In essence I am ok, I feel ok, no sickness etc... I just still have no blood! On a positive note over the past few weeks have seen my white cells and neutrophils start to increase, with a little help from GCSF cell boosting injections and from 0 they have risen to 2 which is good. Although when the injections stop they drop a bit but at least they are producing.
It has been confirmed that the reactivation of the CMV virus and the subsequent treatment knocked my new graft cells and that is why it is very fragile right now. Another positive is that I have 100% donor cells now but although that should seem great, they don't seem to be working or doing very much from the blood results! Positive again is that my skin GvHD rash seems under control and they are focussing on getting me off the steroids, i'm on 20mg a day now and actually can see a small (very small) difference in the swelling on my face.
It is a tricky time as they need to balance the supression of my immune system as I come off the steroids and continue on Cyclosporin. However, bit of not so good news is that my kidneys are still not great but they are not getting worse so they think it is just the overload of toxic drugs which should get better with time. I had a kidney ultrasound which showed they were normal at least. However my liver over the past 2 days has gone bad! The number of enzymes has increased massively and this is bad apparently, they will do a liver ultrasound as they think it will be swollen and this will most likely be due to have GvHD in the liver, which in turn means I would need to go back on a higher dose of steroids.
So we are still watching and waiting for the next few weeks and then I don't know. Part of me wishes they'd just give me the top up cells and be done with it. I am going to speak to my specialist Prof Marsh on Monday (the consultants do a month rotation on the ward and as luck would have it she is doing March!). I trust her and I just want to know what she really thinks...in her opinion and experience will my marrow recover sufficiently.
The other thing I have been battling with and thinking about lately is that even though I have learned so much about my illness and the treatment of the years, I know the risks etc... it has dawned on me more that rarely are you 'cured'. Speaking to transplant patients tells me that the real story is that you often live with something forever, maybe liver problems, skin problems, Gvhd etc.... I mean it can be ongoing on and off for the rest of your life. Don't get my wrong it doesn't mean you can't live a normal life, I mean, pre transplant I was working full time, living normally and still having transfusions twice a week. What I mean is that when you tell people you are having a bone marrow transplant they think that is it. If it works you are cured forever....really it is only just the beginning of another story... I'm just hope mine has a happy ending and I wish that there was more support for people with more truthful answers.
On another note I have written my letter and made an official complaint to Kings College Hospital NHS Trust regarding my lack of post transplant care and the subsequent detrimental affect it has had on my transplant success. Believe me I am not one to complain really but I could not let this go unsaid. We will see what happens. It was quite therapeutic at first to write it all down and get it out of my head but today, because I had the not so good news about my liver, I feel a bit angry that my current situation could have been prevented, I mean it is only my actual life we are taking about. That is the frustrating thing too, you get a high one day because bloods have gone up a bit and there is a glimmer of hope and all your friends and family are asking what your bloods are,are they rising etc... but in the blink of an eye things can change and you are on a complete downer.
I just want to get on with my life, I don't want much, just to go back to work, see my friends, family and Rich...nothing fancy...just normal life.
I'll finish with a nice pic of my 'substantial' (NOT) salad I had for lunch...actually I have one every day, yes every day, either cheese or egg as it is the only way to get fresh veg! seriously... and one of my risotto which is stuck together like a pancake with the congealed cheese round the side...enjoy...I didn't.
