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.
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What a fantastic summary from a patient perspective. You haven't even mentioned the restrictions on your diet. Chocolate, bananas, dried fruit & all the Christmas yummies. Share the diet with those that don't know it, not many will realise! Keep up the good work. Hugs, Di xx
Ian, I just read your paragraph on HOPE. Wow! That is like those that survived the worst prisoner of war camp did, those that survived focused on life beyond the nightmare they were in, they focused on their families & what they would do when they escaped or were free. By doing this they psycologically overcame daily torture. You are a fine example of focusing on the future. Maybe there is a book on this that you could write, I'd love the first signed copy please! Keep up the good work. Hugs Di xx
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