Living on the frontlines

Inova Fairfax Hospital - my hospital It has been a year since I started pulmonary rehabilitation, and about nine months since I started the transplant work up process. I’ve finished all of the transplant tests, and everything came back just fine except my teeth. Go figure. I’ve almost lost all the weight I have to lose to be listed and expect I will be there by my appointment in Sept. Ideally, I will still have to lose more weight, but at least I’ll be able to be listed if they decide it is now time. I have a feeling they will. Sometimes I’m not sure if my take on symptoms is paranoia, or if it is accurate. I do feel like there has been some progression over the summer. My cough is worse. When my oxygen does fall, it takes longer to pop back up again. The dental stuff has turned into quite the saga. I need a root canal. Everyone knows I’ve never been an easy dental patient to start with, but now it is worse. It isn’t the dentist. It is me. When you know someone is ...

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 I...

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 transplan...

What a way to start a Monday morning! We have added four new HPSers to the patient registry. This puts us at 86 to go on the Hundred People Search (H.P.S.) 

Just when I thought the end was in sight of all the tests and specialists visits to try to be listed for transplant (at least for this year); we’ve hit another bump in the road. Thankfully, I am doing very well right now. Sadly, the complications are dental in nature. I hate the dentist. I’d rather have a lung lavage, or even a heart cath, than have dental work. I think it is because for those procedures they give you wonderful drugs. At the dentist, you get a shot which might mitigate some of the pain, but you are still aware of everything going on. You hear the drills. You smell the odors. You have to lie back in the chair (even if they don’t put it back all the way). I breathe better sitting up generally. I always seem to have sinus drainage that sticks in my throat. When they are working on my teeth, I feel like I can’t swallow and all that goo is choking me. Add to this some negative experiences at the dentist, and my anxiety about dentistry is sky high! My bleeding incident in Fe...

We have added another patient  to the HPS patient registry. This puts us at 89 to go on the Hundred People Search (HPS). 

This past weekend I was listening to NPR, as I usually do in the mornings. I was half awake, only partly understanding what I heard as I cuddled with Fin and slowly woke up. Scott Simon of Weekend Edition was interviewing the author of Imagine Me Gone, a novel with a theme related to the anxiety experienced by characters. The book is by Adam Haslett. Admittedly, I am not familiar with the book, or the author. Simon read an excerpt from the book as I rolled over to try to fall back asleep. Then, I heard a line that struck me between the eyes. It struck me so strongly that I had to get out of bed and go find paper to write it down so I wouldn’t forget it. Honestly, I can’t even remember what the excerpt was about. It was just this single line that seems to have penetrated my ears. “Anxiety is the relentless need to escape a moment that never ends.” Is it a definition of anxiety? I admit, I tend to lean a bit on the anxious side. It has never been a severe issue, as it is for so man...