Wednesday, July 16, 2014

If you need a lung transplant, why are you walking so much???

This is a question no one has actually asked me directly, but given a few comments, I think some of you are wondering.

I’ve been working really hard lately at walking as much as I possibly can. I’ve been posting the walks to my facebook page. The encouragement I have gotten from friends and family actually is pretty motivating.

I think some, however, wonder how it is I can walk three or more miles and need to move to get a lung transplant.

Let me clear that up for you! Grin!

For starters, I don’t need the lung transplant tomorrow. The issue is that my lung function has fallen enough that there isn’t as much “wiggle room” before advancement in my disease will cause me to need a lung transplant. As I’ve learned lately, moving is NOT EASY – especially when you haven’t done it in 12 years. Getting listed as a person with Hermansky-Pudlak Syndrome involves not just the many medical issues, but also lots of social support issues and services. If I were sicker, it would be harder to have the energy to move and to get established in my new location. Setting up all of those services etc. just takes time.

The other issue boils down to use it or lose it. I am really hoping that my disease stabilizes again for a few years, as it has done before. I can’t bet on it though. My doctors have told me the best thing I can do is exercise as much as I can so that if my lung disease progresses, I can do more with less, sort of speak.

Lastly, I have to lose weight before I can be listed, even if I needed the transplant tomorrow. I am working on that, but if it were easy I would have done it years ago.

It cracks me up that docs said to me, “You need to start trying to lose weight.” Really? That thought, as a woman in this culture, never occurred to me. I’ve never tried that. Great idea! Geesh.

The good news is my thyroid issues are good right now. My energy levels are better than they’ve been in a while (I’m thinking the change in medications as well as the oxygen.)

For quite a while I’ve been worried and puzzled by the fact that when I exercised, I never built up a tolerance for it. It never got easier as it is supposed to do. Now, I am seeing that I am building up some exercise tolerance. A walk that used to make me quite tired is now easy.

I am also tracking my calorie intake and burning quite carefully. I’m a big fan of the apps. MyFitnessPal and MapMyWalk. I think they should make me an advertisement! Grin!!! Well, I guess since I post it to facebook, I already am advertising for them. Grin!

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