[Chirley]

Thanks for the answers.

I have just come home from the hospital. I have spoken to the new haematologist and I'm feeling a lot more confident.

He says I don't have MDS!!. I have some bone marrow failure of unknown cause, but I do have malabsorption problems. I have non existent iron levels despite blood transfusions every 5 (now 4) weeks for the last 2-3 years. I also have next to no B12.

I have started on weekly B12 injections (today) and now have to take B6 and folic acid every day as well. I have also been started on a PPI to try and reduce diffuse inflammation in the gastro intestinal tract. (found on biopsy). As I get Steven Johnsons syndrome from iron, I still haven't got a way of replacing that yet. However, he has done some research, and thinks he has found a form of parental iron that I haven't had yet. He has asked me to go home and think about being admitted to ICU and trying this new form of iron. He says there is a possibility that I could have an anaphylactic reaction, but if I'm already in ICU , then I should be alright.

He is a little concerned that I have developed candida of the oesophagus because it indicates that my low lymphocyte count is becoming a problem. He hasn't offered any explanation for the white cell problem or any treatment for it either. He has started me on fluconazole.

The part that I liked, was that he gave me choices. If I don't want to try the iron infusion, then I can continue to do what we are doing now, or I can be admitted to day care every week for 1 to 2 units of blood, which can be run faster and I won't have to spend 2 days and a night in hospital every month.

I'm hoping that by treating my B12 deficiency,it will slow the rate that my anaemia progresses and I won't need to be transfused for the iron part of the anaemia. (or at least, not as often).

He also reassured me that the kidney failure I developed, is as a result of low perfusion and that if we don't allow my Hb to drop very far or my blood pressure to drop as far (sometimes as low as 70/30) then it should repair itself.

I have to go back and see him in 4 days time and he wants an answer to the ICU/iron infusion question by then. He says that I would need to do this when my Hb is still high from the transfusion. I feel that I'm not being given a lot of time to think about it, but maybe that's a good thing.

I also have to have a pill cam to investigate the high gastrin level and he thinks I might need to have some kind of angiogram as well, but I felt a bit overwhelmed by this part of the conversation and started tuning out. I'll have to ask him about this next time I see him. This poor old, B12 deficient brain couldn't take it all in.

I'm very tired, I can NEVER sleep in hospital, specially when they do obs every 15 or 30 minutes. So, it's a lovely cool shower and off to my own, comfortable, queen size bed with my own soft comfortable pillow. Bliss.

Bye

Chirley