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How are you doing on Trikafta? Benefits? Side-Effects?
Cystic Fibrosis | Last Active: Apr 11 2:43pm | Replies (12)Comment receiving replies
I’m Stevo 73 years old living in Monticello, MN and was diagnosed when I was 45. I was tested because of chronic pneumonia and infertility. I am on a Medicare Advantage plan and they have paid for Trikafta and Pulmozyme without any problems.
I injured my shoulder and can no longer use my vest treatment. My doctor and respiratory therapist have recommended I get a Valero system but my Medicaid Advantage program twice has refused to pay despite the fact that it’s use in the hospital improved lungs.
Has anyone else had a similar experience?
Replies to "I’m Stevo 73 years old living in Monticello, MN and was diagnosed when I was 45...."
@sdlarson91951, I add my welcome. I hope you saw the helpful post from @ckscoville here: https://connect.mayoclinic.org/comment/1538055/
You might consider enlisting the help of your pulomonary social work to dispute the denial. They may be able to help.
Is your shoulder injury temporary and you will be able to return to your vest treatment? How are you doing?
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@sdlarson91951 Stevo, first of all, welcome to the group! The fact that Medicare Advantage has paid for your Trikafta is a true blessing to be appreciated. I cannot use Medicare Advantage with losing access to some doctors that I depend on, but I really am glad it's worked for you.
I had a different problem using the vest; it interfered horribly with my pacemaker, causing my chest pain every time I used the vest, so I had to give up the vest or give in to the pain... I gave up the vest. Doing so, I looked for alternatives and -- on Mayo Clinic Connect -- found others who had used a Theragun successfully to break up junk in their lungs. I got one and my wife used it on my back regularly to break stuff up. It worked very well!