So I have been out of hospital after needing the anti viral drugs for just over a week now and I am feeling good and positive.
My GvHD is under control and they are reducing my steroids, they were reduced yesterday...can't wait to get off them, although it will be a few weeks yet, as it is the one thing that makes me feel rubbish. They swell my face to the point it is sore and HUGE! but at least I know that it will go away when I am off them so it is a temporary thing to have to put up with.
They have also reduced the anti viral mediation I am on to control the CMV virus as that makes your bloods drop a lot and it means I have had very low blood for a few weeks now. However once they recover which should start happening from now it will be good as we already know I have 97% donor cells in my marrow so they will kick into action as they won't be so suppressed.
Linked to this is that my body has started transferring my blood to A+ which is the donors blood group. I was/am O+. What happened initially is that my red blood dropped very quickly as I was making antibodies to the 'foreign' A+ blood that my new cells were making so the blood cells were dying quickly, hence my need for transfusions a lot. Now I am making both blood groups and because I am am coming off the anti viral drugs which were suppressing my blood cells it means that soon I will turn properly to A+ blood as they will be able to develop in my marrow to healthy full red blood cells. It is all really fascinating!
I am feeling much better about lots of things, very positive, so happy this is all working. I still have a way to go but I see light at the end of the tunnel. I can think more about the next couple of months and building my strength up to go back to work etc... and that feels really good. At one point a month or so ago I felt so low and like I would be off work and poorly forever! I know, of course, you never know what could happen, but things are looking positive for now and I am very thankful for that.
I actually had some blood today and I wanted to mention the Northampton Haematology Day Centre...well it is now called the Macmillan Haematology Unit as they have just had a complete rebuild of the unit and Macmillan has paid for this...costing £2 million pound...This unit has been an essential part of my life for a few years now and has helped me so much. It really is amazing in there now state of the art and so much more comfortable when you are not very well, sitting there for hours at a time having treatment. The nurses are an exceptional team who I have become very close to and I wanted to let everyone know that they had to and are still fundraising to pay for the unit so if you want to donate then that would be lovely! I wouldn't be here today if they hadn't been able to help me so much. Prior to my transplant I was there twice a week having blood products to keep me alive, they were so accommodating to my life too, enabling me to have platelets in the morning before work etc... Sorry if I went on there but it is important to me.
Anyway best be off...rich is cooking me dinner...with my instruction (he he)...I am a hazard with a knife at the moment with my shaky hands....again drug side effect related so will go soon! Although with my new Kenwood Chef Mixer I am baking again which is a great therapy for me. Yummo!
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