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  1. I

    I want to know what percent of CFers work

    I am 27 and my FEV is around 60%, but were in the 40%s for years. I have always worked full time and find that I do better when I have the structure of work. When I am on summer break I rest more, but I find the lack of structure makes it harder for me to get all my treatments in, enough food...
  2. I

    I want to know what percent of CFers work

    I am 27 and my FEV is around 60%, but were in the 40%s for years. I have always worked full time and find that I do better when I have the structure of work. When I am on summer break I rest more, but I find the lack of structure makes it harder for me to get all my treatments in, enough food...
  3. I

    chemical burn?

    I agree with the others that it is probably an allergy to either the tagaderm or the cleaning agent. The last PICC the blisters oozed so badly that the dressing literally fell off. Yuck! When your PICC comes out wait a few months (if you can- not sure how often you get PICCS) and test the...
  4. I

    chemical burn?

    I agree with the others that it is probably an allergy to either the tagaderm or the cleaning agent. The last PICC the blisters oozed so badly that the dressing literally fell off. Yuck! When your PICC comes out wait a few months (if you can- not sure how often you get PICCS) and test the...
  5. I

    Wanting to conceive

    I am 27 years old and 14 weeks pregnant. I too am surprised at the lack of support from your doctor. I know that my doctor considered a lot of other aspects besides PFTs when deciding to support me in a pregnancy. I was told PFT stability (which it sounds like you have), nutritional health...
  6. I

    Pseudomonas treatment

    Pseudomonas is something you really want to keep under control. I used to try to be on the cautious side, but live and learn. I would often start on a low dose only to realize I didn't get quite get back to baseline. Over time I started to see a slow decline. I finally decided to get very...
  7. I

    Pseudomonas treatment

    Pseudomonas is something you really want to keep under control. I used to try to be on the cautious side, but live and learn. I would often start on a low dose only to realize I didn't get quite get back to baseline. Over time I started to see a slow decline. I finally decided to get very...
  8. I

    Pseudomonas treatment

    Pseudomonas is something you really want to keep under control. I used to try to be on the cautious side, but live and learn. I would often start on a low dose only to realize I didn't get quite get back to baseline. Over time I started to see a slow decline. I finally decided to get very...
  9. I

    VX770

    I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will...
  10. I

    VX770

    I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will...
  11. I

    VX770

    I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will...
  12. I

    CAYSTON/Pregnant

    First off, congrats on your pregnancy! How far along are you? Although Cayston in the inhaled form is relatively new it was developed from an IV that has been around for a long time, Aztreonam. My doctor told that Aztreonam, the IV version of Cayston, is well tolerated and considered safe as...
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    Does taking a '-mycin' drug affect your menstrual cycle?

    I have never had a med affect my menstrual cycle, but being sick has! I once skipped a whole month and went to the doc worried something was wrong (I am normally like clock work) and she informed me that being sick, stress (which often accompanies being sick), big changes, even vacations can...
  14. I

    Anyone been at 30% for a year or more and managed to turn it around?

    I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21...
  15. I

    Anyone been at 30% for a year or more and managed to turn it around?

    I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21...
  16. I

    Anyone been at 30% for a year or more and managed to turn it around?

    I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21...
  17. I

    Retirement Money?

    Good question! I also work for a school district and so 7% of my check goes to retirement each paycheck, but I know I will not be able to teach until a normal retirement age especially since this is my second career and so I already started late. I have no words of wisdom, but would love to hear...
  18. I

    Retirement Money?

    Good question! I also work for a school district and so 7% of my check goes to retirement each paycheck, but I know I will not be able to teach until a normal retirement age especially since this is my second career and so I already started late. I have no words of wisdom, but would love to hear...
  19. I

    Retirement Money?

    Good question! I also work for a school district and so 7% of my check goes to retirement each paycheck, but I know I will not be able to teach until a normal retirement age especially since this is my second career and so I already started late. I have no words of wisdom, but would love to hear...
  20. I

    TOBI podhaler

    Ugh! I agree about it having too much powder for one dose. Yuck, but for people who can handle it it will save a lot of time.
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