The 5 years check marathon is now started… We slowly started with bones density and all appears to be ok on that side! This is ok to go through these checks on a yearly basis. It is supposed to be my last yearly check as they usually do this only for the first 5 years after the transplant. I don’t know why but I feel that when I’ll meet with my haematologist, I will hear that I may have to go for another round next year as my GVHD is still active so it is best to keep coming on a monthly basis on top of the photopheresis.
I know it sounds a bit cynical but when you have weeks like the current one i.e. blood test, dentist, bone density test, dermatologist, breathing test followed by 2 days of photopheresis and 1 PET scan to check whether I still have funny lymphocytes, believe me you get tired of all this! But ok… I keep it up, still look at the bright side, I have access to good quality medical services including fantastic follow-up tests and the medical personnel does not leave any track unexplored and guess what! Am still there to go for the tests and treatment so bottom line all good news.
You are right, this post becomes fairly long but we are in the middle of a marathon as I stated earlier so you will have to read another couple of paragraphs I am afraid.
Did get my monthly visit and it looks like my scleroderma is stable and so we’ll keep the same rhythm for the photopheresis and hope for the best… The great news did come… The results of my bone marrow test came back all green!!! First impact, no PET scan needed… This one is a real relief! So I know it will be a long journey to do this for another trimester but I keep hoping that will help to go back to normal.
On the other hand, not everything is great… My sugar level is clearly close to diabetes and so new pills to bring that back to normal to avoid caramel in my blood!😱.
I also keep trying to have my haematologist to work on a preface for my book… Hope she’ll do it…