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.
Showing posts with label immunity. Show all posts
Showing posts with label immunity. Show all posts
Monday, 8 October 2007
Thursday, 27 September 2007
Update on my progress
We have managed to make contact with a number of people at Roche who make one of the drugs I took at the beginning of the desensitization. This basically got rid of all my antibodies but has subsequently thrown up some further unusual results.
Lets hope that the people at Roche and my doctors can work it out between them and overcome the complications.
Lets hope that the people at Roche and my doctors can work it out between them and overcome the complications.
Wednesday, 5 September 2007
Bye Bye immunity
I had a quick look at todays blood results and it would seem that the treatment and infusion on Monday has had an effect.
My lymphocytes have dropped from 3 units to 1.6 units. That basically means that my internal armies have halved. This I think is what the doctors are hoping for - these little things are the things that cause rejection.
My phosphate has risen back up but that is not a surprise as I have been eating calcium foods and liquids and these contain phosphate. My haemoglobin is 13.4 on monday it was 14.7 one of these figures is wrong. I have an injection each week called eypo which helps to produce red blood cells. These carry oxygen around your body and thus with a low level you get very tired and have no energy. The normal range is about 13-18 (I think). When I was a child and on dialysis my haemo levels were around 5.5-6. I honestly don't know how I managed. Eypo has had such a dramatic effect on renal patients lives. Well done to the drugs company and researches who discovered it.
Plasma was fine today. Only took around 2 hours - they ran it quicker. The staff are great and the needles are smaller - makes a big difference. I had the odd minute of feeling slightly odd - but nothing to serious.
I was quite tide this afternoon so lay on my bed for a while and dozed whilst listening to the cricket.
I can't decide if I should continue running. In some ways I really want to but I am cautious about knackering myself.
I have a date to see the surgeon which is good. I also have to see another doctor to prove that I am me - and that dad is dad. We have to take photographs?? Some government regulation.
This makes me think it is about time that this government - no all politicians started to cut all the political correctness and paperwork. It just takes up valuable resources and time that could be spent on better things. I don't want to sound like I am complaining as I am very very gateful to the health service and every single tax payer in this country and always will be. I do feel passionate though that there are so many good people working on the ground level who are being restricted and controlled by "the management". Another piece of evidence for this stupidity. Eypo, the drug I was talking about earlier, costs the hospital 17.5% more if it is given dispensed in the hospital (vat), if it is delivered to your home it does not cost that. So what you might ask. Eypo has to be stored in the fridge. If your dose changes you obviously need a new delivery, doses change frequently. So the government which is trying to promote more public transport, a greener environment is charging less for a van with a refrigerator to deliver a month supply of eypo to your door step. This is both inconvenient for the person at home (working hours only) and also is crazy for both the environment and road congestion. Sort it out politicians.. At least price it the same regardless of the location.
My lymphocytes have dropped from 3 units to 1.6 units. That basically means that my internal armies have halved. This I think is what the doctors are hoping for - these little things are the things that cause rejection.
My phosphate has risen back up but that is not a surprise as I have been eating calcium foods and liquids and these contain phosphate. My haemoglobin is 13.4 on monday it was 14.7 one of these figures is wrong. I have an injection each week called eypo which helps to produce red blood cells. These carry oxygen around your body and thus with a low level you get very tired and have no energy. The normal range is about 13-18 (I think). When I was a child and on dialysis my haemo levels were around 5.5-6. I honestly don't know how I managed. Eypo has had such a dramatic effect on renal patients lives. Well done to the drugs company and researches who discovered it.
Plasma was fine today. Only took around 2 hours - they ran it quicker. The staff are great and the needles are smaller - makes a big difference. I had the odd minute of feeling slightly odd - but nothing to serious.
I was quite tide this afternoon so lay on my bed for a while and dozed whilst listening to the cricket.
I can't decide if I should continue running. In some ways I really want to but I am cautious about knackering myself.
I have a date to see the surgeon which is good. I also have to see another doctor to prove that I am me - and that dad is dad. We have to take photographs?? Some government regulation.
This makes me think it is about time that this government - no all politicians started to cut all the political correctness and paperwork. It just takes up valuable resources and time that could be spent on better things. I don't want to sound like I am complaining as I am very very gateful to the health service and every single tax payer in this country and always will be. I do feel passionate though that there are so many good people working on the ground level who are being restricted and controlled by "the management". Another piece of evidence for this stupidity. Eypo, the drug I was talking about earlier, costs the hospital 17.5% more if it is given dispensed in the hospital (vat), if it is delivered to your home it does not cost that. So what you might ask. Eypo has to be stored in the fridge. If your dose changes you obviously need a new delivery, doses change frequently. So the government which is trying to promote more public transport, a greener environment is charging less for a van with a refrigerator to deliver a month supply of eypo to your door step. This is both inconvenient for the person at home (working hours only) and also is crazy for both the environment and road congestion. Sort it out politicians.. At least price it the same regardless of the location.
Tuesday, 4 September 2007
Tuesday - second day
Woke up at about 11am today. Had normal type of sleep on and off. Took a sleeping pill which helped. It seems that being on dialysis has a major effect on the ability to sleep. Many of us find this - I think the doctors should pay a bit more attention to these types of things. Normally they say see your GP - I am not sure this approach works with renal patients. Perhaps they need to make the communication better. I am lucky and I have an amazing GP and consultant who I can talk to openly and understand what is going on. But some of the reports I here from other patients is not as good.
Had some sad news yesterday - one of my fellow dialysis patients died on Sunday. I had been dialysing in the same slot as him for the past 18 months. So that is sad - he had major heart problems. Not much more I can say really, I tend not to get emotional over death - unless that person is very close to me. I feel that death comes to us all and have accepted that fact. When you have accepted that it actually makes living easier!
Dialysis in a couple of hours first time I would have dialysed on a tuesday - the television is shit as well which makes it boring. Probably take a dvd.
I am now on a full regime of antirejection drug in preparation for the transplant. I cant imagine what is happening inside my body at the moment. yesterday literally blasted all my white blood cells apart leaving with little immunity.
Had some sad news yesterday - one of my fellow dialysis patients died on Sunday. I had been dialysing in the same slot as him for the past 18 months. So that is sad - he had major heart problems. Not much more I can say really, I tend not to get emotional over death - unless that person is very close to me. I feel that death comes to us all and have accepted that fact. When you have accepted that it actually makes living easier!
Dialysis in a couple of hours first time I would have dialysed on a tuesday - the television is shit as well which makes it boring. Probably take a dvd.
I am now on a full regime of antirejection drug in preparation for the transplant. I cant imagine what is happening inside my body at the moment. yesterday literally blasted all my white blood cells apart leaving with little immunity.
Sunday, 2 September 2007
Quarantine
Due to all the dealys and changes of plans this is the second time I have gone into quarantine... The last time was the end of July in which I thought the treatment was going to start.
I have been living in a self imposed quarantine for the last week. This is to try and stay well for the start of the treatment. I basically have not been out except for dialysis since last weekend. Alhough I have continued my running and walking - as this does not mean contact with other humans.
One can obviously not guarantee not getting ill but I am sure it will reduce the risk. I will carry on this isolation for all the time of the treatment and hopefully for a few months after the transplant takes hold, well at least until my immunity starts to get stonger again.
I have been living in a self imposed quarantine for the last week. This is to try and stay well for the start of the treatment. I basically have not been out except for dialysis since last weekend. Alhough I have continued my running and walking - as this does not mean contact with other humans.
One can obviously not guarantee not getting ill but I am sure it will reduce the risk. I will carry on this isolation for all the time of the treatment and hopefully for a few months after the transplant takes hold, well at least until my immunity starts to get stonger again.
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