Back to reality with a bump yesterday…… off the plane and headed straight for Kings hospital the next day.
Getting the train to kings felt odd yesterday. I’m not normally bothered by my hospital trips but I was restless on the train and had a moment of dread when walking through the door. I think it was after having had a break abroad I just didn’t want to return to normal hospital life!! But whatever the reason i was not happy with the prospect.
To my pleasant surprise I walked into find only 1 person (yes , 1 person!) waiting in the phlebotomy department in Golden Jubilee wing. The lowest I have experienced prior to that is around 25 i think!! So despite having an issue with not all blood tests being ordered I was able to get to haem outpatients, get them ordered and have my blood test in half the time it normally takes. Plenty of time to go get my nails done! 🙂 I would say it was nice relaxing pamper time, but there was a screaming brat wondering round waiting for her mum to be finished which kind of disturbed that.
So the consultation with Kavita was a bit mixed…..
Firstly they want to try and address my mixed chimerism. My lymphocytes are still showing to be mostly my old donor, not my new one. Now that my GVHD has calmed down then the plan is to slowly reduce my immune suppressants (tacrolimus) to see if this helps to bump it up a bit. This comes with further risks of GVHD (hence waiting till mine had calmed down). The GVHD could affect either or all of my guts, eyes, mouth, skin, lungs and liver. Hopefully with the slow pace this will reduce the likelihood of this happening!
Secondly they have found a genetic defect in my bone marrow samples, again! Prior to my transplant I was shown to have monosomy 7 defect. My understanding is that this is when either part of chromosome 7 is damaged or missing. Combined with MDS it is a huge indicator to the risk of developing Acute Myleiod Leukaemia as I started to do last year. (https://bloodwise.org.uk/treatment-and-side-effects/international-prognostic-scoring-system-mds)
This time I have got an additional chromosome 7. From my research (google!!) it seems that this sort of defect is linked to developmental disorders so no idea what it means for me. Also, the doctors aren’t sure if its something I developed or if it came from the donor (the donor has refused to be tested or we can’t get in contact with her). Which leads to them not knowing what the implications of this defect are. So basically the doctors have put me on a watch and wait. IF something untoward happens with my blood counts they will or anything else then they will do another bone marrow biopsy.
Well as most of you know I can be a bit of a control freak on some aspects, especially hospital care. I want to know whats happening and why all the time. This whole “watch and wait” business makes me very anxious. At the moment we don’t know whether this defect is likely to do nothing or if it could have strong impact. For a moment I found myself wishing it was just the same defect as before because at least we would know what was going on and be able to do a plan of action to deal with it. Of course I don’t want this as the likelihood is that I would be fucked but your thought process can be a bit strange with news like this!!
So i think teamed with tiredness from my mini holiday this but me in anxiety attack mode. The train home was hideous as I wondered if I was going to be sick, with hot flushes, etc. Made it home and into bed but still managed to vomit! Feeling better now, a bit tired and delicate but think I purged a bit of my anxiety at least.
All this hospital business feels never ending……
My bone marrow appears to be faulty, please can I get a refund?!?