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  1. M

    Anyone with Mutation 3849+10kbC-T

    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 recent years and they still suggest no CF. I'm mainly mentioning his if they decided to do a...
  2. M

    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:
  3. M

    long term linezolid

    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 treatment. I had my feet tested and they determined the numbness was within normal range...
  4. M

    Husband in the hospital for the first time at age 30.

    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 hopefully, the treatments will help your husband to get his lung function back up in 10 days to two...
  5. M

    Is there anything against Abscessus when Tygacil, Amikacin etc have failed?

    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 infection. I'm on Cefoxitin IV, Amikacin IV, Clofazimine and Cipro. You didn't mention Lenezolid in...
  6. M

    Traveling Abroad

    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 IV meds carrying a bag full of saline syringes, IV medication, tubing, etc. Once I show the...
  7. M

    Help with constipation

    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 doctor to get their opinion on increasing your Miralax.
  8. M

    Treatment for the mildly diseased

    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 years and my life has changed a lot -- not in a good way. Considering your long-term health and...
  9. M

    Canadian Health Care System

    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 and have helped me tremendously. They've gotten me into specialists and tests in a reasonable...
  10. M

    Just found out daughter has Mycobacterium Abscessus

    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 would encourage monthly hearing tests while your daughter is on it. I have had hearing damage...
  11. M

    first time on IVs

    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 your case. I often lose my appetite and feel exhausted when I'm on IVs. Amikacin can mess with...
  12. M

    Possible CF (input please)

    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 test within the last 10 years as part of a research test. That result was 33 -- a negative result...
  13. M

    really sick guys in hospital

    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 ultimately the cause of my steep decline. My hospital stay ended up lasting 6 weeks, and it took me a...
  14. M

    Hoping this isn't my new normal...

    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 normal life for several more years. I had my first tune up at age 36, but didn't have another one...
  15. M

    Anyone use Spiro PD?

    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 tell by the percent if it's gone up or down, but I prefer to go by litres. I'm lucky in that I...
  16. M

    Anyone use Spiro PD?

    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 high or low by a certain amount, that would be fine, but that's not the case. To give an example...
  17. M

    First Time Getting a Port - Looking for Info

    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.
  18. M

    First Time Getting a Port - Looking for Info

    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 PICC lines for the past 4 years, but they've only been lasting about 2 months at a time for the...
  19. M

    26, just diagnosed, advice/input/kind words welcome.

    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 were my main concern initially. I have seen others on this site that, like you, have the GI...
  20. M

    First PICC line ever -- panicking

    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 well enough, you should definitely be able to work with a PICC line. Long sleeve or half-sleeve...