Thursday, August 12, 2010
I hit 50 today (fev1) at CF clinic.* Yay! I was at 50 or slightly higher two times last year, and before that it was a couple of years since I had been that high. The true coolness to it is that I am continuing to go down on my Prednisone, which has inflated my numbers the last few years. I'm currently at 3mg/day, if that means anything to you, and hoping to be off it entirely at some point in the near future.
Other news from clinic: I may be switching from Zenpep, my current digestive enzyme, which I have been on for only a month. Let's just say it is slowing me down and I'm not as happy with it as I was my old Pancrease. I am trying a third enzyme now, Creon, which offers free vitamins. I hate to switch so much, especially when the reason for the initial switch was a pause in manufacturing of my old brand while it was rebranded, but it will be worth it to find something I am happy with.
I had to turn in all of my stuff from the aztreonam (an inhaled antibiotic) extended access program that I was on. I was sad about that because I am in the middle of a 28-day cycle of this drug, which I need three times daily, and I only have three nebulizers to do it in (whereas I had built up to nine with my new ones from the company plus my old ones from expanded access) - which means that I have to wash nebs every single day! That truly, truly sucks. One of the worst things about CF in a day-to-day sense is washing nebulizers. It is such a pain in the rear!
I continued to sing the praises of NAC, a supplement I've been on seriously for several months now, but my doctor is not as excited as I am about it. He wants to see the research done to prove that I am not just a fluke. But how can I be a fluke? People with CF don't just improve with nothing. In fact, even with the addition of therapies, they often continue a slow decline. Not only have my numbers gone up, and I have not been sick (plus other benefits I won't mention here,) but my Prednisone, as I said before, has continued to go down with few side effects. I have always had tremendous problems coming off Prednisone and it wasn't until the NAC that I was able to do it so smoothly.
Even though my doctor is a skeptic, he said that UNC might be interested in a simple research study with respect to NAC and me ... they would want me to drink it (like I do now) or inhale it (like is usually done for other conditions that use it) and then test how much is actually getting into my lungs. Sounds pretty painless and definitely for a good cause.
What else...oh yeah, did I mention that my fev1 was 50%??? :) :) :) Kind of makes up for all the other crap I've been dealing with lately.
*For those of you who don't know what this means, 70 or higher would usually be considered "mild" or, for me, low maintenance/low symptom CF; 30, on the other hand, is usually when you start to think about transplant.
Sunday, August 8, 2010
On Saturday, I went to my mom's pool, then was a little sluggish from the sun (I guess) at my yoga class. I went out with my mom for Indian food that evening. Today I slept in, ran a couple of errands, and then came home and did some stuff around the house. I even exercised on the elliptical machine. I also made several phone calls and caught up with out-of-town folks.
I am feeling better, mentally I mean. I have hardly had any abdominal pain since my GI appt last week. While I'm not convinced whatever it is has gone away, I do think it is at least not urgent, so that is good. My appt was kind of a flop. I didn't much like the doctor...I won't say more than afterward Todd said "it seemed like she kept forgetting you have CF." Yeah. That won't do. Also, she wanted to do an endoscopy, which I am not convinced is necessary. So I asked my CF doctor to refer me to another GI doctor at UNC, which is where all of my other doctors are. I am much more comfortable with that because if I do have to have any kind of procedure, everyone will be on the same page and my doctors will be the ones consulted if there are any issues.
In other news, my dad was discharged from the hospital on Tuesday and is doing better. My step mom also sounds better. That is a bit of a relief. I want to try to go up and see him sometime between when we get back from Montana (early Sept) and Thanksgiving, when I plan on going up there again.
And the consistent bright spot...my lungs continue to be really good. I don't feel like my PFTs accurately reflect how good I'm feeling. I have continued to go down on my Prednisone (I am at 3mg/day now) with no ill effects except for some pain while exercising today that I believe may be due to a little increased inflammation or my body getting used to this past taper. I know I wouldn't have been able to go down on Prednisone this easily without the NAC. Hurray!