Thursday, May 1, 2014

Down The Rabbit Hole I Go

I have found myself in a place that makes no sense at all. It all seems to get "curiouser and curiouser" in the worst kind of way.

Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:

After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50.  So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:

Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs

And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.

 We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.

We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.


  1. E, I am SO SORRY! That is the most frustrating feeling in the world, and I can't imagine how scary it would be to have gotten so low so quickly. I'll be praying for you. I really hope you guys can get it under control!

    1. Thanks for the prayers. Amazing how quickly life can change. Hoping I say that about a positive change soon.