I'm so sorry I haven't been blogging! When I arrived at NIH the floor those of us with Hermansky-Pudlak Syndrome typically stay on had been closed for the holidays. They had shut everything down, including all the patient computers, and for the first day no one knew how to get the internet access back. This evening they finally brought me instructions on how to make the wireless connection work, but they're in tiny print.
So, I I have been blogging, but I'll have to post those entries later, maybe when I get to Ryan's. But, I thought I'd post briefly just so you all would have an idea of what's going on, at least on the medical front.
I had a great flight into NIH. I got to take my favorite airline, Midwest and I got not only the big Midwest seats, but no one was sitting next to me. I took the baby with me and wrote most of the Marketwatch department for the magazine while listening to music - it was great! The battery on the computer doesn't die out quick, I could read the screen and I had plenty of room to stretch out.
The only down side to the trip is that I've had what Kevin has determined to be a virus. It feels like a sinus infection, so my head feels all congested and I feel sort of medicine headish. On top of that, being on a floor that has been completely shut down for a week was rather chilly the first night. I about froze. I had considered bringing my favorite fuzzy blanket, but had decided against it in view of all the other stuff I have to carry. It just seemed too much silly - but now I'm sorry. I should have brought it.
I asked the nurse for a blanket, and she brought me several, but they're hospital blankets. They might as well be sheets. I got up in the night, got my winter coat out of the closet, and put it over me to keep warm. Needless to say, I didn't sleep at all and I didn't feel good into the mix.
That had me rather worried about my PFTs. Although I had managed my usual NIH anxiety pretty well going into this trip, suddenly I felt very panicked. What if this cold affected the results? What if they went down? What if I'd have to wonder for the next four monthis if a decrease was HPS related, or just the cold? Ahhhhh.....
I did the pulmonary function tests first thing in the morning. Half way through the test I felt kind of dizzy, and that made me panick even more. What did that mean??? I did the six-minute walk and that seemed to go okay. I was out of breath, but not just gasping as I usually am. My oxygen saturation only fell to 94 this time, not bad at all.
I waited while the tech put my PFTs in the chart - a printed copy! Yippee!!!!! I could stop and take a peek. I wouldn't have to suffer the agony of waiting. I couldn't believe what I saw on the paper. Again, as I always do, I questioned whether I was reading the lab report correctly, even though I've read them for years. What I saw on that paper couldn't possibly be right. My forced vital capacity score went up, again! It's not only in the normal range, but well in the normal range. It is, in fact, perfect. My diffusion score is still low, 64, but up from previous tests. I feel so blessed!
I feel as though God has always somehow put me in the right place with the right people at the right time and it's truly amazing. I also a huge sense of responsibility about that. I've been so lucky when so many others with HPS haven't - I feel like I'm supposed to do something with that. Some areas of my life feel like they're in such transition, such upheaval and flux, and I just pray that whatever God wants me to be doing with these great lungs, that he makes it obvious. I'm not good at reading smoke signals. Grin!
I still have several more doctors to see. They're going to try to see if there's anything they can do to help me with some bleeding skin issues, some stoma issues and some female issues. But, all and all I'd say it's been a great trip.
I had hoped to get more work done today. But, to be honest, I've just felt cruddy. Kevin did some blood work and ruled out a bacterial infection though so we think it's a virus.
So, I I have been blogging, but I'll have to post those entries later, maybe when I get to Ryan's. But, I thought I'd post briefly just so you all would have an idea of what's going on, at least on the medical front.
I had a great flight into NIH. I got to take my favorite airline, Midwest and I got not only the big Midwest seats, but no one was sitting next to me. I took the baby with me and wrote most of the Marketwatch department for the magazine while listening to music - it was great! The battery on the computer doesn't die out quick, I could read the screen and I had plenty of room to stretch out.
The only down side to the trip is that I've had what Kevin has determined to be a virus. It feels like a sinus infection, so my head feels all congested and I feel sort of medicine headish. On top of that, being on a floor that has been completely shut down for a week was rather chilly the first night. I about froze. I had considered bringing my favorite fuzzy blanket, but had decided against it in view of all the other stuff I have to carry. It just seemed too much silly - but now I'm sorry. I should have brought it.
I asked the nurse for a blanket, and she brought me several, but they're hospital blankets. They might as well be sheets. I got up in the night, got my winter coat out of the closet, and put it over me to keep warm. Needless to say, I didn't sleep at all and I didn't feel good into the mix.
That had me rather worried about my PFTs. Although I had managed my usual NIH anxiety pretty well going into this trip, suddenly I felt very panicked. What if this cold affected the results? What if they went down? What if I'd have to wonder for the next four monthis if a decrease was HPS related, or just the cold? Ahhhhh.....
I did the pulmonary function tests first thing in the morning. Half way through the test I felt kind of dizzy, and that made me panick even more. What did that mean??? I did the six-minute walk and that seemed to go okay. I was out of breath, but not just gasping as I usually am. My oxygen saturation only fell to 94 this time, not bad at all.
I waited while the tech put my PFTs in the chart - a printed copy! Yippee!!!!! I could stop and take a peek. I wouldn't have to suffer the agony of waiting. I couldn't believe what I saw on the paper. Again, as I always do, I questioned whether I was reading the lab report correctly, even though I've read them for years. What I saw on that paper couldn't possibly be right. My forced vital capacity score went up, again! It's not only in the normal range, but well in the normal range. It is, in fact, perfect. My diffusion score is still low, 64, but up from previous tests. I feel so blessed!
I feel as though God has always somehow put me in the right place with the right people at the right time and it's truly amazing. I also a huge sense of responsibility about that. I've been so lucky when so many others with HPS haven't - I feel like I'm supposed to do something with that. Some areas of my life feel like they're in such transition, such upheaval and flux, and I just pray that whatever God wants me to be doing with these great lungs, that he makes it obvious. I'm not good at reading smoke signals. Grin!
I still have several more doctors to see. They're going to try to see if there's anything they can do to help me with some bleeding skin issues, some stoma issues and some female issues. But, all and all I'd say it's been a great trip.
I had hoped to get more work done today. But, to be honest, I've just felt cruddy. Kevin did some blood work and ruled out a bacterial infection though so we think it's a virus.
Comments
I ditto what Sandy said. This is GREAT news!! Praise be to God!! What a good way to start off a brand new year. May 2008 be a wonderful year for you health wise. Take Care!