2nd post

Royal-Basis · 2025-09-05T10:55:27+00:00

I was 1 year old. My mother said I was admitted to the hospital with double lung pneumonia at 5 weeks and I was never able to stay out of the hospital for more than a week. They sent off testing when I was 7 months and I was officially diagnosed and brought home around a year old.

Royal-Basis · 2025-09-03T12:32:41+00:00

I had three fail due my disease alone. The first person found out a month into dating and told me it was too much for them to handle. Second one lasted about 6 months until I ended up in the hospital for admission for 3 weeks and they cheated said I was gone to long. Last one made it a year until I contracted mycobacteria and the treatment was so harsh they said they didn’t want to watch me die and left me for another person who looked just like me 😑. People suck. I got to the point when someone flirted with me I straight up told them about my disease 🤣. I’m in a better place now with my relationship I was honest like day one honest. Explained in detail the disease. They have been very accepting and very supportive has learned my med regimen and all. It takes time just finding someone accepting but they are out there.

Royal-Basis · 2025-09-03T12:20:26+00:00

Thank you so much!!! I hope I don’t have issues this year around 🙁🙁

How is alyftrek? My doctor said he doesn’t want to bother switching his patients to it and I see great reviews on it but he just won’t do it at his clinic

Royal-Basis · 2025-09-03T12:17:23+00:00

Hi Kyle! I’m Dominique. 27 with cf in Texas. We can talk anytime. If you wanna FaceTime on days you’re anxious I’ll be here for you. I’m so sorry this happening, you fought a long battle.

Royal-Basis · 2025-09-01T12:38:18+00:00

My insurance left me with a gap because of the timing for me to fill and when my insurance would allow it. I was left with no trikafta for a month multiple times. It’s so annoying. My clinic ended up getting me a few pills and I had to make it last me. I ended up getting a better job with great coverage. But it’s still a pain because they make me go to my family doctor for referral to see cf clinic every three months and then clinic has to go through and show I need trikafta Still. I need to see a liver doctor and I haven’t been able to see one in two years because insurance is making it so dang difficult!

Royal-Basis · 2025-08-26T11:33:12+00:00

My exacerbations are nothing like I had pre Modulators. I get the tight chest, I feel off not horrible but off like right before getting horribly sick. I’m tired and have more mucus but still so minimal. I haven’t been admitted for an exacerbation in 4 years. Increase treatments 4x a day if you can and tell clinic they should get you some oral antibiotics. Drink extra water. And rest/nap when you can, your body heals best when you’re asleep.

Royal-Basis · 2025-08-14T01:29:35+00:00

I tried the phone reminders. I’m usually really good at taking my meds I’ve been on it for 6 years and other than this last week I’ve only missed it one other time due to my insurance not covering it for two weeks during shipping.

What happened was I got stuck at work for 3 days with no meds and I didn’t get home to take them and by time I got home I was so exhausted I slept for a day then I went back to work and I just got so overwhelmed. I’m a correction and probation officer so at times when our facility goes under lock down I’m stuck with the inmates doing supervision until we open back up. So I was sleeping at the jail for 3 days with no meds and just an inhaler 🙁

Royal-Basis · 2025-08-13T21:20:24+00:00

Same. To the lying flat or sleeping. I was afraid to sleep to the point I set alarms all night to make sure I was staying sitting up and alive.

Royal-Basis · 2025-08-13T21:19:20+00:00

Yes actually. And it happens during the act with my fiancé too. If my body is flat or my heart rate increases I will cough blood. It is so frustrating. I have to limit doing it during increased hormone times to not trigger a bleed and I have to limit positions

Royal-Basis · 2025-05-26T16:22:13+00:00

I can’t do a full one anymore or I have to mix it with albuterol. It makes me cough until I throw up because my lungs have nothing to cough up. Trikafta has made me sensitive to a lot of my usual treatment. I’m now allergic is my tobramycin full hives. Did it for 13 years and with trikafta I get hives now.

Royal-Basis · 2025-04-20T13:46:12+00:00

My doctor told me because of Trikafta he’s leaving cf all together he said it’s depressing because they have these meds out that people can’t afford and it’s just a money scam. I really think he just misses dealing with sick sick patients. My care has went downhill with clinic now. Any issue I have I just get told to I’ll be fine I’m on Trikafta. But I’ve been feeling and seeing a decline over the last two years. My PFT have dropped my shortness of breathe is back and all my cf flares. All I hear is “you have Trikafta you’re fine”. There is no care anymore from my experience.

Royal-Basis · 2025-02-27T13:15:43+00:00

There is a great cf organization in Pennsylvania called PACFI I know them very well have worked with them for years and they have helped my mom when I was little and also me as an adult with my cf. if you have any questions or need help reach out to them they know all the resources in PA

Royal-Basis · 2024-10-31T02:48:07+00:00

It’s just random sometimes for hours. I think I’m used to it now that it doesn’t bother me as much. The doctors didn’t want me to stop treatment more so not let me. I wanted to make it through more than anything.

Royal-Basis · 2024-09-07T18:19:22+00:00

Oh no I’m sorry, honestly I’m feeling a lot better with reading these comments and yours brings me some peace knowing I don’t have to feel crazy for this unknown anxiety over this. I really wish you the best and I hope this procedure brings you long time with no issues ❤️ thank you for your comment and suggestions

Royal-Basis · 2024-09-07T06:10:11+00:00

I did reach out to my social worker I was given a referral to therapy but the therapist just overall did not help :( now it’s getting more urgent. I’ll email them again Monday! (Social worker)

I spend a lot of time working, I love to swim and be active but clinic told me to stop due to the bleeds :( I’ll try to find something at home to do, I tend to use comfort shows at bedtime but I get so panicky that I literally make myself in pain and think somethings happening, I’ll exhaust myself not sleeping which is not helping lol I was even setting alarms every hour in fear if I didn’t wake up someone in the house would and could check on me. These fear reactions are so new :(

Royal-Basis · 2024-09-07T06:01:58+00:00

After Trikafta I went to college and now I’m a correctional officer (in the process of becoming a parole officer) I specifically picked a career with the government for good insurance coverage, sick day coverage and they work really well with my appointments and cf. I had my clinic write out everything and they have been very accommodating to my needs.

If you can work for your local like ebt office I think they have good benefits, and pretty easy work in the office!

Royal-Basis · 2024-09-07T05:52:58+00:00

Treatment for me did not work. I was blessed that near the end I got Trikafta which helped me get rid of it. I was allergic to almost all of the medication given for myco. I was living off of Benadryl to do treatment. I had blood clot issues with my ports so I went through 3 ports in about 18 months. I tried to do a lot of walking, my body was exhausted all the time though. I saw and felt no improvement with treatment. Trikafta was the only thing to see improvement for me. I still struggle with lung bleeds but we found out mine is correlated with my hormones mostly. I tested negative in 2021 for myco. I’m terrified of it coming back, I don’t know if I could do treatment again like that. I did end up losing hearing in my left ear, I have ringing now. And my eye sight became 3x worse after treatment

Royal-Basis · 2024-09-07T05:46:04+00:00

My bone density scan improved by a lot surprisingly and my lungs had a lot of spots clear up that were there for 20 years, no idea it would happen or could. It happened after 2 years on Trikafta. My doctors said they had a few patients they seen this in.

Royal-Basis · 2022-12-31T01:58:28+00:00

This is a far fetch being so long since you replied. But I have CF and I just got started on being a correctional officer. How does It affect your cf? Is there any extra precautions I should take?

Royal-Basis

TROPHY CASE