How has adult diagnosis of CF changed your everyday activities?

@lindam272 @choosejoy @tinaesims @mtyler
@ckscoville, asks a good question. Having been diagnosed with cystic fibrosis as an adult, how has the diagnosis changed the way in which you socialize with others or engage in everyday activities?

I still socialize. I play bridge, golf, work at a soup kitchen, go to Senior Sneakers. I do everything with a mask except golf and bridge. My bridge group is relatively small and if anybody has any ache or pain, we cancel.

I typically stay away from large groups indoors mostly during cold and flu season. I play cards and was playing at the Rec Center in Sun City, AZ where I live, but stopped in the fall as more people came in and more cases of resp disease went up. I will start again in the summer but for now, play with my friends who know my situation and will always let me know if they aren't feeling well. I either do grocery pickup or delivery and stay out of grocery stores unless I need something and can make it quick. I go to chair yoga, movies and lots of other places but always aware. I sit in the last row at the movies. I don't wear a mask until I feel threatened by someone coughing. It's really hard for me to breathe in a mask and my O2 levels drop.

@lindam272 Have you noticed any effects on your CF -- good or bad -- from the climate in Arizona? I've only visited there briefly, but I think it must be quite different from Florida.

I don't have CF diagnosis yet, although my CF doctor believes I have CF related syndrome. I didn't push to get the CF diagnosis yet as I thought it might influence future insurance options.
I have been on trikafta for 4 months , off label drug use, and it is helping me alot. Insurance had denied for 3 years and then overturned their decision when my cf pharmacist went to bat for me and wrote a 3.5 page appeal letter. I am also trying pulmozyme instead of or in addition to sodium chloride nebs. My regular BE pulmonologist is silently going along with this since I am doing so well and much better than on the regimen they had me on, which was just airway clearance.
Before trikafta I was on the brink of giving my notice to my job because I could not control the amount and frequency of green phlegm and airway clearance through nebulizing. Insurance may or may not re-approve trikafta starting in May for the remainder of the year, but I am hopeful it will, since I am doing so much better now. Fatigue is still very much a problem, but my job is terribly demanding on my fragile body, and my goal was always to work til 65. I don't have much energy for other things besides work, but I am ok with that for now, knowing that retirement is coming in Jan 0f 2027. You have to save alot of money to plan for expensive copays and out of pocket maxes when on expensive meds. Reason I qualified, finally for the trikafta is because I have the 508del mutation and borderline sweat chlorides and 90 % of CF symptoms including bronchiectasis and because the clinical trial I went on for trikafta proved to help me.

@mtyler Regarding the cost of copays for drugs like Trikafta (copays that can really shock you when you first hear about them!), I have previously found a number of foundations like Healthwell, The Assistance Fund, and the Patient Advocate Foundation for Copay Assistance, that can -- based on your income and need -- offer grants to offset the medication expenses for cystic fibrosis patients. That's a resource I didn't know about initially; they can really help!

Pug, thank you for these resources. I will write those foundations down that you mention above. I am going to be on Medicare and plan on having to shop for either supplement with drug plan or advantage plan -early next year, so will need as many resources as possible. Currently my health insurance has a low enough out of pocket max and I am eligible for copay assistance through a Foundation affiliated with my Specialty pharmacy insurance. Have a great evening!!