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Showing posts from June, 2016

Two years on oxygen

I realized this past weekend that it has been a little more than two years since I started using oxygen. Wow! The realization makes me anxious. It would be typical for an HPSer to be doing much worse than I am now doing. Sometimes I wonder if I’m doing as well as I think I am. Then, I start to feel panicked because if I’m not, I’m running out of time to get listed.

The month I went on oxygen I had three other HPS friends who had to start using oxygen about the same time. Two of them have passed, and one had a lung transplant. It really does make one feel as though one is on borrowed time.

The last few days I’ve noticed myself more breathless as I walk around my apartment – something I can usually do for two to three minutes on room air. In an apartment as tiny as this one, that’s plenty of time to put away laundry or go to the bathroom without wearing oxygen. In the apartment it isn’t so much that I need more oxygen – I just seem to need it sooner. When I have one of my coughing fits …

Second opinion

Update on the dental saga. Last week I went to Ryan and Sara's dentist for a second opinion. It is amazing how many people told me I should do that. I'm glad I did. The second dentist doesn't think I need the oral surgery. The more I thought about it, the more I was questioning this part. My grandmother has the same tooth that never came through (probably another genetic thing). She is 99 and it has never caused her a problem. I do need the other work. 

Finances are so stressful just now. Every time I turn around there's another bill, another hoop I have to jump through, another thing that is out-of-pocket and not covered by insurance. 

I'll be okay with the dental stuff. I will simply have to use my transplant fund money. I can't thank all of you enough who have donated to this fund, held fundraisers etc. You have no idea how important and how helpful your efforts have been through this process. 

No dental work means no transplant, so it's a transplant expens…