I received an appointment for my initial consultation to discuss the Stem Cell Therapy / Bone Marrow Transplant treatment option in the post this morning. It’s with Dr Akil, who is another Rheumatologist that specialises in Systemic Autoimmune disease, on November 28th. The appointment is at the Sheffield Hallamshire hospital over in Yorkshire, so is going to be quite a trek, but my dad has offered to come with me and my fiance, for support and to share the driving.
The most recent information sent by my own Rheumatologist was a lot more helpful in understanding the procedure itself and I feel like I’ve got my head round things a bit better now. That doesn’t mean I’ve made a decision, but I’m more open to the idea of discussing it. I took a break from reading too much into it, but now I have the appointment I’m going to have start looking at the information available online (related to the procedure itself, although mainly aimed at Leukemia patients). I’ll be doing this in small chunks again, so as not to get too bogged down and overwhelmed by it.
I think our main issue is still fitting this option into our longterm plans to have a family and this is something I want to discuss thoroughly. I’m also seeing another Rheumatologist who is now having input on my care - a Professor Moots at Aintree – on Novemeber 14th. He’s been a part of the decision to put me forward for the Stem Cell treatment, but I’m also going to ask about a previous suggestion of trying a combinaton of two biologic drugs; double check there are no trials or new drugs in the line up and possibly, what his opinion is on pregnancy and remission.
This last thing is something we have been thinking about in light of having to turn to the Stem Cell treatment one day, since the chemotherapy would leave me infertile. If there is a chance that pregnancy could result in some sort of remission, even only temporary, it may be worth pursuing. After that, there may be more options to consider before resorting to the Stem Cell treatment, but if not it, at least it wouldn’t seem quite the sledgehammer to our future family plans. That’s our thinking anyway, but obviously it would need the support of my doctors.
So there we go, that’s where things are up to right now. I have lots of thinking to do and questions to make a note of before both appointments.
Who knows where they will take me.
L
Best of luck with your appointments! I hope the new doctors help to make things clearer and a bit less scary!
Thanks Nisha!