Jeepers Creepers - What's taking so long?

Hello everyone,

The burning question is, "What's taking so long?" A lot of people have been approaching me with, "When are you going to have your transplant?, "Have you had it yet?, "Are you going to get it soon?" Well, my blog update tonight is going to answer these questions....

Many of you have heard me talk about a particular number....it's from a breathing test I do. If you did the test, more than likely, it would be 95-100%. When my test is consistently at 32%, that's when things start "rocking and rolling"....

This number - it normally gets lower and lower, slowly but surely over time. But once in a while, a CF patient might have a "dip" in the tests; all of a sudden they drop significantly and the only explanation is progression of the disease. ...about three and a half years ago, I was at 49%. And inside of two and a half months, all of a sudden, I dropped to 38%. This was indeed chalked up to progression. And it was because of this drop, I was on oxygen for the first time, I started this campaign and I became very public about my disease.

Cystic Fibrosis is very unpredictable. It has over 1500 genetic combinations, and counting! This does not help scientists come up with a cure any easier! Anyway, fast forward to the present. I know a lot of you wonder about the campaign and the lungs...well, right now, my lungs are at 37%. They have dropped 1% since starting the campaign!

What????? ONE PERCENT?????.....YEP!!!!

So, THAT is what is taking so long....it's good and bad...it's obviously good I am not feeling as crappy as I could be feeling; but that also doesn't qualify me yet for transplant.

I have recently been fighting back to back infections. This has put me on oxygen again; I don't do my breathing tests again until mid-October to know where they stand. I have started an exercise program (and hating every second of it!!) and hopefully that will help. Really, truly, the best thing we can hope for is this degredation taking a LONG time. It may not be ideal; but it is what is best.

And come the day when tests go down again, I'll get the evaluation to get on the list, get my new lungs, and start the next chapter of my life. But for now, I am stuck with these crummy ones I've got. In the spirit of my doctor's words, "It's good to keep my own parts as long as possible!"

Thanks for sharing

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