I thought it might be appropriate to give you guys a link to the stem cell transplant procedure documents that were published by the SCOT clinical trial so that you'll have a more full understanding of the process. It's very well done with pictures and is probably more helpful than just reading here if you're interested in understanding the procedure.
So here it is: SCOT Trial Study Procedure
Just FYI, I'm not actually in the study and I won't be getting total body irradiation.
I have a right heart catheterization scheduled for 9 am tomorrow. Now some would ask "Rachel, why the hell are you still awake at six in the morning?!" The answer to that has several parts and sucks. BF and I decided to get new fancy slats from Ikea for our bed to make the comfort adjustable. He didn't realize how time consuming the assembly of the slats would be, so he started after we watched Lost (10pm) and didn't get finished until about 1:15 am. Shitty. So we went to bed, but I was sleeping in that half-asleep half-awake way that when you periodically wake up completely, you don't feel like you actually slept at all. Well, the last time I woke up was to a persistent cough that just wasn't right. As I continued coughing and woke up all the way I realized that I had rolled closer to BF in bed and off of the inflatable ramp that keeps my head elevated while I sleep. Because of this, stomach acid was able to back up my throat at which point I managed to inhale the caustic fluid in addition to getting a nasty acid burn at the back of my throat. Hurts like a bitch.
I've stopped coughing now, but I'm having lung pain and it's tough trying to get back to sleep, It's a pretty disturbing experience and I'm waiting for the Ativan to take away the scared, anxious feelings that I'm having. This is the second time this has happened in a month. The first time, I fell asleep on the couch and woke up to the same thing. I don't know what to do about it. I probably should see a gastroenterologist again, or just see if my rheumatologist can prescribe me some GI drugs that I know can help this kind of thing.
On another note, I've joined a new email scleroderma support group and I really like it. there are less than 20 members, but I like the format a lot more that the group meeting type. Not having to sit in a meeting once a week is a plus since I have no control over what my health is going to be like on that day and another good part of it is that is can just be an ongoing dialogue, not just x number of hours, x times a week. I feel like we've already got a good conversation going and I'm hopeful that it will get better.
Well I'd better try to get some sleep before this thing as I have to leave the house in just over two hours. I've also got to figure out how to tell BF that I don't think that I can sleep in our bed until this is under control. I mean, I take Nexium three times a day, I sleep on a ramp that elevated our bed by six inches, I avoid acidic foods close to bedtime, but none of that is good enough. He's going to be upset. It's really important to him that we sleep in the same bed. It's important ot me too, but not as much as it is to him, and not enough that I'll suffer for it night after night. I'm not looking forward to that conversation.
Ah well, I’ll deal with it tomorrow.