Cystic Fibrosis Forum (EXP)

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  1. E

    Daily Symptoms of CF

    There's a good chance his enzyme or maybe dosing needs to be increased. I increased my enzyme intake over 20 years or so and now am way over the recommended dose limit, but it works for me. Any less and I have problems. He should talk to his doc or a GI specialist about it. Were his surgeries...
  2. E

    Daily Symptoms of CF

    There's a good chance his enzyme or maybe dosing needs to be increased. I increased my enzyme intake over 20 years or so and now am way over the recommended dose limit, but it works for me. Any less and I have problems. He should talk to his doc or a GI specialist about it. Were his surgeries...
  3. E

    Daily Symptoms of CF

    There's a good chance his enzyme or maybe dosing needs to be increased. I increased my enzyme intake over 20 years or so and now am way over the recommended dose limit, but it works for me. Any less and I have problems. He should talk to his doc or a GI specialist about it. Were his surgeries...
  4. E

    Leaving a child alone in the hospital

    It seems times have changed. I'm a 34 y.o. adult with CF who spent a fair amount of time in the hospital as a kid. And I have a somewhat contrary experience. This was in the days before cross-infection was even thought of. A lot of us CF kids would share rooms, we'd play together in the...
  5. E

    Leaving a child alone in the hospital

    It seems times have changed. I'm a 34 y.o. adult with CF who spent a fair amount of time in the hospital as a kid. And I have a somewhat contrary experience. This was in the days before cross-infection was even thought of. A lot of us CF kids would share rooms, we'd play together in the...
  6. E

    Leaving a child alone in the hospital

    It seems times have changed. I'm a 34 y.o. adult with CF who spent a fair amount of time in the hospital as a kid. And I have a somewhat contrary experience. This was in the days before cross-infection was even thought of. A lot of us CF kids would share rooms, we'd play together in the...
  7. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  8. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  9. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  10. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  11. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  12. E

    Culturelle?

    I've had good luck with Jarrows, particularly the ones in a box, keep them in the fridge even if it says it doesn't need to. Unless it's pretty cold where you're at. I take around 10B cells (2 capsules) and I notice a difference with gut pain and hemoptysis. The latter b/c it's supposed to help...
  13. E

    CF Music Project Update Thread

    dude, first of all I mentioned I don't log in to this forum often so email is best. I was working with HAVOC where my drum triggers would correlate with CF sounds. I also offered to HAVOC that I could add the drums after your done with the music, or whenever. If you're still interested. Btw, I...
  14. E

    CF Music Project Update Thread

    dude, first of all I mentioned I don't log in to this forum often so email is best. I was working with HAVOC where my drum triggers would correlate with CF sounds. I also offered to HAVOC that I could add the drums after your done with the music, or whenever. If you're still interested. Btw, I...
  15. E

    CF Music Project Update Thread

    dude, first of all I mentioned I don't log in to this forum often so email is best. I was working with HAVOC where my drum triggers would correlate with CF sounds. I also offered to HAVOC that I could add the drums after your done with the music, or whenever. If you're still interested. <br...
  16. E

    Do you have friends with CF?

    I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference...
  17. E

    Do you have friends with CF?

    I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference...
  18. E

    Do you have friends with CF?

    I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference...
  19. E

    CF Equipment?

    I had similar issues with Pari compressors, I went through two in a few years b/c they just kept getting slower and louder despite changing filters. I recalled having nebs for many years that lasted much longer. I did a lot of research and settled on the Devilbiss Pulmo-Aide as well. I had it...
  20. E

    CF Equipment?

    I had similar issues with Pari compressors, I went through two in a few years b/c they just kept getting slower and louder despite changing filters. I recalled having nebs for many years that lasted much longer. I did a lot of research and settled on the Devilbiss Pulmo-Aide as well. I had it...
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