Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can.

The fact that I’m back to “baseline” with my lung functions, even though they are still in the 30 percent, it’s good that I can hold steady where I’m at.  My nurse practitioner said keep doing what you are doing.  Considering I was at the beach just 2 weeks ago, I think that means I need to go back to the beach often!  Now to figure out how to make that happen financially and to have the time.  Although I did need almost a week of recovery time from the beach but it was well worth it.

With all that said, I could be in the 30 percent for awhile which is a good thing because it would mean that I am holding steady.  On the other hand, it means that I am not moving closer to transplant at a rabbit speed but more like turtle speed at the moment.  Which is a good thing and a bad thing in a way…in my crazy brain.  It’s good that I am maintaining so that I can get the most out of these crappy lungs before needing new lungs.  The bad side is that it is scary that I have to get more sick before needing/getting new lungs.  The aftermath of transplant isn’t always pretty which I pray that my post transplant life is easy peasy.

Once I’m listed for lung transplant we have to plan for all the important stuff like me being closer to St. Louis or using the flight service that will fly us to the hospital when I get the call.  Then I will have to stay in the St. Louis area for at least 3 months post transplant to be close for all the follow-up care.  Hence the reason for all the fundraising.  We will have to cover 2 households for at least 3 months if not more.

On top of all of that, my husband is retiring from the Air Force in December, well his ceremony will be in December and his actual retirement date is March 1st, 2018.  So I’m a bit nervous about the transplant process now as he will be at a new job and possibly not have PTO time to spend with me which he will have to use FMLA which you don’t get paid for…hence the fundraising!  It allows you to keep your job, they can’t fire you for taking the time off so you can keep your job.  With that said, I’m nervous because it will be a new job for my husband and I don’t want to jeopardize anything with his new job.  I don’t know how “new” it will be by the time transplant comes but never mind that, my anxiety gets the best of me. My husband may not be able to be with me the whole time which means I must have other caretakers lined up.  It is a lot to process and digest and it’s scary!

Until next time…

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