I had 3 units of blood last night on dialysis. Hb went from 6.5 to 9.1 which is good. Their was a lot of debate over the blood which was only solved by phoning my consultant directly.
Tomorrow I go into hospital for the transplant on Friday. I still have a cross match to get through and a screen to check that I don't have any bugs in my system. I am dialysing early so that they can get the bloods into the lab in the morning ready for the cross match.
Plasma today was fine although I arrived late having over slept. They have been brilliant at the blood unit - so professional and friendly. A great team
I am going to try and keep the blog updated from hospital. May have to ask mum to do some updating. I will probably in hospital for at least 2/3 weeks.
Wednesday 31 October 2007
Monday 29 October 2007
Visitors
I have been keeping my quarantine for the past 2 months and will continue to do it for perhaps 6 weeks after the transplant - this is to try and prevent picking up any bugs etc. I have thus decided that the visitors I would like to see at hospital are close family and relatives and medical staff.
This may seem harsh but I just want to try and be as careful as possible.
This may seem harsh but I just want to try and be as careful as possible.
Could be quite a week
Plasma was ok today - hb levels stayed the same at 6.5. In preperation for the transplant (probably on Friday) if everything stays on track, I am going to have 3 units of blood on dialysis tomorrow. My hb is dangerously low for the operation so the blood should raise that. I was going to have an iron infusion today - I went to the ward and the nurses started preping the dose etc and looking for veins. I have no veins and the few that I do have I treasure. As the nurse was looking my consultant walked in and we discussed the actually benefit and need for the iron. As I was having blood the next day - we decided that I did not need Iron so I walked out.
I followed him into the blood room to have a cross match blood test (taken from the fistula) This is needed for the blood tomorrow. I mentioned to the doctor that the previous times I have had blood I have almost gone into anaphlactic shock. I got bumps all over my body and struggled to breathe. The blood is now filtered to remove the white blood cells and thus one should not react to it.
They will do another cross match for the transplant on Thrusday to ensure that all is good.
Emotionally I feel stable and calm, I think this is because I have become so used to hospitals, tests, dialysis, plasma over the past 2 years and especially the past 2 months. I realise that this whole process has been an emotional rollercoaster for many people (perhaps I have been in the easiest position in that stuff is just done to me and I am at the centre of it - I also have very little choice). The doctors that are trying this process and have worked hard to get to this stage - I reckon must feel some both emotional and professional stress and of course my close family and friends have had to be part of the waiting game and the treatment time.
I think in future patients should be told that the process can take 3 months - this is what I was originally told but for some reason it was then suddenly publicsed that it would only take a month. In my opinion it is much better to tell patients and all involved the longer time frame. This reduces expectation and building up of "final" stress levels.
Something people need to understand is that when the operation (transplant) is done this is just the next stage of this process. There are sure to be more obstacles and challenges ahead both in the short term, medium term and long term. Hopefully the transplant will take hold and from there we will see how things stablise. I think it is important that people realise that a transplant organ always needs special care and medical attention. It is not a natural place for it but medicine is becoming better and organ survival is becoming better.
Of to watch the Simpsons on the tv....
I followed him into the blood room to have a cross match blood test (taken from the fistula) This is needed for the blood tomorrow. I mentioned to the doctor that the previous times I have had blood I have almost gone into anaphlactic shock. I got bumps all over my body and struggled to breathe. The blood is now filtered to remove the white blood cells and thus one should not react to it.
They will do another cross match for the transplant on Thrusday to ensure that all is good.
Emotionally I feel stable and calm, I think this is because I have become so used to hospitals, tests, dialysis, plasma over the past 2 years and especially the past 2 months. I realise that this whole process has been an emotional rollercoaster for many people (perhaps I have been in the easiest position in that stuff is just done to me and I am at the centre of it - I also have very little choice). The doctors that are trying this process and have worked hard to get to this stage - I reckon must feel some both emotional and professional stress and of course my close family and friends have had to be part of the waiting game and the treatment time.
I think in future patients should be told that the process can take 3 months - this is what I was originally told but for some reason it was then suddenly publicsed that it would only take a month. In my opinion it is much better to tell patients and all involved the longer time frame. This reduces expectation and building up of "final" stress levels.
Something people need to understand is that when the operation (transplant) is done this is just the next stage of this process. There are sure to be more obstacles and challenges ahead both in the short term, medium term and long term. Hopefully the transplant will take hold and from there we will see how things stablise. I think it is important that people realise that a transplant organ always needs special care and medical attention. It is not a natural place for it but medicine is becoming better and organ survival is becoming better.
Of to watch the Simpsons on the tv....
Thursday 25 October 2007
Am I god?
I noticed today that someone had found my blog with the search term "a couple of paragraphs that explain life" I repeated this exercise and typed it into google. The blog appears second - thus according to google (perhaps the current fountain of all knowledge) I have written a couple of paragraphs that explain life. O how I wish
Wednesday 24 October 2007
mini cheddars, tea and clapton
I am sitting here drinking tea, eating mini cheddars and listening to Eric Clapton. I have an urge to eat mini cheddars - I used to get this urge when I was young and ill. Weird. Perhaps it is the bicarbonate in them?
I read something interesting the other day - if you have a desire to chew or such ice there is a change that you need more iron and could be anaemic. This must be some sort of evolutionary thing - iron from hard objects?
I had a letter from a journalist today who noticed the article in the evening post. She wants to write an article on my experiences and try and get it submitted to the main uk papers. I am a bit hesitant - not sure I want my life story displayed on the papers. Might land up being persuade by the paparrazzi :-) I will probably contact her and see what she is thinking of doing.
I think I know what it is like being a caged animal. It is almost ten weeks since I have been in quarantine. I have basically not been into shops or into groups of people. My life is to go to hospital and then back to the flat. Sometimes on a Sat I visit my parents or brother. We got stuck in a traffic jam last Friday going to my Brothers - for about 1.5 hours. It is the first time I actually enjoyed it - just looking at society and peoples emotions. A caged animal must get pretty bored - although perhaps there brains don't think the same as ours. But I am sure they are conditioned to be moving about and exploring.
I am finding that my concentration span is declining - I find it hard to focus on something for extended periods of time. This I am sure is from low hb - basically not getting enough oxygen to the brain - when you think your brain needs more oxygen and if you have low hb it requires energy to do this and you get tired.
Nothing else to report..
I read something interesting the other day - if you have a desire to chew or such ice there is a change that you need more iron and could be anaemic. This must be some sort of evolutionary thing - iron from hard objects?
I had a letter from a journalist today who noticed the article in the evening post. She wants to write an article on my experiences and try and get it submitted to the main uk papers. I am a bit hesitant - not sure I want my life story displayed on the papers. Might land up being persuade by the paparrazzi :-) I will probably contact her and see what she is thinking of doing.
I think I know what it is like being a caged animal. It is almost ten weeks since I have been in quarantine. I have basically not been into shops or into groups of people. My life is to go to hospital and then back to the flat. Sometimes on a Sat I visit my parents or brother. We got stuck in a traffic jam last Friday going to my Brothers - for about 1.5 hours. It is the first time I actually enjoyed it - just looking at society and peoples emotions. A caged animal must get pretty bored - although perhaps there brains don't think the same as ours. But I am sure they are conditioned to be moving about and exploring.
I am finding that my concentration span is declining - I find it hard to focus on something for extended periods of time. This I am sure is from low hb - basically not getting enough oxygen to the brain - when you think your brain needs more oxygen and if you have low hb it requires energy to do this and you get tired.
Nothing else to report..
Tuesday 23 October 2007
Sometimes the NHS rocks
Dialysis was fine today. Arrived early to try and catch up with consultant but he was not around. So went and had a meal in the canteen. The dialysis unit was busy - there was one elderly gentlemen who gets confused on dialysis and shouts out " Help me" and other weird stuff.
I feel sorry for him but it did make me chuckle. The staff tell him he has x minutes left and he then asks How much to get free? If an inspector walked into the unit and this guy was shouting it would look like the staff did not care but quite the reverse is actually happening. Don't immediately judge all situations.
I am anaemic, my named nurse, spoke to me about it and also about Iron. She managed to track down a doctor and we had a discussion about getting an extra dose. The junior doctor was excellent - he actually appeared interested and listened asking quesyions about my health and any side effects from the anemia. He prescribed the Iron and I also had eypo.
My nurse also said that the doctors had requested hb levels every Tuesday, this is obviously a doctor reviewing all the results each month. I decided that I would not have blood done today as I had it done yesterday and my hb levels were done then. Don't waste blood.... My named nurse agreed.
When other people go through this treatment I think they need to be careful about hb levels.
No news on cross matches for this week. I am listening to a cd that my mates made me - it rocks also.
I feel sorry for him but it did make me chuckle. The staff tell him he has x minutes left and he then asks How much to get free? If an inspector walked into the unit and this guy was shouting it would look like the staff did not care but quite the reverse is actually happening. Don't immediately judge all situations.
I am anaemic, my named nurse, spoke to me about it and also about Iron. She managed to track down a doctor and we had a discussion about getting an extra dose. The junior doctor was excellent - he actually appeared interested and listened asking quesyions about my health and any side effects from the anemia. He prescribed the Iron and I also had eypo.
My nurse also said that the doctors had requested hb levels every Tuesday, this is obviously a doctor reviewing all the results each month. I decided that I would not have blood done today as I had it done yesterday and my hb levels were done then. Don't waste blood.... My named nurse agreed.
When other people go through this treatment I think they need to be careful about hb levels.
No news on cross matches for this week. I am listening to a cd that my mates made me - it rocks also.
Press
Anyone who is interested here is the article in the local paper following on from the BBC Radio Bristol interview.
http://www.thisisbristol.co.uk/
http://www.thisisbristol.co.uk/
Hospital infections c.diff and mrsa
Over the past few months hospital infections have become been highlighted in the press. For me these infections are of concern due to my immunity being so depleted from all the treatment I am getting.
Both mrsa and c diff occur in nature and tend to infect people who are ill or old. It is worth noting that the alcohol spray/gel that you get on the doors of hospitals does not kill c diff. The only way to get rid off it is to wash your hands with soap and water and ensure that clothing is clean.
I have a number of possible ideas to why these infections are increasing in number. The first is that the hospitals and public health are detecting the infections and classifying them this obviosuly increases them.
The second is that the pressure to reduce waiting times means that hospitals are running at capacity and bed turn around times are high - these reduces time for cleaning and airing of wards. It also means that more people are passing through the wards.
The third I believe comes down to staffing changes. The different grades of nurses and cleaners is, in my opinion, causing an interesting problem. Within the nursing grading there is a hierarchy that has been there since nursing started. This hierarchy is now being put in an inbalance. Here is my postulation, the cleaning staff are often low paid, low skilled workers who are doing a very important job but are not allowed the time to do the job. They come in are supervised to get the job done and signed off and then they go to another part of the hospital.
Many of the Health Care Assistants who are also low paid and low skilled tend to have more contact with the patients. They basically are supposed to do the job of ensuring the patient is fed, clean, bathed and toilet duties.
The nursing staff are responsible for the patient day to day welfare on the ward. Many of the staff nurses have moved from abroad and in my experience do an excellent job. Interestingly many of the hca, in my opinion, have been born and educated in this country. I believe that the hca (untrained nursing staff) are part of the weak link in the control of infection.
I also believe that they needs to better training and audits of senior nursing staff (sisters and senior staff nurses). In my experience the majority are truly excellent but you get a few who are useless and a hinderence to both there staff and the patiens. This is a big problem when you are dealing with peoples lives.
Gordon Browns "Deep clean every hospital" will not help in my opinion. You need to go deeper than that you need to give the control of hospitals back to the doctors and consultants who have a far better understanding and medical training of what is truly going on and can also see who and where the weak links are. You then need to empower these doctors to be able to make decisions.
Perhaps the biggest problem faced is that the population is ageing (80% of c diff infections occur in people over 65). When you are young and have to share wards with people who are over 70 you feel at risk. I cant see a way round this unless you start dividing wards into age groups. Perhaps that is an idea??
Both mrsa and c diff occur in nature and tend to infect people who are ill or old. It is worth noting that the alcohol spray/gel that you get on the doors of hospitals does not kill c diff. The only way to get rid off it is to wash your hands with soap and water and ensure that clothing is clean.
I have a number of possible ideas to why these infections are increasing in number. The first is that the hospitals and public health are detecting the infections and classifying them this obviosuly increases them.
The second is that the pressure to reduce waiting times means that hospitals are running at capacity and bed turn around times are high - these reduces time for cleaning and airing of wards. It also means that more people are passing through the wards.
The third I believe comes down to staffing changes. The different grades of nurses and cleaners is, in my opinion, causing an interesting problem. Within the nursing grading there is a hierarchy that has been there since nursing started. This hierarchy is now being put in an inbalance. Here is my postulation, the cleaning staff are often low paid, low skilled workers who are doing a very important job but are not allowed the time to do the job. They come in are supervised to get the job done and signed off and then they go to another part of the hospital.
Many of the Health Care Assistants who are also low paid and low skilled tend to have more contact with the patients. They basically are supposed to do the job of ensuring the patient is fed, clean, bathed and toilet duties.
The nursing staff are responsible for the patient day to day welfare on the ward. Many of the staff nurses have moved from abroad and in my experience do an excellent job. Interestingly many of the hca, in my opinion, have been born and educated in this country. I believe that the hca (untrained nursing staff) are part of the weak link in the control of infection.
I also believe that they needs to better training and audits of senior nursing staff (sisters and senior staff nurses). In my experience the majority are truly excellent but you get a few who are useless and a hinderence to both there staff and the patiens. This is a big problem when you are dealing with peoples lives.
Gordon Browns "Deep clean every hospital" will not help in my opinion. You need to go deeper than that you need to give the control of hospitals back to the doctors and consultants who have a far better understanding and medical training of what is truly going on and can also see who and where the weak links are. You then need to empower these doctors to be able to make decisions.
Perhaps the biggest problem faced is that the population is ageing (80% of c diff infections occur in people over 65). When you are young and have to share wards with people who are over 70 you feel at risk. I cant see a way round this unless you start dividing wards into age groups. Perhaps that is an idea??
Monday 22 October 2007
Search
Some one found this blog by doing the following search
1957, dr cp richter rats water hope
I find that interesting. It is the article that I referred to in the blog
1957, dr cp richter rats water hope
I find that interesting. It is the article that I referred to in the blog
6.5
Went to Woking for a couple of days this Weekend. Well left after Friday plasma and returned for dialysis on Sunday. Had my birthday at my brothers and saw my 2 month old niece who is great. It was a nice couple of days.
Plasma and dialysis have been ok - my hb has continued to drop 6.5 today. I would have had a blood transfusion by now if they were not worried about the antibodies etc. Every time I think the hb has got better the lower it goes!
Waiting for this weeks cross match results - it is now my 8 week. I have had a total of about 60 litres of plasma removed over this time and replaced and have been on machines for about 140 hours over the last 7/8 weeks. It is like having a full time job with one day a week off when you feel to tired to do too much anyway. Hopefully it will be all worth it in the end.
I was told that I was in the evening post last Saturday - hope to get a copy off that soon
Plasma and dialysis have been ok - my hb has continued to drop 6.5 today. I would have had a blood transfusion by now if they were not worried about the antibodies etc. Every time I think the hb has got better the lower it goes!
Waiting for this weeks cross match results - it is now my 8 week. I have had a total of about 60 litres of plasma removed over this time and replaced and have been on machines for about 140 hours over the last 7/8 weeks. It is like having a full time job with one day a week off when you feel to tired to do too much anyway. Hopefully it will be all worth it in the end.
I was told that I was in the evening post last Saturday - hope to get a copy off that soon
Tuesday 16 October 2007
target weight
Just had dialysis. I think I am losing weight (no real surprise!) My target weight is now back to 65.5kg from 66.5kg. Dialysis was fine and was home by 11pm
Felt better today - still tired but not as weird. I did not feel ill yesterday just weird. See how it goes tomorrow.
I may do a section on c. diff and mrsa tomorrow and my thoughts on them
Felt better today - still tired but not as weird. I did not feel ill yesterday just weird. See how it goes tomorrow.
I may do a section on c. diff and mrsa tomorrow and my thoughts on them
Monday 15 October 2007
1 more week
Not to much to say. Had bloods done today on plasma. hb is 7.1 this is another drop of about .3 but that is less than normal weekly drops of 1. So thats ok - if I was a normal person and not having this treatment they would have probably have given me a blood transfusion.
I had my picture taken by the evening post who are doing some sort of article on transplantation.
Felt weird after plasma - had to go to bed for about 3 hours and sleep, but felt better after that. Can't really explain the feeling except that it was weird.
Still waiting for more of an idea of what th antibodies in my blood are and how they are going to move forward.
Will try and write more tomorrow.
I had my picture taken by the evening post who are doing some sort of article on transplantation.
Felt weird after plasma - had to go to bed for about 3 hours and sleep, but felt better after that. Can't really explain the feeling except that it was weird.
Still waiting for more of an idea of what th antibodies in my blood are and how they are going to move forward.
Will try and write more tomorrow.
Wednesday 10 October 2007
Cross matching, plasma and press
Quite a bit to update. Firstly I am feeling tired - due to low hb and am finding if I walk quickly I get out of breath. This is not due to some sudden loss of fitness, it is due to low hb. I basically can't get enough oxygen to my body and thus it gets tired and breathless.
The cross match results showed little change - the original antibody seems to be controlled now. But we have these wierd antibodies that are giving positive cross match results. Hopefully roche will come back with some good news.
Press. On plasma this morning I was phoned by one of the transplant coordinators to ask if I would go on the radio. An hour later I was live on BBC Bristol Radio taking part in a discussion about transplants and there effects. I now have the evening post wanting to do an article on me and transplant - appearing next week- I guess. I am always a bit reserved about the press but think that this is a good cause and that there heart is in the right place. We will see.
The cross match results showed little change - the original antibody seems to be controlled now. But we have these wierd antibodies that are giving positive cross match results. Hopefully roche will come back with some good news.
Press. On plasma this morning I was phoned by one of the transplant coordinators to ask if I would go on the radio. An hour later I was live on BBC Bristol Radio taking part in a discussion about transplants and there effects. I now have the evening post wanting to do an article on me and transplant - appearing next week- I guess. I am always a bit reserved about the press but think that this is a good cause and that there heart is in the right place. We will see.
Monday 8 October 2007
weekend
Had a good weekend. Plasma was fine on Friday morning. Drove down to my parents after and had sleep in the afternoon. My brother and sister in law drove down from Woking with my 2 month old niece.
On Saturday we had a good day going to Lyme Regis and playing mini golf (outdoors so did not come to close to other people and when we had a ice cream I did not eat the cone because my hands had been touching the ball, club and mini golf course and I had not washed my hands.) we followed this with England and France winning the Rugby. On Sunday drove back to Bristol for dialysis. My niece is lovely - growing fast and is lucky to have such good parents.
Dialysis was fine although I had a badheadache afterwards - thought this was from being dry but not so sure now. Have increased target weight by 1kg but this did not seem to help?
Plasma this morning was fine. Although my hb has dropped to 7.3 - I thought it has stabalised. This is now getting low. The doctor has upped my eypo but this takes at least a month to start working. They took cross matching bloods, the doctor did not arrive to collect them so I took them directly to the consultant. I think the blood unit were amazed that I was phoning my consultant on his mobile. But that seems to work best all round. As things are quite complicated with all the procedures at the mo.
The next potential date for transplant seems to be the 2nd Nov but this is not set in stone. If the treatment works before then I would guess that they will do the transplant sooner than later - helping to reduce the time I am being immunosuppressed.
On Saturday we had a good day going to Lyme Regis and playing mini golf (outdoors so did not come to close to other people and when we had a ice cream I did not eat the cone because my hands had been touching the ball, club and mini golf course and I had not washed my hands.) we followed this with England and France winning the Rugby. On Sunday drove back to Bristol for dialysis. My niece is lovely - growing fast and is lucky to have such good parents.
Dialysis was fine although I had a badheadache afterwards - thought this was from being dry but not so sure now. Have increased target weight by 1kg but this did not seem to help?
Plasma this morning was fine. Although my hb has dropped to 7.3 - I thought it has stabalised. This is now getting low. The doctor has upped my eypo but this takes at least a month to start working. They took cross matching bloods, the doctor did not arrive to collect them so I took them directly to the consultant. I think the blood unit were amazed that I was phoning my consultant on his mobile. But that seems to work best all round. As things are quite complicated with all the procedures at the mo.
The next potential date for transplant seems to be the 2nd Nov but this is not set in stone. If the treatment works before then I would guess that they will do the transplant sooner than later - helping to reduce the time I am being immunosuppressed.
Friday 5 October 2007
Autobiography - in a paragraph
A couple of people have asked me to provide a couple of paragraphs providing a brief history of my medical treatment and where I stand at the moment. So here goes...
I was born in South Africa and was diagnosed with kidney problems at the age of 6 months (at a brilliant hospital called The red cross hospital Cape Town). I remember going for tests and procedures. During my life I have always thrown up complications and had to have things done. I had my tonsells and adenoids taken out in the first few years of my life and suffered from chest problems.
At 7 we moved to the UK and I transferred to Great Ormond Street for a brief while and then to Bristol. Quite soon after this my condition began to deteriate and I had to go onto dialysis. Dialysis consisted of having a tube put into your stomach and draining liquid in and out. This removed toxins and liquid through osmosis.
My mum decided to give me a kidney - this was quite early days for transplants and for live donors. I received the transplant, it worked brillianty to begin with. I remember drinking fruit juice - something that I had not been able to do for over 5 years before hand. The kidney rejected about 6 months after the transplant and I went back onto dialysis.
Dialysis during those days were quite different. Firstly epo and haemoglobin substitute was not available. I was the first child in the country to be given it in about 1986. This drug was a revolution to us dialysis patient and continues to be. It provides energy basically without energy your body and brain suffers.
Unfortunately my dialysis began to deteriote during my first year at senior school. I went in for an operation to replace the tube which I expected to spend a week in hospital and came out ten months later with a new kidney having been very close to death. Basically my stomach (peritinium?) had become so thick fluid could not pass through it effectively. They tried a number of times to fix this but with no success. I had so many toxins in my body that I had no appetite and was fed through the nose during the evening. At one point I had a drip in 3 of my limbs and a line nto my heart through my shoulder. I was on haemodialysis at this stage - they did not do fistulas on children in those days and the line was the only solution. I had a temperature for 6 months that appeared at about 4pm in the afternoon and lasted all night. I went through about every procedure you can think of to find this temp but it was never found.It dissapeared after the transplant.
As I was getting sicker and sicker I was placed on the European Emergency transplant list and was top of the list. Luckily a transplant came - it was crossed matched and took 2 weeks to do anything but then started and got revved up. Over the next few weeks I had all the tubes out and went home - with lots of blood tests to check that the kidney was behaving.
During my transplant days I lived life to the full (I did not just say it). I played an active role in school life , was school hockey captain, school tennis champion, spent much of my life camping and doing teenage things. I played hockey for a mens league team. I took up skiing and loved it with much competition between my brother we became pretty good. I did ok at school and went onto university at Bristol Uni to study Geology and Biology. I have also studied a MSc IT and and PGCE in Science.
Sadly (but transplants don't always last forever) the transplant failed and I am back on dialysis. I have been on dialysis for almost 2 years and undergoing treatment for my 3rd transplant.
The 3rd transplant treatment is complicated because I have antibodies that react with the donor. They are trying a new technique on me that requires heavy immunosuppression and plasmapherisis. The idea is to stop my body creating antibodies and to remove any that are in the blood through plasmaphersis. Plasma bascially removes 60% of your blood plasma 3 times a week. I also dialyse 3 times a week at the moment as well to keep the toxins and liquid out of the blood.
The treatment at the moment is showing some odd results and headscratching. But I hope (we hope) that this will be solved and the transplant will be done completing my 35 operation and the next stage of my life.
I hope this helps to explain were I am coming from and give you a bit of perspective about the blog.
I was born in South Africa and was diagnosed with kidney problems at the age of 6 months (at a brilliant hospital called The red cross hospital Cape Town). I remember going for tests and procedures. During my life I have always thrown up complications and had to have things done. I had my tonsells and adenoids taken out in the first few years of my life and suffered from chest problems.
At 7 we moved to the UK and I transferred to Great Ormond Street for a brief while and then to Bristol. Quite soon after this my condition began to deteriate and I had to go onto dialysis. Dialysis consisted of having a tube put into your stomach and draining liquid in and out. This removed toxins and liquid through osmosis.
My mum decided to give me a kidney - this was quite early days for transplants and for live donors. I received the transplant, it worked brillianty to begin with. I remember drinking fruit juice - something that I had not been able to do for over 5 years before hand. The kidney rejected about 6 months after the transplant and I went back onto dialysis.
Dialysis during those days were quite different. Firstly epo and haemoglobin substitute was not available. I was the first child in the country to be given it in about 1986. This drug was a revolution to us dialysis patient and continues to be. It provides energy basically without energy your body and brain suffers.
Unfortunately my dialysis began to deteriote during my first year at senior school. I went in for an operation to replace the tube which I expected to spend a week in hospital and came out ten months later with a new kidney having been very close to death. Basically my stomach (peritinium?) had become so thick fluid could not pass through it effectively. They tried a number of times to fix this but with no success. I had so many toxins in my body that I had no appetite and was fed through the nose during the evening. At one point I had a drip in 3 of my limbs and a line nto my heart through my shoulder. I was on haemodialysis at this stage - they did not do fistulas on children in those days and the line was the only solution. I had a temperature for 6 months that appeared at about 4pm in the afternoon and lasted all night. I went through about every procedure you can think of to find this temp but it was never found.It dissapeared after the transplant.
As I was getting sicker and sicker I was placed on the European Emergency transplant list and was top of the list. Luckily a transplant came - it was crossed matched and took 2 weeks to do anything but then started and got revved up. Over the next few weeks I had all the tubes out and went home - with lots of blood tests to check that the kidney was behaving.
During my transplant days I lived life to the full (I did not just say it). I played an active role in school life , was school hockey captain, school tennis champion, spent much of my life camping and doing teenage things. I played hockey for a mens league team. I took up skiing and loved it with much competition between my brother we became pretty good. I did ok at school and went onto university at Bristol Uni to study Geology and Biology. I have also studied a MSc IT and and PGCE in Science.
Sadly (but transplants don't always last forever) the transplant failed and I am back on dialysis. I have been on dialysis for almost 2 years and undergoing treatment for my 3rd transplant.
The 3rd transplant treatment is complicated because I have antibodies that react with the donor. They are trying a new technique on me that requires heavy immunosuppression and plasmapherisis. The idea is to stop my body creating antibodies and to remove any that are in the blood through plasmaphersis. Plasma bascially removes 60% of your blood plasma 3 times a week. I also dialyse 3 times a week at the moment as well to keep the toxins and liquid out of the blood.
The treatment at the moment is showing some odd results and headscratching. But I hope (we hope) that this will be solved and the transplant will be done completing my 35 operation and the next stage of my life.
I hope this helps to explain were I am coming from and give you a bit of perspective about the blog.
Wednesday 3 October 2007
Orienteering
Finished writing an article for Compass sport - the national orienteering magazine. I will publish the article here once it has been published in the magazine and on the web. I was delighted to write an article for me as orienteering (which I discovered last year) has provided me with the incentive to get fit, get tougher physically and to get out and about.
It is a good sport for a number of reasons and particulary good for kidney dialysis patient (I believe) because it offer the following
1. Go at your own speed but in a competition environment
2. Get out and meet new people
3. See you fitness and map reading improve.
4. Not high impact on the arms (fistula consideration) unless you fall!
5. Gets your heart rate up
6. Makes you sweat which removes both liquids and toxins. (this makes me feel so much better - it is like an extra dialysis)
I could go on but I think you get the point. To find out more about orienteering visit http://www.compasssport.co.uk/
It is a good sport for a number of reasons and particulary good for kidney dialysis patient (I believe) because it offer the following
1. Go at your own speed but in a competition environment
2. Get out and meet new people
3. See you fitness and map reading improve.
4. Not high impact on the arms (fistula consideration) unless you fall!
5. Gets your heart rate up
6. Makes you sweat which removes both liquids and toxins. (this makes me feel so much better - it is like an extra dialysis)
I could go on but I think you get the point. To find out more about orienteering visit http://www.compasssport.co.uk/
2nd post for the day.
The fund raising is going great. Over £2000 including tax rebate. Also received this email from Kidney Research
"Kidney Research UK are very pleased to benefit from the support of Ian Purchase, who is asking friends and family to help him raise his amazing target of £1,000,000. Kidney Research UK would encourage anyone to support Ian in his aim of raising this amount of money and thereby help us fund vital research into kidney disease. The lives of over three million people in the UK are under threat from chronic kidney disease, a devastating and debilitating condition that can strike anyone at any time. It is because of the generous support of the public and Individuals such as Ian that we are able to fund life-saving research and offer a brighter future to kidney patients."
"Kidney Research UK are very pleased to benefit from the support of Ian Purchase, who is asking friends and family to help him raise his amazing target of £1,000,000. Kidney Research UK would encourage anyone to support Ian in his aim of raising this amount of money and thereby help us fund vital research into kidney disease. The lives of over three million people in the UK are under threat from chronic kidney disease, a devastating and debilitating condition that can strike anyone at any time. It is because of the generous support of the public and Individuals such as Ian that we are able to fund life-saving research and offer a brighter future to kidney patients."
Plasma and Iron
Back from Plasma - feel ok today imagine that I will feel tired later and need a sleep. I actually enjoyed plasma today - it is quite boring sitting at home alone and not being able to go out because of quarantine. The staff at the blood service are happy people who can take a joke and joke back. They are also very caring. It is slightly different to dialysis in the fact that plasma is one on one nursing whilst dialysis is not. This means that you talk and get to know the plasma nurses better and they have a better idea of how you are feeling.
I had iron for the first time in a month last night- there had been some confusion and it had been missed for a while. My iron had dropped to a low level. Iron is important as it helps hb carry oxygen around the body. I actually feel a lot better today with a bit more energy and think this may be down to iron. It could also be all in the mind.
I have not heard anything about the cross match tests from monday- so I presume treatment carries on as is.
I am feeling ok both physically and mentally which is good, the donations are brilliant and it gives me something to do.
I had iron for the first time in a month last night- there had been some confusion and it had been missed for a while. My iron had dropped to a low level. Iron is important as it helps hb carry oxygen around the body. I actually feel a lot better today with a bit more energy and think this may be down to iron. It could also be all in the mind.
I have not heard anything about the cross match tests from monday- so I presume treatment carries on as is.
I am feeling ok both physically and mentally which is good, the donations are brilliant and it gives me something to do.
Monday 1 October 2007
Hope
I found this quote in a book on Lance Armstrong - Tour de Force. I think it is fascinating
"In 1957, Dr. c.p Richter of the Psychobiological Laboratory of John Hopkins Medical School carried out an experiment that attempted to measure the motivational effect of hope. The experiments involved placing rats in cylinders of water thirty inches deep and eight inches wide. After a short time, half of the rats were momentarily rescued - lifter out of the cylinder for a few seconds, then put back into the water. The other half were not. The group that was given hope swam for more than three days. The other rats drowned almost immediately."
I think that we can learn and understand a lot from this. Many medical patients look for hope through science and research such as Kidney Research. If you want to add hope visit www.justgiving.com/amillionthanks
"In 1957, Dr. c.p Richter of the Psychobiological Laboratory of John Hopkins Medical School carried out an experiment that attempted to measure the motivational effect of hope. The experiments involved placing rats in cylinders of water thirty inches deep and eight inches wide. After a short time, half of the rats were momentarily rescued - lifter out of the cylinder for a few seconds, then put back into the water. The other half were not. The group that was given hope swam for more than three days. The other rats drowned almost immediately."
I think that we can learn and understand a lot from this. Many medical patients look for hope through science and research such as Kidney Research. If you want to add hope visit www.justgiving.com/amillionthanks
Monday
I was up early today - had to be at plasma for 8.30 so that they could fit another patient in after me. Had a bad headache after dialysis last night - not sure if I am to dry or perhaps linked to hb. Woke up and it had gone.
Had about 9 tubes of blood done for the cross matching (it's that time of week.) Apart from that Plasma went fine - at the end during rinse back I tasted the citrate and also felt flushed interestingly my temp want from 36.5 to 37.1 over half an hour. I am sure I had a minor reaction.
Had an email from the Doc explaining his latest thinking and how they are trying to prove things. It will be interesting what the results show today.
The fundraising is going well. We have reached over a £1000 that is brilliant- a massive thank you to everyone who has donated, told people about the idea or both. The idea also seems to be working in which friends of friends are spreading the word. This is so good - it makes me excited.
If you are reading this blog for the first time. Visit www.justgiving.com/amillionthanks to find out about our fundraising effort.
The popularity of this blog has grown rapidly over the past week which makes it feel more worthwhile recording my thoughts and experiences.
Will post more later. If you any questions or comments please leave them below.
Had about 9 tubes of blood done for the cross matching (it's that time of week.) Apart from that Plasma went fine - at the end during rinse back I tasted the citrate and also felt flushed interestingly my temp want from 36.5 to 37.1 over half an hour. I am sure I had a minor reaction.
Had an email from the Doc explaining his latest thinking and how they are trying to prove things. It will be interesting what the results show today.
The fundraising is going well. We have reached over a £1000 that is brilliant- a massive thank you to everyone who has donated, told people about the idea or both. The idea also seems to be working in which friends of friends are spreading the word. This is so good - it makes me excited.
If you are reading this blog for the first time. Visit www.justgiving.com/amillionthanks to find out about our fundraising effort.
The popularity of this blog has grown rapidly over the past week which makes it feel more worthwhile recording my thoughts and experiences.
Will post more later. If you any questions or comments please leave them below.
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