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*
Have you (or a loved one) been experiencing any negative side effects from Trikafta?