In my last post I was tossing around the idea of moving back home to Ohio with my parents so that I can meet with the doctors in Pittsburgh and come up with a plan to either fix my lungs or get on the transplant list.
Well, I took that plunge and I’m now sitting in the basement with sweatpants, long sleeves, a heater and a blanket wrapped around me.
I don’t belong in the cold.
This ended up being completely last minute. I had a doctors appointment in Miami a week ago and found out my lung function is at 27%, the lowest it’s ever been. So, by the next day, my parents and I had plans to temporarily move me back to Ohio and drive up so that I could have Bailey (my husky) with me.
After a little two day adventure in the car, here I am!
The trip up wasn’t so bad. We took all my meds so that I could do breathing treatments in the car. Most of the medical equipment companies think ahead now and send their equipment with travel bags and containers to make life easier. We just had to be careful with the refrigerated meds to make sure they would stay cold and bring batteries for the nebulizer to be portable.
Notes to remember when driving from Florida to Ohio
- Say your prayers and then put a death grip on your steering wheel when you’re on Virginia’s turnpike and they somehow consider it safe to tell you to go plummeting 70mph down steep, curving hills (paved cliffs)
- Georgia and South Carolina do not believe in Panera
- Don’t hold out on eating for 7 hours through North Carolina, Virginia, West Virginia and Ohio just to find a Tim Hortons, thinking the GPS is lying to you. You will not find one.
So here’s my current plan.
I still would love to find a way to fix my own lungs, but if my lungs feel that 27 years is a good enough run then I’ll have to work around that.
I have an appointment in a month to meet with the doctors in Pittsburgh, but I’m having so much trouble breathing that I’m not really sure I’ll make it that long (that’s the soonest they could get me in).
I would probably go to the ER this week to get back on IVs, but today is actually my birthday and all I want to do is go to Pittsburgh this weekend with my best friends to see the giant rubber duck on the river. They even got me a wheelchair just in case 🙂 I hate wheelchairs, but I’m determined to see that duck.
So today I emailed my doctor to get some prednisone steroids and oxygen to hopefully make me feel good enough to get through the week for my birthday wish. At that point, I will give in and go get back on IVs. Hopefully while I’m in the hospital I can meet the CF doctors and figure things out from there.