to remember being told it had been a success and that I was passing urine. The consultant who had planned the whole thing was there ensuring that things were working and hoping that I did not have an acute rejectin episode. I am not sure if they can do anything if this happens.
I remember being in quite a lot of pain in the bladder area (actually a lot of pain I think I am becoming a wimp) and having pain killers pumped into me. I was a bit sick but nothing to bad. I went in and out of sleep mode I remember coming back to the ward and being greated by everyone -mum etc and the doctors again. I also remember looking at dad and he was still being sick. He was experiencing the wonders of morphine - I am sure that you need to relax when you have painkillers and not fight the sensation. I was on a new type of iv pain killer that was brilliant. You did not fly round the room or your mind and kept some of your mental faculties.
The rest of that day was sleeping and drinking. I was also recieving liquid through a drip and had an antirejection medicine at some point during the day. Baxilimab. During the first few days I was pumped full of liquid, this is to get the kidney flushed and pumping properly. I think I passed about 4 litres of urine on the first day. That is probably more urine than I have passed in the past 2 years!!! I managed to come off the oxygen within a hour of arriving back from theatre. I hate being on oxygen - I like the feeling that I can breathe on my own.... I was attached to an oxygen monitor, heart monitor and blood pressure machine. I also had a drain coming out of the area where the kidney had come out of and had a catheter into my bladder up my private parts (this will become more relevant when I tell the story of day 3-4 later). I was in arc (acute renal care) and felt pretty good if not a bit sleepy, sore and buzzed up from pain killers. My observations and blood results were looking good. My creatine had halved, my phosphate had halved and my hb had dropped which would be expected after this kind of surgery.
Dad was wheeled off early in the morning around 8.30 ish and I did not leave for theatre until about 12. Going to theatre is always a bit of a strange feeling. As a child I used to absolutely hate it but now I am much more calm - although of course a bit nervous. Waiting around to go and knowing that one of your relatives is already being operated on is not great especially when they have never had an operation before.
When I finally left my mum and brother walked most of the way to the theatre and the nurse came to the "sleep room" the room where they put you to sleep. I was met by two anaesthetists. They kept looking into the theatre obviously waiting for the signal that we were good to go. The nurse was great - they are often the best support at this point in time. Eventually after what felt like hours they got down to business. One of the anaesthetists said lean forward - he was going to give me a nerve block in the lower spine. I was not up for this - I asked him if I had to have it and he said no - I could have it when I was a sleep but it would be more of a risk or I could go without. I opted for the later I had never had it before and it did not appeal to me - I would take the extra little bit of pain when I came round. They then put the funny stuff into the canulla - needle. I actually quite like this feeling now it basically makes your neck go very heavy paralyzes your body and makes your mind go fuzzy. They then gave me the actual injection that puts you to sleep. I used to fight the sleep sensation I would get to about 20 counting in my head - now I don't fight anymore I get to about 8 and basically allow myself to fall asleep.
The next thing I remember was coming round in recovery. I am normally relieved at this stage to still be alive and have sense but my first response this time was to see if dad was ok. He was being sick - so I knew he was fine. I also seem to remember being told it had been a success and that I was passing urine. The consultant who had planned the whole thing was there ensuring that things were working and hoping that I did not have an acute rejectin episode. I am not sure if they can do anything if this happens.
I remember being in quite a lot of pain in the bladder area (actually a lot of pain I think I am becoming a wimp) and having pain killers pumped into me. I was a bit sick but nothing to bad. I went in and out of sleep mode I remember coming back to the ward and being greated by everyone -mum etc and the doctors again. I also remember looking at dad and he was still being sick. He was experiencing the wonders of morphine - I am sure that you need to relax when you have painkillers and not fight the sensation. I was on a new type of iv pain killer that was brilliant. You did not fly round the room or your mind and kept some of your mental faculties.
The rest of that day was sleeping and drinking. I was also recieving liquid through a drip and had an antirejection medicine at some point during the day. Baxilimab. During the first few days I was pumped full of liquid, this is to get the kidney flushed and pumping properly. I think I passed about 4 litres of urine on the first day. That is probably more urine than I have passed in the past 2 years!!! I managed to come off the oxygen within a hour of arriving back from theatre. I hate being on oxygen - I like the feeling that I can breathe on my own.... I was attached to an oxygen monitor, heart monitor and blood pressure machine. I also had a drain coming out of the area where the kidney had come out of and had a catheter into my bladder up my private parts (this will become more relevant when I tell the story of day 3-4 later). I was in arc (acute renal care) and felt pretty good if not a bit sleepy, sore and buzzed up from pain killers. My observations and blood results were looking good. My creatine had halved, my phosphate had halved and my hb had dropped which would be expected after this kind of surgery.
Tuesday 20 November 2007
Day 17
So it is 17 days since the transplant. Things are looking positive at the moment. The doctors are keen to get past the 3 week stage as this is when they have seen the most rejection in the type of treatment I have had.
I am feeling good - my body is adjusting to having been sliced open again and I am gaining strength and energy. I am still taking it pretty easy and trying not to do to much. I think that by a month I will start to do some longer walks etc. I could do it now but think it is wise to let the body build up slowly.
I ahve just finished writing a document for the doctors at Southmead about a patients perspective on desensitization protocol. I felt this was important as it illustrated how good the team was and suggested some things that would make the process easier.
I still aim to do a full update on the last 2 weeks and a bit as I feel that anyone going through this treatment may find it interesting and informative.
I am feeling good - my body is adjusting to having been sliced open again and I am gaining strength and energy. I am still taking it pretty easy and trying not to do to much. I think that by a month I will start to do some longer walks etc. I could do it now but think it is wise to let the body build up slowly.
I ahve just finished writing a document for the doctors at Southmead about a patients perspective on desensitization protocol. I felt this was important as it illustrated how good the team was and suggested some things that would make the process easier.
I still aim to do a full update on the last 2 weeks and a bit as I feel that anyone going through this treatment may find it interesting and informative.
Wednesday 14 November 2007
Into hospital
I went into hospital on the 1st with dad (who was to give me the kidney) We arrived at about 3pm even though they advised 2pm. You always wait around for a bed and stuff to be done. I got a bed pretty quickly whilst dad had to wait. We were in ARC (Acute Renal Care) over the day I briefly saw the anethetist and surgeon. This was my 37th General Anesthetic so there was little to discuss.
Out obs were taken regularly - things were fine. It was a shame that they did not have both beds available - this just added to dads stress levels. If you have never been in hospital before you don't expect this type of thing.
The day of the operation to follow....
Out obs were taken regularly - things were fine. It was a shame that they did not have both beds available - this just added to dads stress levels. If you have never been in hospital before you don't expect this type of thing.
The day of the operation to follow....
General Update
For those that have been keeping track of my blog, sorry for not posting for the last couple of weeks. As most of you aware the transplant happened on the 2nd and I was released from hospital on Monday. I am still being closely monitored and as the doctor said am still in the amber alert zone...
Firstly I would like to thank everyone who has asked how things are going etc- it has been nice to hear that people are and were thinking of me. Thanks again.
One of the main aims of this blog is to try and record my thoughts and experiences for people who will go through the same treatment as myself. I think it is important that I take the time to document what happened to me when I was in hospital - I will try and do this is some detail. I warn you that some of it will be unpleasant reading but I think it is worth documenting.
It is still very early days for this transplant and rejection could take place at anytime - this of course keeps the stress levels pretty high.
Firstly I would like to thank everyone who has asked how things are going etc- it has been nice to hear that people are and were thinking of me. Thanks again.
One of the main aims of this blog is to try and record my thoughts and experiences for people who will go through the same treatment as myself. I think it is important that I take the time to document what happened to me when I was in hospital - I will try and do this is some detail. I warn you that some of it will be unpleasant reading but I think it is worth documenting.
It is still very early days for this transplant and rejection could take place at anytime - this of course keeps the stress levels pretty high.
Monday 12 November 2007
Out
I have been released from hospital today. Things at the moment are going well - but is really day by day process. Have had a tough couple of weeks which I aim to retel over the coming few weeks.
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