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.
Monday, 8 October 2007
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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