I have a lung update for you all. I had a check up yesterday and Lindsey came with me, which was really nice and fun. We have a fun time gossiping in the car, we stopped for lunch and pedicures on the way because we made amazing time and actually had to kill some time - shocking. I know a place that seriously does the most amazing pedicure of all time. Lindsey agreed. I did all my usual tests, blood work, x-ray, pfts. The good new is my pfts are stable at 33% and my weight has been stable at 83-84 lbs for a few months now. We had a really good visit with my doctor we had lots of laughter during our house long visit. There was a down side of the visit but I knew it was coming because I've been through this already, but it's time for oxygen when I am exerting myself: doing my daily walk, walking up stairs, showering, things like that. I mean really the only time I am really comfortable is when I am just sitting, obviously that is when my lungs bother me least because I'm not really doing anything to annoy them. So this week oxygen will be delivered, but at least I think it will give me some relief. We also agreed if I hit any weight under 80 lbs I have to agree to get a feeding tube, but I think I talked her into having my lung surgeon do the procedure if it needs to be done because that would make me fight it less. But hopefully I can stay where I am, but unlikely the more lung function I lose so I just have to keep eating. And I went up my anti anxiety meds because you know getting oxygen clearly gives me some anxiety knowing I am getting worse, so hopefully that helps.
And the journey continues....
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