one day at a time . . .

March 22, 2010

I have never blogged before. But I feel that I need a place to express what I’m going through while being anonymous. I can’t share everything I go through with my friends and family because I pride myself in staying positive. Should I show my insecurities it will only worry them and I cannot do that. So, today I start my blog to the word who doesn’t know me. Over time I will share my story. But right now I’m depressed and scared. I’ve had problems since October of 2008 and it’s been such a struggle. As I get better – it’s great – then I relapse. And I just relapsed again…..

Had a discussion with my doctor last night – we will be trying some more things, however she kind of tried to prepare me that I may have lost more lung function permanently and brought up to possibility of placing me back on the double lung transplant list as a safety backup.

This is VERY SCARY to me! I know that the statistics after transplant are not good for lungs and I just don’t want to go through that.. And it’s not just the possibility of transplant that scares me… If my breathing doesn’t improve, I can’t imagine dealing with this every day with no relief in site… I know I’ve made it 20 years without losing lung function. But I’m down to 40% now – and that sucks!

Comments on: "March 22, 2010" (2)

  1. I’m trying to get back up to 40%, actually. The doc has threatened putting me on the list twice if my function didn’t improve by my next visit, but it always does. I think my 2-year high is 38% FEV1, but I’m going full-bore for 50-60% with exercise and added body weight.

    • oh… I hear ya! My baseline is 48% – but haven’t seen that in almost 2 years – last week it was 43% – which was up from 40% – she also mentioned the transplant list… I hate it – so scary – don’t want to go there! Hoping we both improve and soon!

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