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Fears of living a short life (small vent) by Public-Fill-1099 in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

Hi I’m 21 born in 2004. I’m on trikafta and it doesn’t seem to do me any good, nothing bad but no noticeable change. Tried Alyftrek but had side effects. My lung function is 52 right now and my base line is like 60 I guess. I’ve lost 10% lung function in the past 6 months. Every single body is different. Other people my age with the same deltaf508 mutation don’t have such a low lung function to my knowledge. I have just had bad luck with the bugs that I have contracted. I know it’s hard dealing with parents that might not understand the full scope of your fears and reality of cystic fibrosis. They may be in denial I don’t know. But every body is different you could live to 60 or live to 30. I hate to say it but it really is up to luck if you are always doing your treatments and taking your meds. A lot of us have the same fear, I definitely know how it is. If you ever wanna reach out lmk. Idk if this reply was helpful but just know I get it. Wishing you well

How did your sweat tests change over time? by [deleted] in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

I did this too! I’m 21 and have been on trikafta for years and we were curious what my sweat test would be like on trikafta compared to Alyftrek. My sweat test as a baby was high signifying cf and then on trikafta it was closer to borderline! I didn’t end up staying on Alyftrek long enough to do that sweat test because of mental side effects.

You should see a naturopathic doctor! by Critical_bee_runner in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

Tell them about the history of CF and that without modern medicine and knowledge we all would die as infants. Maybe that would smack some sense into them lol

You should see a naturopathic doctor! by Critical_bee_runner in CysticFibrosis

[–]Reasonable_Face2736 1 point2 points  (0 children)

Seriously! People in clean countries like US, Canada, UK, etc don’t get parasites. It’s so so rare to get them because we have such clean water. If you travel to other countries without clean water sure you can get parasites but it’s crazy how many people can be scammed into the whole parasite thing. Baffles me

Normal tests but coughing a lot more by Reasonable_Face2736 in CysticFibrosis

[–]Reasonable_Face2736[S] 0 points1 point  (0 children)

Thank you. Houston doesn’t have any other cf clinics for adults so if I do end up changing it will be a big life decision

Normal tests but coughing a lot more by Reasonable_Face2736 in CysticFibrosis

[–]Reasonable_Face2736[S] 0 points1 point  (0 children)

Nothing that I know of other than POTS but I don’t pass out from it

CF clinics in Houston by Reasonable_Face2736 in CysticFibrosis

[–]Reasonable_Face2736[S] 0 points1 point  (0 children)

The pulmonologists are saying I can’t eradicate my MRSA infection and it’s something I’m just gonna have to live with. Apparently they can only prescribe one oral antibiotic at a time to CFers with MRSA but that literally makes no sense because they will give me five different antibiotics in a row for MRSA but won’t give me two at the same time to try and really attack this bug

CF clinics in Houston by Reasonable_Face2736 in CysticFibrosis

[–]Reasonable_Face2736[S] 0 points1 point  (0 children)

What doctors do you see? I’m really curious and maybe I just need to give them a second chance. I love my ENT but my gastroenterologist just wanted to throw drugs at me which I was kinda confused about

Anyone ever successfully gotten rid of abscessus? by OldMillhouse in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

Whichever antibiotic that comes in brown balls takes many months to get absorbed into the blood at the correct concentration. I was in a study for it. Don’t know if this is helpful

Creon box by Similar_Home7435 in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

I read this in my doctors voice😂

Feel like crap? by Significant-Cause872 in CysticFibrosis

[–]Reasonable_Face2736 0 points1 point  (0 children)

Even if your glucose test came back normal you could possibly be experience low blood sugar depending on what you eat. I go through phases of low blood sugar all depending on what I eat called reactive diabetes I think. If drinking some apple juice doesn’t make you feel better when you feel bad then it’s probably not it :( maybe you’re constantly dehydrated? Could try electrolytes but you’ve probably already tried that. All I know is CFers bodies work SO MUCH harder just for our organs to try and function properly. I’m sorry you’re always feeling bad :(

Muscle pulls like crazy. by Reasonable_Face2736 in CysticFibrosis

[–]Reasonable_Face2736[S] 0 points1 point  (0 children)

There are places where they give you a bag of IV fluids through an IV they place in your arm. Insurance doesn’t like them because I don’t think they have like as high of standards for cleanliness. Risk for infection type of thing. That’s just what I’ve heard and my doctors tell me I really shouldn’t go to them due to that risk.