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.

So far

I am 30 years old suffering from renal problems. I was diagnised with renal problems in South Africa at the age of 6 months and went into kidney failure at the age of 7. I was put on CAPD (dialysis), my mum then gave me a kidney. This lasted about 9 months and then failed. I went back in dilaysis for another 4 years, cadp failed and I was placed on haemodialysis in which I was based at the hospital for 10 months at the age of 10. I became very ill with dialysis not working well and suffering from a temperature for over 6 months that was never traced.

Eventually I was placed on the European Emergency transplant list and was fortunate to receive a kidney (just in time it took a couple of weeks to work and then lasted for about 16 years with very few problems.

The kidney failed in December 2005 in which they tried to place me on capd again but could not get it to work so they put me on haemodialysis.

As my last transplant started to fail the doctors talked about desensitation programme and if I would be interested. I will talk about this later.

I have been on haemodilaysis for the last 19 months and have generally been quite well.

I have in total had 34 operations.

The purpose of this blog is to record the next set of treatment on me. I will aim to keep it updates as much as possible.

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.

Awaiting last test results

I am waiting to here dads last scan results to give confirmation that the procedure will be going ahead. Hopefully this will be happening tomorrow. If we get it then I will do a larger post tomorrow or Thursday and the blog will start proper.

Awaiting last test results

I am waiting to here dads last scan results to give confirmation that the procedure will be going ahead. Hopefully this will be happening tomorrow. If we get it then I will do a larger post tomorrow or Thursday and the blog will start proper.

Sunday

This is just an update. One more test to go and then we are given the green light to start the treatment. This will begin in September. I have been given the first version of the protocol to read and understand. Does not seem that complicated.

Just lots of things happening in a short time that are all quite important.

Update

Have not posted for a while as their was little progress on the kidney front. Since then we have reached the following. The funding has been obtained, the date has been decided and then delayed a further month due to more tests needing to be done. It looks like it will all start in September - as long as tests go well.

I will do a bigger update nearer the time and then keep the blog going with more details.