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  1. J

    B cepacia symptoms

    Wow, I know this is off topic, but has your husband's father had issues with his sinuses all of his life? I ask because it isn't common to grow out cepacia, when I grew that out, my primary doctor went looking for causes and started testing me for CF....I was dx at 33. He is at least a...
  2. J

    White Blood Cell Count

    I believe it is from chronic inflammation, our bodies are always fighting infections constantly so an elevated white count would make sense. The only time my doc gets worried is if it is accompanied by fever, other signs of exacerbation (increased cough, feeling tired, more short of breath etc)...
  3. J

    White Blood Cell Count

    I believe it is from chronic inflammation, our bodies are always fighting infections constantly so an elevated white count would make sense. The only time my doc gets worried is if it is accompanied by fever, other signs of exacerbation (increased cough, feeling tired, more short of breath etc)...
  4. J

    Can smell the bacteria......

    You're right, no amount of mouthwash etc covers it up.....I hate getting too close to people, especially when speaking etc because it just seems so potent at times, especially when it is close to cleanout time. It's probably not as bad as it seems to me, but still....I am sure it does smell...
  5. J

    Can smell the bacteria......

    You're right, no amount of mouthwash etc covers it up.....I hate getting too close to people, especially when speaking etc because it just seems so potent at times, especially when it is close to cleanout time. It's probably not as bad as it seems to me, but still....I am sure it does smell...
  6. J

    Can smell the bacteria......

    I know there are others out there who experience this....of late, I have been able to "smell" the bacteria in my lungs. I often wonder if anyone who is near me can smell what I smell and am sometimes a bit self conscious about it.. There really isn't anything I can do to hide it short of bathing...
  7. J

    Can smell the bacteria......

    I know there are others out there who experience this....of late, I have been able to "smell" the bacteria in my lungs. I often wonder if anyone who is near me can smell what I smell and am sometimes a bit self conscious about it.. There really isn't anything I can do to hide it short of bathing...
  8. J

    Surprising results

    My insurance picked up my pulmonary rehab, I have Medicare....they did not even blink, they paid without any issues. I have been through rehab at least 3 rounds, all my doc had to do is refer me and that was it. It does help, like Joni, I experienced very significant results, all positive. It is...
  9. J

    Surprising results

    My insurance picked up my pulmonary rehab, I have Medicare....they did not even blink, they paid without any issues. I have been through rehab at least 3 rounds, all my doc had to do is refer me and that was it. It does help, like Joni, I experienced very significant results, all positive. It is...
  10. J

    CF Pharmacy or Medicare Part B

    I use foundation care and have had no problems with them and I have Medicare as my primary (parts B and D)....maybe you'll have better luck with them! Glad you finally were able to go to Colorado for your work up, can't wait to hear the details! Jenn 40 wCF
  11. J

    CF Pharmacy or Medicare Part B

    I use foundation care and have had no problems with them and I have Medicare as my primary (parts B and D)....maybe you'll have better luck with them! Glad you finally were able to go to Colorado for your work up, can't wait to hear the details! Jenn 40 wCF
  12. J

    Testing beyond OGTT?

    I was also one of those people who passed my OGTT but am diabetic. I tested my sugars several times a day to establish a pattern and there were times I was running very high and then I too would crash. First I was put on Prandin, an oral hypoglycemic and my sugars still were difficult to...
  13. J

    Testing beyond OGTT?

    I was also one of those people who passed my OGTT but am diabetic. I tested my sugars several times a day to establish a pattern and there were times I was running very high and then I too would crash. First I was put on Prandin, an oral hypoglycemic and my sugars still were difficult to...
  14. J

    arm vs chest port

    I have had two chest ports and prefer them there because I can access it myself. I think it would be hard to do if my port were located in my arm as you need two free hands to insert the needle, one hand to hold the port still and the other to put the needle in. I honestly love mine, no more...
  15. J

    arm vs chest port

    I have had two chest ports and prefer them there because I can access it myself. I think it would be hard to do if my port were located in my arm as you need two free hands to insert the needle, one hand to hold the port still and the other to put the needle in. I honestly love mine, no more...
  16. J

    Surprising results

    I have heard of that kind of testing on athletes....not sure of the name either lol. But I am glad it yielded some info for you....My pulmo said the same thing to me, that I am doing better because my body found a way to compensate, even if it is still inefficient, it was better than it was four...
  17. J

    Surprising results

    I have heard of that kind of testing on athletes....not sure of the name either lol. But I am glad it yielded some info for you....My pulmo said the same thing to me, that I am doing better because my body found a way to compensate, even if it is still inefficient, it was better than it was four...
  18. J

    Surprising results

    Wow....that must have been quite a shocker for you! I have FEV's in the low 30's, sometimes 20's and I know some of that is because I physically cannot blow out with force because of my diaphragm. I have a weak diaphragm due to a myopathy of sorts and that definitely contributes to my low FEV's...
  19. J

    Surprising results

    Wow....that must have been quite a shocker for you! I have FEV's in the low 30's, sometimes 20's and I know some of that is because I physically cannot blow out with force because of my diaphragm. I have a weak diaphragm due to a myopathy of sorts and that definitely contributes to my low FEV's...
  20. J

    Oxygen Concentrator Question

    I would have someone from the rental company come out and check it to make sure the concentrator is accurate, they have a device that does just this. I think it has to read at least 96% accuracy....that is what my DME company requires, it could be different with yours . I too have a...
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