Back from Cleveland

So Mom, Cameron and I are all back.

After the power was knocked out Sunday night, it was good to get to leave. Just wish it was for better reasons, like a vacation to the Bahamas :) We took a bunch of our food to Teresa's though, so at least everything wasn't lost.

I've waited awhile for me to post about Cleveland because things were up in the air. I think I understand where I stand now... so here it goes...

Cleveland was just like the last time. Get there, blood work, chest x-ray, meet with the social worker again (she's now signed off on me, I'm mentally stable and ready to go through with transplant, haha), and then I met with Infectious Disease. Since CFers grow a lot of stuff, I've been meeting with people from ID for the last several years now. Nothing new was said by then, other than they were surprised that one of my bacteria was sensitive to Doxycycline. I guess it typically isn't, so I guess I can be thankful for that. Then I met with the pulmonologist. After reading my PFT, he stated that at this time I was too healthy for a transplant since I had a slight improvement from my last PFT.

I felt like the rug had been pulled out from under me. I had spent the last 3 months getting myself ready to tell them I was ready to get the transplant now only to have them tell me it's not time. Why can't we be ready at the same time?! The doctor then told me that they would discuss me at the next meeting, but I wouldn't be placed on the list until I was "presented" at one of these meetings. The meetings are held every Monday.

Now they've had the meeting (after much drama) and have decided that it would be best for me to continue with the testing. I have to do a barium swallow (replaces the esophogeal w/ manometry), I have to do the pH study but there's 2 options there (bravo or a small probe that goes up my nose and down my throat - both icky), and I have to have a right heart catheterization which is the test that will give me my placement on the list.

I will return to Cleveland in November and hopefully that'll be the time that they decide to list me. I just want to be listed and have that part of the waiting over with.

I'll keep ya posted