Yesterday I did my first serious bit of exercise since the transplant (just over 5 weeks ago). I walked about 4 miles in just over an hour - everything seemed fine and I felt good. I could feel that I had not done much for the past 3 months.
My body and especailly lower back - hip region had some minor pain and stiffness as I walked but nothing to serious.
Today when I woke up I was a little bit stiff in the lower back and left hip region but that has past. I am sure this is from the surgery and the scar which runs up my right hand side of the stomach from my pelvic region. My aim is to exercise in small amounts building up strength and increase amount and intensity as I go.
I am running for kidney research
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Wednesday, 12 December 2007
Thursday, 22 November 2007
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, 25 September 2007
Response
Over the past few weeks many people have commented on how can I stay positive - it must be hard. Do you not get depressed?
My response is this. I have had kidney problems my whole life and thus firstly know no difference. Since I was a little child it has been bred into my to be positive and to get on with it. I have seen people in much worse scenarios than me and I see them each time I go to hospital - this makes me feel stronger. I have always had good family support and the mind that has enabled me to switch off negative feelings - negative feelings I believe spiral down and down. In my opinion they are bad for health.
When I was a child I was in hospital for a long time and spent many hours alone on a bed with numerous machines attached to me. I was close to dying - a number of kids died around me. I came through that with a very clear memory (probably a self defence memory) what is the worst that can to yourself? You die. I am not sure that this is correct now - worst things can happen and perhaps death is the ultimate escape?
Before people start wondering I am not thinking that I am going to die soon. I am just trying to explain my feelings to people who ask the question? Do you not get depressed and down?
Ps if anyone who works with or on Rituximab is reading this I would be very interested in talking with you. Please leave a comment and I will get back to you. It regards my current treatment
My response is this. I have had kidney problems my whole life and thus firstly know no difference. Since I was a little child it has been bred into my to be positive and to get on with it. I have seen people in much worse scenarios than me and I see them each time I go to hospital - this makes me feel stronger. I have always had good family support and the mind that has enabled me to switch off negative feelings - negative feelings I believe spiral down and down. In my opinion they are bad for health.
When I was a child I was in hospital for a long time and spent many hours alone on a bed with numerous machines attached to me. I was close to dying - a number of kids died around me. I came through that with a very clear memory (probably a self defence memory) what is the worst that can to yourself? You die. I am not sure that this is correct now - worst things can happen and perhaps death is the ultimate escape?
Before people start wondering I am not thinking that I am going to die soon. I am just trying to explain my feelings to people who ask the question? Do you not get depressed and down?
Ps if anyone who works with or on Rituximab is reading this I would be very interested in talking with you. Please leave a comment and I will get back to you. It regards my current treatment
Weekend update
This weekend was good - I felt a lot better and managed to eat more and relax a bit. I am still pretty tired.
Went to dialysis on Sunday morning and managed 2 out of the 4 hours. When all the alarms went off in the unit on the machines. Someone had been doing maintenance on the water supply and the water went off. Basically when this happens the machines don't like it. After 20 mins you have to come off as the blood starts to get to cold.
I was taken off and asked if I wanted to stay until it was fixed. We had no idea how long that would take. I decided to come off - within 5 minutes it had been fixed. This basically meant I was 2 hours short of dialysis. At this stage I did not know if the transplant was going to happen on Friday or not so I said I would do 2 hours on Monday followed by 4 on Tuesday.
Plasma went fine on Monday and all the cross match bloods were done, at this point the indications of a transplant on Friday were good. I felt not so confident over this.
Dialysis was fine - 2 hours. My fistula is looking well used now. Got the nurse (who is great at needling my fistula to use a couple of new sites. That was fine. My hb was 9.6 - this is getting low. Speaking to the doctor we are hoping that is has now stabilized.
Went to dialysis on Sunday morning and managed 2 out of the 4 hours. When all the alarms went off in the unit on the machines. Someone had been doing maintenance on the water supply and the water went off. Basically when this happens the machines don't like it. After 20 mins you have to come off as the blood starts to get to cold.
I was taken off and asked if I wanted to stay until it was fixed. We had no idea how long that would take. I decided to come off - within 5 minutes it had been fixed. This basically meant I was 2 hours short of dialysis. At this stage I did not know if the transplant was going to happen on Friday or not so I said I would do 2 hours on Monday followed by 4 on Tuesday.
Plasma went fine on Monday and all the cross match bloods were done, at this point the indications of a transplant on Friday were good. I felt not so confident over this.
Dialysis was fine - 2 hours. My fistula is looking well used now. Got the nurse (who is great at needling my fistula to use a couple of new sites. That was fine. My hb was 9.6 - this is getting low. Speaking to the doctor we are hoping that is has now stabilized.
Delayed
Got quite a bit to write about. Firstly just heard from the doctor that the transplant will not happen on Friday, this did not come as a surprise to me. Apparently I have managed to create some new antibodies that are more aggressive than the ones they were trying to get rid off. They are unsure of how these have appeared and are asking experts around the world about what to do.
I am still confident that they will sort it out and that they will be able to do the transplant at some point. Perhaps next month.
I will write more soon
I am still confident that they will sort it out and that they will be able to do the transplant at some point. Perhaps next month.
I will write more soon
Friday, 21 September 2007
Next week
I am still pretty tired - plasma day is always knackering. Was told today that I don't need my bladder inflated before the transplant.
They do the next cross match on Monday and decide on Tuesday if my antibodies have been removed yet. I don't think they had been removed last Monday. I am thinking that they probably will be around this Monday. My body is normally quite a fighter, it often takes more time and drugs to do stuff to my body than is the norm. Their is a chance that they will not be able to remove the antibodies and hence not be able to do the transplant.
My hb was similar to Wednesday result so it seems that it has stabilised. Hopefully it should start lifting soon.
It also appears that my blood vessels are not as good as I was led to believe. I have narrowing of a vein near my current transplant (rejected) which means they are probably going to leave that one in place and use the right side of my stomach.
Transplanted kidneys normally get put in the front of your body just above your pelvis. As I have had two before their is a chance they will have to put this one higher up near the stomach.
They do the next cross match on Monday and decide on Tuesday if my antibodies have been removed yet. I don't think they had been removed last Monday. I am thinking that they probably will be around this Monday. My body is normally quite a fighter, it often takes more time and drugs to do stuff to my body than is the norm. Their is a chance that they will not be able to remove the antibodies and hence not be able to do the transplant.
My hb was similar to Wednesday result so it seems that it has stabilised. Hopefully it should start lifting soon.
It also appears that my blood vessels are not as good as I was led to believe. I have narrowing of a vein near my current transplant (rejected) which means they are probably going to leave that one in place and use the right side of my stomach.
Transplanted kidneys normally get put in the front of your body just above your pelvis. As I have had two before their is a chance they will have to put this one higher up near the stomach.
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