I’m a bit late posting a health update, and an update on the transplant journey. I think I completely missed it last week. Please forgive me.
Last week was a very busy and a very productive week. We submitted a grant to Walmart asking for funds to help with conference. I don’t know if we have a chance, to be honest, but I felt like our grant application was a good one. Then again, I always feel that way – grin! I sometimes wonder with grants from large corporations like this one, if we stand less of a chance because we are not a huge national non-profit with lots of name recognition. We don’t fit the advertising campaign quite as well. But, we’ll see. If we did get this grant, it would be a HUGE boost to the conference!
We also made progress on another grant we’re working on to help fund Meeting of the Minds – the medical meeting for HPS researchers.
Lastly, we submitted our written testimony for the upcoming FDA hearing on pulmonary fibrosis. It was a week with a lot of deadlines, thus I’m so behind on communicating with friends etc.
As for my health, I was starting to get a bit worried over the last two weeks, but I think everything is okay now. For three days I noticed my oxygen needs were up. I know it is all about the long-term trends, and not just a few bad days – yet I can’t help but get anxious. Once my oxygen needs get over six liters in motion, I think being mobile and independent is going to get a lot more challenging. Thus, an increase had me pretty worked up. Thankfully, after three days things went back to status quo. I think it was an asthma flare up that was quickly and easily treated (thank the Lord!) When you’re on the edge, it doesn’t take much to make a big impact.
I had also started coughing again. I am convinced that the severe cough that no one could figure out how to treat for so long is the reason I experienced such advancement in my lung disease so quickly last winter. Which came first, the chicken or the egg? The fibrosis or the cough? I’m not totally sure, but I don’t think the cough helped at all! Thus, when I start coughing again with that kind of cough that makes your chest vibrate, all I can think about is little blood vessels breaking in my lungs and little traumas egging on the advancing pulmonary fibrosis.
The only thing that seems to work for the cough is Codeine. If you take it all the time, you get so you can tolerate it better and it doesn’t make you as sleepy all the time. I hadn’t needed it in months though, so I had stopped taking it. I don’t want to take a narcotic if I don’t need it. So, when I took it last week again, it knocked me on my butt!
Last weekend I didn’t go anywhere. I didn’t do shopping or go to church or even walk Finley until Sunday evening. I just slept. I’d wake up to go to the bathroom, perhaps try to start working on something, and as soon as I would sit in a chair, I’d just fall asleep right there.
The up side of that is I slept soooo good!!!!! Sleeping is a hard thing for me for a variety of reasons and medical issues. It is rare that I get a complete night of sleep. So, two nights in a row was like heaven!
We also made progress on another grant we’re working on to help fund Meeting of the Minds – the medical meeting for HPS researchers.
Lastly, we submitted our written testimony for the upcoming FDA hearing on pulmonary fibrosis. It was a week with a lot of deadlines, thus I’m so behind on communicating with friends etc.
As for my health, I was starting to get a bit worried over the last two weeks, but I think everything is okay now. For three days I noticed my oxygen needs were up. I know it is all about the long-term trends, and not just a few bad days – yet I can’t help but get anxious. Once my oxygen needs get over six liters in motion, I think being mobile and independent is going to get a lot more challenging. Thus, an increase had me pretty worked up. Thankfully, after three days things went back to status quo. I think it was an asthma flare up that was quickly and easily treated (thank the Lord!) When you’re on the edge, it doesn’t take much to make a big impact.
I had also started coughing again. I am convinced that the severe cough that no one could figure out how to treat for so long is the reason I experienced such advancement in my lung disease so quickly last winter. Which came first, the chicken or the egg? The fibrosis or the cough? I’m not totally sure, but I don’t think the cough helped at all! Thus, when I start coughing again with that kind of cough that makes your chest vibrate, all I can think about is little blood vessels breaking in my lungs and little traumas egging on the advancing pulmonary fibrosis.
The only thing that seems to work for the cough is Codeine. If you take it all the time, you get so you can tolerate it better and it doesn’t make you as sleepy all the time. I hadn’t needed it in months though, so I had stopped taking it. I don’t want to take a narcotic if I don’t need it. So, when I took it last week again, it knocked me on my butt!
Last weekend I didn’t go anywhere. I didn’t do shopping or go to church or even walk Finley until Sunday evening. I just slept. I’d wake up to go to the bathroom, perhaps try to start working on something, and as soon as I would sit in a chair, I’d just fall asleep right there.
The up side of that is I slept soooo good!!!!! Sleeping is a hard thing for me for a variety of reasons and medical issues. It is rare that I get a complete night of sleep. So, two nights in a row was like heaven!
The other good news is I seem to have adapted to the medication change and am not feeling queasy all the time anymore. I'm hoping to get back on track with my diet and exercise program. It was hard to even eat 800 calories a day when you constantly feel as though as you're going to be hung over the toilet at any moment. You'd think that would be good for a diet, but actually, if this goes on for weeks (as it did) your body goes into starvation mode. I also lost some conditioning because I wasn't able to exercise as much.
This week I'm sort of starting over. Last week I was feeling better, but also sort of felt like my system was readjusting its self. The good news is I didn't gain any additional weight. The bad news is I also didn't lose any weight last month either. I can't even tell you how frustrating that was and is. It wouldn't be such a big thing if I was working on this for appearance or general health, but in my situation, I'm on a deadline here!!!
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