Tuesday, April 12, 2011

Free at last

Yesterday Julie sent me a text while working that said: "So my PFT's were 76% (FEV1)! Dr. Cahill said I look fabulous! She wants me to discontinue my antibiotics: Meropenem, Ciprofloxacin, Azithromycin, and Bactrim. I got labs today and I show negative on any infection. I jogged today [for the first time] and it felt good. My white blood count is a little low so they want me to discontinue the Imuran (anti-rejection) [for now]. I kind of have the shakes because of it. So I'm getting a blood draw again on Friday. So far so good. I'm discontinuing my Lasix pill as well (water pill). My weight is back to base line."

She was giddy when I called her after my lunch appointment. I could hear her giggling about not having the Meropenem. In case you don't remember, it was a 24 hour infusion that went into the port in her arm. Consequently the tubing would get caught all the time on the hardware in the kitchen while doing dishes or preparing food. She had to shower with it, go to the bathroom with it, ride in the car and slam the tubing in it etc. Naturally she called it her ball and chain. When I came home the first thing we did was de-access her port (pull it out after flushing it). She was a new woman! She is free from all tubes for the first time since she was around 20 years old! She was up for a walk and here is what we did:


  1. you've been doing mero since you were 20 constantly?

  2. No; She was on Mero since the surgery. She had O2 since she was about 20. She is free from all tubing.

  3. I just got back from book club. My girlfriend was talking about her sister-in-law with CF. I excitedly told about my cousin with CF who just got a lung transplant. Before I could finish the details she said,"Oh, I saw her news story, didn't she have her sister-in-law carry twins for her?" Small world huh. We noticed a big difference between how different people handle the disease. We have both find you and your family inspiring. Love, Jenny L M.

  4. So glad things are going well! You have been in my thoughts and prayers!
    Margaret Sargent