Cross matching, plasma and press

Quite a bit to update. Firstly I am feeling tired - due to low hb and am finding if I walk quickly I get out of breath. This is not due to some sudden loss of fitness, it is due to low hb. I basically can't get enough oxygen to my body and thus it gets tired and breathless.

The cross match results showed little change - the original antibody seems to be controlled now. But we have these wierd antibodies that are giving positive cross match results. Hopefully roche will come back with some good news.

Press. On plasma this morning I was phoned by one of the transplant coordinators to ask if I would go on the radio. An hour later I was live on BBC Bristol Radio taking part in a discussion about transplants and there effects. I now have the evening post wanting to do an article on me and transplant - appearing next week- I guess. I am always a bit reserved about the press but think that this is a good cause and that there heart is in the right place. We will see.

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.

Devon

I am in Devon - a change of scenery which is great. Plasma this morning was fine got through the process in the shortest time yet! My parents picked me up and drove me back to Devon - I then had a sleep for a few hours and have just risen my sleepy head.

Spoke with one of the doctors and she said that my recent tests/cross matches that are suprising people and delaying the transplant are causing some confusion. The latest thinking is that the rituximab is actually binding/reacting with the donors blood giving postive cross matches. I wonder if anyone else around the world has heard of this happening and how can it be proved?

The " a million thanks " has raised over £500 in under 2 days that is brilliant. It is key if we all want to raise the million that we donate £2 and tell 10 people why they should donate. The feedback I am getting from people is really positive and excited - I thank everyone for that and say keep it up.

Next week I am going to try and raise the awareness of the fund raising effort. If you know someone or are someone who could raise the awareness through the press etc I would be very grateful to hear from you. The more awareness we can get the better.

Thought about todays results

In my normal style I am causing some confusion and reasons for thought. From what I can gather (which is probably not all accurate) my cross match results have shown a number of different things. Firstly the antibody they are trying to remove has been removed but 2 new antibodies/b cells have shown themselves in the tests, these appear to be more aggressive than the original problem.

The doctors are now talking to other doctors around the world to try and decide if there is a reason for this and what they can do about it. I wait to here more.

As my mum says "your body fights extremely strongly and then gives up" I reckon this is what is going on at the moment. I would not be surprised if I am sort of having acute rejection to the treatment at the moment. Once this has worked its way through then the results will become negative - we will see.

The next planned date is in a months time.

Skin

I have noticed that my skin is dry especially around my eyes and face. I am guessing this is due to drugs, plasma and dialysis having an effect on my body. I am also suffering a bit more from stomach aches - this I am sure is from mmf. Last time I was on mmf I had it much worse.

My hb has dropped again - 12.1. I am now positive that the mmf is having an effect and bringing my hb down by suppresing my bone marrow effectivness. I have raised it with the doctor and will see what they are going to do. I know that this type of thing if not caught early tends to cause problems latter on - with hb you need to react early as it takes a while to make it increase again.

Monday is cross match day - they took loads of blood today from both me and dad. A little bit of confusion over which bloods were needed but I think it was all resolved.

Blood pressure was a bit higher today 143/88 going on plasma and 137/72 coming off.

Not much else to report.