I am so glad to be able to type that title! Pheresis just kicks my butt and when they add the bortezimib...I am wiped out! Dr. Zaas said yesterday that I looked puny. That really does sum me up!
Yesterday I had a clinic appointment and they did draw blood so I should have my antibody test results by the end of next week. Wow am I hoping and praying for good results.
The clinic appointment was the normal stuff... blood work, chest x-ray, PFT and ABG. My PFT (pulm function test) shows I've lost more lung volume. When we came to Duke my FEV1 was 39%. At the end of January it was 28%. Yesterday it was 18%. These are some of the reasons the docs (and Lee and I) are anxious to find lungs!
Actually, I've been sickly lately. I hate to say I've been sick because I want to kick whatever this is :-) Dr. Zaas gave me until this Saturday morning to get better. If not...back to the hospital. I think both Lee and I could find our way there with our eyes closed...we really will keep them open so Lee isn't added to the patient list! None of us really know what's going on with me. My PFT has dropped significantly and I am hugely short of breath (is hugely a word?). I often need to stop and rest when I'm walking from the bedroom to the kitchen in our apartment. That's getting really old to me.
I told Dr. Zaas that I'm not enjoying this one little bit. He wants me back in rehab as soon as possible - what a surprise :-) They don't want you away from the gym for any reason except hospitalization. I've been trying to get to the gym between treatments but some days it just didn't happen. Today I walked on the track with my walker. I did 5 laps (1/3 mile) in 20 minutes. That is an improvement over Tuesday's 4 laps!
Let's move to something more fun -- the sweltering weather. OMG it has been so stinking hot and humid here and it's affecting Lee even more than me! A couple of days ago Khara told me to just stay home because it was so awful out. The transplant coordinators have to walk about 1/2 - 3/4 of a mile from their offices to the Duke Clinic. It was Khara's turn at clinic and she said she was short of breath from her walk and she doesn't have lung disease! After about two weeks of these temperatures, it finally rained yesterday morning. That brought both the humidity and temperatures down - yay! Four days in the 80s. We're loving it!
We really are missing our friends and family in CA. It would be so great if we could make a trip back but right now I can't even consider an airplane and neither of us are up to another cross-country trek! We'd love for you to come out here!! I'm sure the weather would improve - didn't you say it got better Vanessa?
Well, all for now. Safe and Fun 4th to everyone!
Lee, Wendy and Missy