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Type: Posts; User: atrippet

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  1. Replies
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    I typed this long reply but I don't think it went...

    I typed this long reply but I don't think it went through. I still have elevated enzyme levels and unfortunately liver damage. May be from cf in general. I take ursodial (actigal) 3x daily for...
  2. Thread: Drop in Fev1

    by atrippet
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    7,327

    Before I saw your post I was going to mention...

    Before I saw your post I was going to mention mycobacterium. It's a silent dropper. I was lucky to have it treated last year at National Jewish in Denver. Dr. Nick is the leading expert in...
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    I moved to Colorado with a higher altitude than I...

    I moved to Colorado with a higher altitude than I am used to. My o2 has definitely gone down. I've acclimated but I would think this would be dangerous. The air here is cleaner and I have almost...
  4. Thread: ENT in Denver

    by atrippet
    Replies
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    4,120

    Dr. Ghogomu in Denver is wonderful. He comes...

    Dr. Ghogomu in Denver is wonderful. He comes recommended for people with cystic fibrosis. My husband had a huge bleed after sinus surgery and this Dr. saved his life.
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    I do something called an IPV. Or intrapulmonary...

    I do something called an IPV. Or intrapulmonary percussive ventilation. It is an old school treatment. I had 3 different vests, they never made me cough anything up. I cough up so much now. I...
  6. Child needs transplant but has mycobacterium absessus. MAC OR MAB transplants reply

    Need help. A dear friend of mine has a 9 year old son who needs a liver transplant. He unfortunately has a very active mycobacterium absessus infection that they have been trying to eradicate for...
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    My cf clinic does them. Go onto cff.org and look...

    My cf clinic does them. Go onto cff.org and look up cf care teams. Hopefully there is one nearby to call. They will either do them or no where to get one.
  8. Thank you everyone! Just saw these posts. I've...

    Thank you everyone! Just saw these posts. I've had a sick fall with back to back hospital stays. Home ivs ended up costing me $200 for one week. I could not opt out of supplies even though I...
  9. Jaimers...oh yeah the shortness of breath has...

    Jaimers...oh yeah the shortness of breath has kicked into high gear!
  10. LL, Thank you so much for all of your info! I...

    LL,
    Thank you so much for all of your info! I read it a while back and then I tried to reply but I was in the hospital back to back..Sept and Oct..it's been a rough fall. The hospital I go to in...
  11. I called Compass (cf legal hotline) in June and...

    I called Compass (cf legal hotline) in June and they have not been able to help me prior to today. I finally got someone...named Aaron who is helping me nail down a Medi care Advantage plan that...
  12. I'm not eligible for many supplemental plans bc I...

    I'm not eligible for many supplemental plans bc I am under 65. The only one I'm eligible for is $360 a month...add in straight medicare and PPD plan. Nit affordable.
  13. Yikes! $35 for a pump is still pretty expensive. ...

    Yikes! $35 for a pump is still pretty expensive. I appreciate the response though.
  14. Thanks!! Ughh that is so sad.😢 I saw her post...

    Thanks!! Ughh that is so sad.😢 I saw her post and while it sounded like a good deal, I know my Dr would never go with it.
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    You have come a long way. Congrats for all the...

    You have come a long way. Congrats for all the leaps and bounds you have made. I understand the baby fever. I have a 2 year old and I'm 34. I cannot physically take care of another child. It's...
  16. Hi there! Did you ever move to CO? Or find out...

    Hi there! Did you ever move to CO? Or find out any of these answers? My husband and I are thinking of moving to the Denver or Springs area for my health. I also have similar questions about...
  17. Moving to Colorado- Between Denver and the Springs possibly-Short term rentals?

    Hello! My husband and I are looking to make a move from Central Texas to Colorado. We want to be close enough to National Jewish in Denver for CF care. However, we are mainly moving because my...
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    That is pretty amazing! i was no where near that...

    That is pretty amazing! i was no where near that compliant until my mid twenties!!!
  19. Medicare- Is there ANY way to get HOME IVs covered?

    Hello! I had an account here years ago but could not remember my user name so I re-signed up. I'm 34 with cf and have been on SSDI for 2 years now. I'm eligible for Medicare Sept 1st. ...
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