One Step Closer

No hard answers, but closer to what I want. The pulmonologist wants a repeat of my pulmonary function tests and my six minute walk test. The last six minute walk was done wrong. The point of the test is to see how many feet you can walk in six minutes, back and forth in a straight line. The idea is to do as much as you can without feeling like you're going to pass out. Good is as close to 400 feet as possible. When I did the last test, the tech did it wrong. She made me stop every time my Sp02 dipped below 88%, which was every thirty seconds, so the distance that I could walk was essentially cut in half. So we'll repeat the walk, repeat the measurements of my lung function and oxygen diffusion. Then she wants to do a repeat VQ scan to rule out any clots in my lungs that might be affecting the pressure. After that we'll be repeating the right heart catheterization to get a true measure of my pulmonary blood pressure. It's usually a simple outpatient procedure; they thread a catheter into the femoral vein through an incision in your groin and thread it up and into your heart where they use a balloon to measure the pressure. Being on blood thinners presents a complication. Coumadin, the blood thinner that I take, takes a while to build up in your system, though I can get it out of my system quickly so that I could have the procedure without a major bleeding risk, I would be at risk for a clot after the procedure. If I was already in the hospital, they would just give me intravenous heparin, but if I want to keep this outpatient, I need to get insurance approval for Lovenox, a subcutaneous injection of low-molecular weight heparin that would work like a bridge until we could get the Coumadin back to therapeutic levels.

From all of the new tests, we should have a good handle on where my pressures are and how stable the disease process is. If it's still unstable, we may need to switch from the ambrisentan and sildenafil that I'm now on to a either Flolan or Ventavis, drugs that are delivered by an infusion pump, infusing through a semi-permanent venous catheter implanted in my chest. Hopefully we won't have to go there though. I'm not really looking forward to taking care of a port or having to deal with a 24-hour a day infusion. Though I'll have to get a port for the chemo anyway, so it's not

At the same time I'm going to see a hematology-oncology doctor and head of the transplant team at Jefferson. The pulmonologist sees no reason that we can't start the chemotherapy before we get the pressures under control to see how well I tolerate it. If I do tolerate the chemo well and we can get the hypertension under control, then there doesn't seem to be any reason that we can't go ahead and do the transplant. It was great to talk to the doctor yesterday. She very clearly understood why I would want to go for transplant rather than just the high dose chemo and while we couldn't make that decision before she has some more empirical data about where things stand, I'm confident that we'll get there.

I'm really excited. This was the first time that I got the indication that this was not only a definite possibility for treatment, but that if this is what I want then we can probably make it happen. It was also nice to talk to someone who really seemed to be familiar with all sides of the argument here. I talk to so many doctors that are very familiar with one of my diseases, but this one was familiar with all of them and has treated other people in very similar situations. She understands that when you're living with a prograssive, eventually terminal disease, that you're much more willing to risk it all for the glimmer of a cure. It was good to talk to her about how difficult it is to be able to back up these treatments with multiple studies because of the numerous disease process variations and how so many of us are willing to be the test subjects for the hope of a cure. Five years ago, this diagnosis would've elicited a shrug from most docs. All of the treatments are new. All of them are experimental. No one has enough experience with any one treatment for this combination of disorders to do any more than make an educated guess about the outcome. But that's comforting in many ways. None of the docs that I'm seeing act like gods. None of them are afraid to say "I don't know" or that they'l have to sit down with their colleagues and talk it out. I feel much more comfortable with other people that can admit that they're often fumbling around in the dark too.

And as it turns out, I still have a life that doesn't involve any medical terms. Last night I sat on the phone for a couple hours with a good friend of mine. She and I have been incredibly close since we were in junior high school. We were inseparable throughout our teens. About six years ago she went away to college in Boston into an intensive five-year psychology program at Northeastern University. We haven't seen much of each other since then. She finished her bachelor's last year and has moved in to a nurse practitioner master's program at Columbia University. I'm thrilled for her success, but I do miss her a lot. So it was really good to get to chat for a while. It's nice how effortlessly we always slip back into the old "us" after not speaking for months at a time. It's good to really feel that we'll be friends for our whole lives, no matter where they take us.

After she and I got off the phone, BF and I went out to dinner and then to the midnight showing of Watchmen with my brother and a bunch of his college friends. My brother isn't a college student, but his best friend goes to school at one of the local universities and he's always there. He eats in the commons. He hangs out in the lounge. He uses the gym. It's like the whole college experience without learning anything. It was nice to go out with a bunch of kids and sit in a movie theater until three in the morning again and the movie was awesome.

We've been doing a lot lately. Going out shopping, to the movies, to dinner. It's really refreshing. It's amazing how much difference a change of scenery has made in how I feel. Last week I was able to go food shopping on my own, something I haven't done in a year or more. I've been cooking, cleaning, moving, and going out a whole lot more than I had been. It's a nice boost. I'm still having bad days. I was exhausted after going to the pulmonologist yesterday and I've been having intermittent bad join pain in my hands, shoulders, hips, and knees. I've been having more good days though. I don't know that anything has changed medically, but I'm in a better place, a better situation, and really, when you have to do something sometimes it just happens. Not everyday, but some, and that's certainly better than none.

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