I have the first of this month’s two important appointments tomorrow.
After my recent hospital admission, when it was confirmed the Infliximab was no longer working, my own Rheumatologist, (who I’ve now been with for eleven years), was at a bit of a loss what to do next with me treatment-wise and felt that we had exhausted all the different types of biologic drug available. He decided to bring in some other Rheumatologists to comment on my care and together they decided to refer me for the Stem Cell therapy / Bone Marrow transplant. One of these doctors was Professor Moots at Aintree hospital and they have since been discussing my treatment between them.
Tomorrow, I have an appointment to see Professor Moots in Aintree; the first time I will have met him. I’m a bit nervous since it will also be the first time I’ve spoken to a different Rheumatologist about everything in over a decade and I’m not sure what to expect – how much will he already know? I’m hoping he has some notes on me or else I could be there for a long time! Will he want to run his own tests and maybe re-diagnose the Still’s Disease himself or will he just want to discuss where my treatment plan is going to go next?
I’m also unsure how much I will get to talk about or ask. Of course I want to ask about the Stem Cell therapy and why this has been decided on as the next treatment option, but I also want to check that there are no alternatives – revisit my Rheumy’s suggestion that I may need two biologic drugs to block two different pathways; ask about any new drugs that are in the pipeline or clinical trials that may be open to me at some point in the future and then lastly, whether he thinks there is any chance of remission through pregnancy before facing infertility with the chemo.
Speaking of which, I happened to come across an article while researching the Professor and this following excerpt gave me a little glimmer of hope:
What has been your most satisfying case?
“That has got to be the case of a girl who had RA. She had seen several doctors and was convinced, because of her condition, that she would not be able to have children.
She came to see me because I look after some of the most difficult to treat cases. We got her much better. She got pregnant and now has a healthy baby boy.
She did not want to accept that she would never have children and thankfully we were able to help her.”
So today I have been trying to prepare myself for the appointment as much as possible; to think about what I need to say and ask and what he might ask in return. As well as feeling a bit nervous, I’m interested to see how it goes and what comes of it.
Hopefully, it will be mainly a positive experience.
L
The last part of your post made me cry ~ I so hope this doctor gives you hope & finds a way to bring your dream come true ♥
Thank you, there is so much for us to consider right now but I’m hoping I can be well and have the future we want too.
It sounds like you are well prepared for the visit and that he has a serious interest in helping you. Good wishes