One day I post three times and then a week without anything. Nothing to post really. I'm in a holding pattern. Waiting to do this IVF crap. My body isn't on board with that one, so it looks like we're going to have to shoot me full of drugs just to get things started. The problem being that I was on Depo-Provera for so long that I stopped having a monthly cycle and it takes some time to get going again once you're off of the shot. So it looks like they're going to have to give me another drug, called Prometrium, to give me a "fake period" (no ovulation involved) to basically get me back to Day 1 of a normal cycle and then we can start the follicle stimulating hormones.
My pulmonologist is onboard with the transplant. She agreed with my conclusion that with both my pulmonary pressures down and my diffusing capacity down, i.e. my breathing is getting worse, but my hypertension is getting better, it must be the pulmonary fibrosis that is causing most of the problems here, so the scleroderma is the major factor. That just reinforces the idea that SCT is the best option for me. SCT can't fix the pulmonary hypertension, so if that was out of control, we could only hope to see minimal improvement with the transplant. Since the scleroderma seems to be the key culprit and the PAH is under control, then if the SCT does what it should and kicks the scleroderma's ass, I should be in much better shape.
Still don't know if my lungs are ever going to be better than they are now. I've spoken with doctors and people who've undergone chemo for scleroderma with pulmonary fibrosis and the verdict seems to be that they can stop the disease from getting worse, but fibrosis is a buildup of scar tissue and they can't get rid of that. The PAH is still a big question mark. I haven't found anyone who has had SCT for scleroderma with PAH, so there's really no way to know. Some cases of PAH are caused by things like Fen Phen, but when the person stops doing the drug, the disease doesn't stop advancing. Other types of PAH are secondary to things like tumors or clotting disorders and when the underlying diseases are cured, the PAH goes away. So the question is, how will scleroderma react? Up until now SCT there wasn't anything out there that could "cure" scleroderma. High dose chemo might put it into remission, but not forever. So now I've got a brand new, experimental treatment, but even if this does cure the scleroderma, I don't really know what life's going to be like after that cure.
And that's just the medical side of things. I really don't know what life as a whole is going to be like post-transplant. I've never been well as an adult. I've never had the opportunity to work without waking up every morning and taking stock of my symptoms. I've never been able to make plans for next week or next month (or sometimes even tomorrow) without hesitation. I can't wait to get on a bike again, to run without worrying that I won't walk for a week, to get down on the floor and play with the little man without thinking about how I'm going to make it back up.
It's going to be like learning to live again. It's exciting, but it's also really scary. I'm hoping that I'll psychologically be able to jump back into life, that I won't hesitate. I'm really hoping to regain my social life and actually have some friends again. The big one that is hanging over my head is having a real job for essentially the first time. But when that really worries me I just think back to November of 2005. I was sick, my best friend had died of a drug overdose two months before, I was knee deep in end-of-the-semester insanity, carrying a full course load of five classes, I was working almost forty hours a week, and my only real coworker in the administrative end of the business, my boss, had just been fired without a replacement. I thought I was going to break down, failing the business and school while destroying my health. Instead I excelled. I got straight A's, all of the orders went out, and with the exception of a couple level 10 migraine headaches (I missed out on both Thanksgiving and Christmas Eve that year), my health remained pretty stable and I made it in to work regularly.
I don't know why I eternally doubt myself so much. Under pressure, when it really comes down to it, I always expect to fail and I usually come out on top. I'm a worrier I guess. Having so little control over my body also feeds that one. When I took my capstone class at Temple, we had to spend the semester writing a thesis paper on post-WWII Europe. A lot of the class was going back and forth to see the professor and discuss our ideas and spending time in the library doing research. I was just too sick to make it downtown much that semester. I missed half of my meetings and got so far behind that though I managed to crank out thirty pages on the collapse of communism in the Eastern Bloc, they were pretty much crap and combined with the percentage of the grade that came from just being there when you were supposed to, I managed to get a D- and it cost me my double major. So I'm hoping that when my body isn't such a big factor in the equation and I can rely solely on my intelligence and will power to get me through I can once again have some faith in my ability to make what I want happen.
So much for having nothing to post, right? You should see me in real life. It’s easy to understand when BF forgets I even said most of what I say. I can talk about nothing for hours.