Meeting with the transplant doctor...

Last week Rachel, her parents, and I went down to John's Hopkins for PFT's and meetings with both her CF doc and the transplant doc. Her lung function is up by 11% (to almost 36%) after being hospitalized 3 weeks ago. Her weight is also back up (thank you, Oreos) and she is feeling a little better.

The first meeting was with the transplant doctor who discussed the timing of everything. Rachel isn't sick to the point where she needs new lungs tomorrow, but she's constantly on IV's and high doses of steroids and we're all concerned about the toll that is taking on her body. The doctor thinks that we need to finish up the remaining evaluation tests/shots and get her lung allocation list score. He'll then present her case to the transplant team and they'll decide to put her on the list. We won't have a better idea until we get her allocation score, but it sounds like it'll probably happen before the end of the year.

The second meeting was with her amazing CF doctor. He is giving her a break from IV's for a bit while she continues on Cayston (a med that keeps you well between IV's). When she starts to feel bad again, she'll go back on. He basically wants to get her better and keep her well while we wait for the transplant. He is very encouraging and has high hopes for Rachel's transplant. It's all so heavy, but we know it's what's best for Rachel.

To make things more stressful though, Rachel's sister (also with CF) is in the hospital where she goes to college out in Chicago. Her enlarged spleen is causing arterial blockage resulting in a lot of abdominal pain. Please keep her in prayer as well...

Yesterday was me and Rachel's 2 month anniversary of marraige. Even with everything that's going on, I still swear it's been the best 2 months of my life. All of the tough things we've been through have only strengthened our relationship and our faith in God. We know that He has us and that there's not a single thing that happens to us that's not part of His plan. 


- Jonny