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Type: Posts; User: MichaelL

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  1. Replies
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    I was diagnosed with CF at age 34 using a DNA...

    I was diagnosed with CF at age 34 using a DNA test. I have this mutation and DF508. I had been given sweat tests as a child and they indicated that I did not have CF. I have had sweat tests again in...
  2. Doctors save woman's life by removing her lungs

    This sounds like it could be an exciting new option for people waiting for donor lungs: http://globalnews.ca/news/3204018/doctors-save-ontario-womans-life-by-removing-her-lungs/
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    I have CF and m. abscessus. I have been on...

    I have CF and m. abscessus. I have been on long-term Lenezolid on two occasions. The first time I was on 600 mg once a day. After about 11 months, I started to have neuropathy in my feet so I stopped...
  4. I was 36 when I had my first hospital stay. My...

    I was 36 when I had my first hospital stay. My next hospital stay was five years later, so this isn't necessarily the beginning of a trend. Results vary by person and the type of infection, but...
  5. I'm sorry to hear about your problems. I've had...

    I'm sorry to hear about your problems. I've had abscessus for seven years and it's greatly affected my health. My current cocktail keeps me out of the hospital, but doesn't actually kill the...
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    I would get a medical letter from your doctor...

    I would get a medical letter from your doctor that states you have CF, lists your medications and notes things you will be carrying (e.g., air compressor, nebulizer, etc.). I have travelled while on...
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    I take a dose of Miralax in the morning and a...

    I take a dose of Miralax in the morning and a dose and a half in the evening. I also take 45 ml of mineral oil. I've tried to drop this level of dosage and I end up constipated. I would talk to your...
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    I have mutations that indicate a mild form of CF....

    I have mutations that indicate a mild form of CF. I wasn't even diagnosed until I was 34. That said, my health has really deteriated over the last seven years. I have now been on disability for a few...
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    I live in Toronto, Ontario. I am very happy with...

    I live in Toronto, Ontario. I am very happy with my care and would be hesitant to move somewhere else. The CF doctors, nurses and other members of the team are outstanding. They are very knowledgable...
  10. I'm sorry to hear about your daughter's...

    I'm sorry to hear about your daughter's diagnosis. I caught m. abscessus in 2008 and have been dealing with it since.

    The IV Amikacin is much more effective than the inhaled version. However, I...
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    Leah -- sounds like a very stressful experience...

    Leah -- sounds like a very stressful experience for many reasons.

    I've been on both of the meds that you're taking. They can really wipe you out, especially if you haven't taken them before as is...
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    I was tested as a child and determined to not...

    I was tested as a child and determined to not have CF. When I was 34, I received a genetic test that showed I did have CF. Although my childhood results were destroyed long ago, I was given a sweat...
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    My lung function dropped from mid-40s to around...

    My lung function dropped from mid-40s to around 30 a couple years ago. It was a scary and difficult time in my life. I was already undergoing treatment for mycobacterium abscessus, which was...
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    I was actually diagnosed at 34, so I hadn't done...

    I was actually diagnosed at 34, so I hadn't done any treatments up until then. At the time, my lung function was lower than yours is now. I started the treatments, but continued to live a pretty...
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    I think the reason they only show one decimal...

    I think the reason they only show one decimal point is because the main screen is crowded. However, when you look at the information in detail, they could have shown the extra decimal place. I can...
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    I bought one of these almost two years ago. I've...

    I bought one of these almost two years ago. I've not been entirely happy with it. First and most important, it doesn't seem to track with my spirometry results at the clinic. If it was consistently...
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    Jim -- thank you for your thorough and thoughtful...

    Jim -- thank you for your thorough and thoughtful reply! This answer my questions so I have to give it more thought. I suspect I'll finally get a port in the next few months.
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    Hail2Pitt -- I saw on another discussion that you...

    Hail2Pitt -- I saw on another discussion that you have grown to like your port. I was wondering if you could answer some questions now that you've had more experience with your port. I've been using...
  19. Cystic fibrosis can take different forms...

    Cystic fibrosis can take different forms depending on a person's mutations. I was diagnosed at 34 after months of lung infections that wouldn't clear up. I am pancreatic sufficient, so lung issues...
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    I've had a lot of PICC lines over the years and...

    I've had a lot of PICC lines over the years and have had one in my arm for the past four years. My comments are going to be similar to the ones above, but I just wanted to chime in as well. If you're...
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    MomtoprincesswithCF -- I was told that I should...

    MomtoprincesswithCF -- I was told that I should not expect to ever be culture negative. It does happen, but I think it's rare. That said, I've always been told that if I ever get to negative smears,...
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    Chrissie -- I didn't think about it until I saw...

    Chrissie -- I didn't think about it until I saw Hail2Pitt's comments above, but I have similar experiences. At night, I usually can't sleep under a quilt or blanket because I get too hot. I'm not...
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    My sweat tests are negative, but I was diagnosed...

    My sweat tests are negative, but I was diagnosed with CF by genetic testing. Some less common mutations produce negative sweat tests. Generally, these are more mild cases. It's good that you are...
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    If anyone is interested, here's a TV interview...

    If anyone is interested, here's a TV interview with Dr. Stephenson talking about this study:...
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    I haven't noticed a difference between coughing...

    I haven't noticed a difference between coughing up more or less when I'm on my NTM meds, although I have been on them for a long time now. I have had M. abscessus progress while I was on treatments,...
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