After emailing my Rheumatologist with an update yesterday, he replied to say that the referral to start the Stem Cell Therapy and Bone Marrow Transplant procedure had gone through.
Yikes. That conversation was real then.
I’m not commited to anything at this point, nor am I even close to making a decision about it; I have simply agreed to hear about what the procedure entails as a treatment option for Still’s Disease. It has been agreed that we have exhausted all other options and the medications are just not working for me. There was a suggestion that maybe I could try a combination of biologics, which is unchartered territory but perhaps less risky than the SC/BMT. I need to revisit this idea with him at some point as I forgot to ask about it during our last conversation; the focus becoming SC/BMT.
There is only one hospital in the North of England that carries out the procedure and that is in Sheffield, about 90 miles away from home. That’s going to make it tough spending any long amount of time there. The funny thing is, that the only Haematologist to carry out the procedure also happens to be my Rheumatologist’s brother, which makes me feel I will be in safe hands. There shouldn’t be any communication issues between the two at least!
The first step is to see a Rheumatologist called Dr Akil at Sheffield Hospital. My Rheumy thinks it’ll be about four weeks before I get an appointment, but I wonder if even that is optimistic. It doesn’t sound very long and I’m kinda nervous about seeing a new doctor after all these years. I’m wondering if he will have access to my huge volume of notes, or if he will want to do some tests and investigations himself.
I was also sent some information about the procedure, although it is so rare that he hasn’t been able to find any patient-based info. Instead, it is a 21 page article full of medical jargon. I couldn’t face reading it straight away, it was enough to have it and realise that all this is very real. Today though, I decided there was no point sticking my head in the sand and that I needed to face it head on. It is going to be a massive decision and so I’m going to need as much information as possible to make it properly, plus enough time to process and take it all in and to address any questions I have about it all. Better to start now then.
And start I did, but after two and a half hours of reading I am only six pages in and have decided to leave it there for the day. Because I want to fully understand what’s in front of me, I’m constantly checking up on word meanings and acronyms and making notes in a separate document. It’s like being at school again, which would be great if it wasn’t such a personally daunting subject. My GP, (who popped round earlier to see how I am getting on since leaving hospital), has kindly offered to interpret anything I don’t understand though at least.
So what have I learnt so far?
- Only 3000 of these procedures have been carried out for people with autoimmune disease since 1995 – worldwide; about 175 a year.
- It will be an ‘Autologous’ Stem Cell Transplant, which means harvesting and replacing my own cells.
- Remission is possible, both longterm and temporary; if temporary, returning symptoms tend to be easier to treat.
- It is also possible that there will be no change and there is, of course, risk of death.
- With Still’s Disease, the main risk of death comes from Macrophage Activation Syndrome, which can occur at either stage of the procedure. This is something I have already suffered from, I discovered recently.
- My Still’s medication would be stopped as early as possible and I would have to rely on Steroids to prevent any further flaring.
- I would need chemotherapy – I guess that might seem obvious but seeing it in writing makes it real.
And that’s about as far as I’ve got really, wading through all the medical jargon. I’ll read some more tomorrow and keep posting about it here. Since it is such a rare procedure, I think it is a good idea to keep a record of it for others that may need it in the future, even if I don’t go the whole way. Because it doesn’t just stop at understanding the procedure itself, or even coming to terms with the risks – it’s the whole impact on my life and future, the future I share with my fiance and any plans that we might have to start a family etc.
So much to think about,