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Wife to Man With CF

I don’t have CF but I’m married to a man with it. He was born with it, he has Delta F508. Thankfully, he’s healthier than most but he also doesn’t do what the Drs want. He’s only in the hospital once a year due to 2 lung infections, staph, and pseudomonas.

It’s a struggle finding affordable care

He only goes to the hospital when he really needs to, mainly because where we live the Drs don’t know what they are doing and he doesn’t have disability or Medicaid. According to social security and Medicaid he isn’t “sick” enough for it, all because he has pushed his body to do better.

So we can’t afford to go to Chapel Hill here in NC when he is sick. The last time we went they refused to treat him without constantly saying he was shooting up in the HP room. This was said because a nurse left a flush on the bed and they automatically deemed him unworthy of being treated as a human being. Even had a 24 hr nurse sit in in the room with us. So that’s just been this past year.

Looking for support

Other times he gets sent home because the hospital doesn’t know what they are doing and won’t do anything without insurance. He just turned 26 on the 19th of October. He hates talking about CF, so when I saw this site on Facebook, I decided to sign myself up so I can learn more and also see other peoples stories and see if anyone else may have similar thought processes as my husband and if it’s helped y’all out too?

– Signing off *HisWife*

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Comments

  • Tboos
    2 weeks ago

    I too have been treated that way. Does he see a specialist? I live 2 hours away from mine, but they work with me. When I was younger I wasn’t hospitalized too much, but my life became very stressful and my health took a big hit. I hope your husband continues to do well, but also heed the drs advice.

  • Cheriz K. moderator
    4 days ago

    Hi @tboos, I’m glad your specialist works with you despite the distance. Hope you are doing well currently. Thanks for sharing. Have a great weekend. Cheriz, Cystic-Fibrosis.com Team Member

  • Sarah Coff moderator
    3 weeks ago

    Hi @HisWife13, thank you so much for sharing your story with the community! That’s awful to hear that he’s not always able to get the care he needs due to insurance. Caring for a loved one can be really challenging at times, and I think it’s incredible that you became a member on our site and have decided to learn more about CF. There are so many others like you dealing with similar situations, and I hope knowing that makes you feel less alone. Best wishes to you and your husband! Sarah, Cystic-Fibrosis.com Team Member

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