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  1. J

    CF related diabetes

    Hi all....I was diagnosed with CFRD last September. When I initially saw my endocronologist for the 1st time, my a1c was 5.8. But I didn't see her until close to 2 months after diagnosis. I had already changed my diet somewhat by that time. And I do realize that a1c in cf is artificially...
  2. J

    Exercise

    This may be a stupid question but I'm curious...My transplant team wants me exercising which I am doing but I absolutely hate it! I walk on the treadmill 5 days a week and I do it first thing in the morning to get it out of the way but I just can't seem to get to a point where I don't feel like...
  3. J

    FEV1 and Oxygen needs

    Hi everyone My lung function has been hovering between 20-24% for the last couple years. I started the process of testing for a lung transplant in August of 2015 at which time I also started the Orkambi. In December of 2015, they determined that I was still too well for transplant but wanted...
  4. J

    Kinda crazy question

    I am just wondering if anyone here as every noticed that if you over due it, you will run a low grade fever. I have had this pattern since December. If I do too much, I start running a low grade fever. The first time this happened I baked cookes about a week before Christmas and got really...
  5. J

    Side Effects from Intravenous Tobra

    I know that the tobra can affect your kidneys and your hearing, but I was curious can it cause you to have an "instability"? It is hard to describe, I don't feel dizzy but I just don't feel right. I don't even really feel out of balance but I get this feeling, more so when I am driving in a...
  6. J

    Heart Palpitations

    I am wondering if anyone here has a something called "PVC" or premature hearbeat. I have been having this fluttering feeling and feel the need to take a deep breath. I went to the ER and they hooked me up to a heart monitor and did an ECG. They said I was having a premature heartbeat. They...
  7. J

    stomach pain

    Hi all! I have been considered pancreatic sufficient. I have no problems keeping on weight, as a matter of fact, I gain quite easily. However, I have been having abdominal pain for the past 10 years. It has gotten progressively worse. I am at my witts end trying to get a correct diagnosis...
  8. J

    MRSA

    I am wondering if anyone here knows if the Methicillin Resistant Staph is more contagious than other bugs besides the cepacia? I have cultured it and I am just curious because my sister also has cf and I don't want to pass it to her. Thanks. Julie 39, w/cf, burkholderia gladioli, mrsa
  9. J

    Crohn's & CF

    I was recently diagnosed with Crohns disease. It took 10 years to get a correct diagnosis. My gastro started me on pentasa a little over a month ago. I was doing good until Monday. I am having another flare up. I went back to see him today and now he wants to start me on another medication...
  10. J

    How long...

    I went in the hospital on Jan 19th for 4 days and finished out the rest of the iv antibiotics at home. I finished them up on Feb 9th. Last Mon. (2/5) I called my nurse to let them know that I felt better but the color of the sputum had gone from clear to yellow (even though I was currently on...
  11. J

    Side effects from Tobramycin

    I am wondering if anyone has had similar side effects from the tobramycin iv. The other night I woke up about 2 a.m. because I thought I heard something in my sons room. I walked down the hall, checked on him and walked back to my room. When I got to back to my door, I started feeling dizzy...
  12. J

    In the hospital

    I see my sister posted that I was admitted to the hospital so I thought I would give a little update. They did the chest x-ray and sputum tests yesterday, however, the dr. that came in this morning said they were having trouble with the computers and weren't able to get the x-ray yet. As...
  13. J

    Understanding Sputum Test Results

    I was wondering if anyone understands the numbers on the sputum test results when they test for susceptibility? From mine: Levofloxain 0.25 susceptible, Cefazolin <=4 Susceptible, Gentamicin 16 resistant, Cefepime 64 resistant. I am wondering on the susceptible ones it the higher the number...
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