DR 17, anitbodies and results

Interestingly last week one of the cross match tests became positive. This was for the element they were trying to remove at the beginning. The doctors expected this to happen and where watching closely to see what the effect was going to be. It was possible that this could stimulate rejection and further treatment etc would be required.

It would seem, even though this cross match test has become positive that the kidney is not reacting to the change and has actually improved in its function. My creatinine is now (today 117) which is normal. I don't think I have ever had a creatinine this low. I don't really understand how the cross match can become positive but yet no rejection. I guess it is because the organ is already in the body and the bodies fighting system is so confused and weak that it does not recognise it as a foreign target at the moment.

It was also interesting that they were keen to get past the 3 week hurdle- this is the time that the DR17 reappeared. I expect that this is the average time (in other units) when they see anitbodies reappearing and causing problems.

I was also thinking what they changes to me have been since having better blood results compared to dialysis. I got on ok with dialysis and stayed quite fit and well but do recognise that it does put a lot of stress on your body. I found

- itching of the body especially after dialysis
- very restrictive diet
- restrictive fluid intake
- fuzzy mind that made it hard to concentrate for long periods of time
- time constraints having to be dialysed 3 times a week
- problems sleeping
- restless leg syndrome
- variable energy levels
- calcium and phosphate lumps on the body (these have already started to dissappear)


I also found that you have to go into a survival mode - that in someways takes each day as it comes and makes you less focused and less driven this is largely down to the restrictions and perhaps lack of expectations from dialysis patients.

Many patients who have come off dialysis have commented to me how hard it is to adapt back to being a transplant patient and not attending dialysis sessions. I can understand this but don't feel the same- sure I miss some of the staff and patients on the nights I dialysed and can understand that people would miss the routine and companionship. Personally I am only to happy to not have to dialyse at the moment and to be honest don't miss the routine etc - I would like to keep in contact with many of the patients and staff because I look at them as friends and am truly honoured to know such a dedicated and kind bunch of people.

Off to watch some of my friends ice skate at the zoo (in the rain) and then going to the pub. First time I have been out for a drink and met up with friends for about 14 weeks. 1/4 year.....

Desensitisation Protocol

What is it all about?

Having already had 2 kidney transplants that have had varied life spans my body has been exposed and thus sensitised to a number of antibodies. The kidney they want to use for the next transplant (a fmaily member) has one of these antibodies and thus my body would attack the organ if it was transplanted without precautionary treatment.

This treatment is called desensitisation, it has not been carried out at my unit yet but has been succesful in the states and London.

The basic idea behind the programme is to remove that antibody and prevent it from growing back and attacking the kidney.

The treatment includes plasmaphersis and the use of Rituximab an antibody killer. This is carried out until the antibodies reach the correct level and the transplant is carried out. I am not going into any more detail here, I will do it as I blog the progress.

It seems to be on...

I think that my treatment will start on Monday morning. I spoke to the doctors last week and they ran through what was going to happen. I have the desensitisation protocol copy that they are using.

I have also got a junior doctor helping out with all the administration of the procedures and blood tests. My main aim for this blog is not to keep detailed medical notes or procedural notes instead it is to log my thoughts and experiences so that other patients can understand what to expect and also to help others understand what is happening to me.

To begin with I am going to outline a bit about me and my life so far. This is just to set the scene.