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CF Care is Awful while struggling with Lungs

I am close to a CFF-approved care center but the care is awful... I was a case number and not much more to them. I tried Trikafta but my liver suffered greatly. They were upset that I stopped the med. Last year I got covid and my lungs suffered greatly. I struggled to find a physician to help me (my lungs were bleeding and my energy was struggling.

I finally find a pulmonologist, who is very nice, knowledgable but is overwhelmed with my care. My lungs are still bleeding since covid and some days the bleeding is terrible. He did a brochoscopy but he says there is nothing to cauterize....everything is bleeding in my left lung. He has me on an antibiotic right now to try to aid in healing and reduce inflammation. My lung function is fairly stable at 59% and 95% oxygen.

I am afraid of having a major bleed. Most days it is streaks, and dots of blood. I have good days of no bleeding. Once in a while I have a significant bleed (more than Tablespoons but less than 1/2 cup). Everything set the bleeding off... coughing, laying flat, laughing, stress, exercising, getting overheated or short of breath.

I pretty much stay at home for fear bleeding in public, fear of getting covid again or another infection.

I have contacted Mayo Clinic but they have to agree to a contract with my insurance company before I can be seen. I have a similar option in another near by state, but it is all dependent on my insurance. In the meantime, I am hanging on for dear life. There is only one clinic in my state and insurance network so my options are extremely limited

I have contacted the CFF for assistance several times over the past couple of years and they are not helpful.

If anyone has any suggestions I would love to hear them. I am at my wits end. Thank you in advance. (I was a member here a long time ago...)

  1. Hi there! I had problems with that before to, hemoptysis is severely scarey. I had a bad episode earlier this year and had to have a pulmonary embolism surgery. Did you notice if maybe your coughing up happens after you eat certain foods or lay down a certain way? If you have any questions please feel free to talk with me about it I had experiences in this. Thank you. Ps. I hope you feel better soon.

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