Its been a busy few months hospital wise, lots of appointments but nothing too drastic going on which is always good. In my last post i talked about the research biopsies I was going to have on my arm and foot both went ok a bit of bruising and bleeding but that was expected. The appointment itself well . . . . I thought I was going to Guys hospital but good job I checked on the morning of the appointment as it was actually at St Georges hospital which i thought I had never been to before so was unfamiliar as to how to get there etc. Turns out I have been there before but with my rubbish memory I have no recollection of it and I have apparently seen the same consultants there but couldn't remember them either haha I did say its not you it is my memory she said “thats the second time in a couple of weeks that a patient couldn't remember meeting before” whoops! The research they are doing is into the link between GATA 2 and Lymphedema, if there is anything useful they will contact me.
My lipids and cholesterol have been all over the place so I've had to add statins to my ever growing list of medications. They say this is a common thing after a stem cell transplant but with meds and the right diet it should be under control. Soon I will be seeing specialists I've not seen before. I know, whats that you say? Have I not tried them all!! The new specialists will be endocrinologists.
Im also hoping to change my blood thinning medications to tablets in the coming months, after three years of injecting myself everyday with clexane it will be a welcome break. The first thing they need to check is whether I can have the new types of blood thinner rather than the old warfarin. This depends on whether my blood has a natural clotting agent called lupus anticoagulant as if you have this some of the newer meds or not compatible and before my transplant I had been diagnosed with this but there is now some confusion as to whether that was a wrong diagnosis.
Another consultant I have been to see is the rheumatologist. My yearly bone density test shows the osteopenia thinning of the bones has got slightly worse but as I'm at relatively low risk of falls calcium and vitamin D tablets will do for now. So I will do my best not to be clumsy as I'm more at risk of fractures and breaks.
On the bloods front they are not looking too bad, just slightly low iron levels which might be contributing to my fatigue. In everyday life I continue to do what I can when I can depending on how I'm feeling, I don't know from one day to the next how ill I will feel which does make it difficult to plan things.