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Jun 11, 2024
12:18:11am
Coug123 3rd String
My journey with Cystic Fibrosis
Hey fellow cougarboard members! I wanted to see if there are other people here that have experienced the life of Cystic Fibrosis. Whether that is you or a family member. I wanted to find other people to relate to and hear their story.

My story goes like this. I was just diagnosed with Cystic Fibrosis this February at a later age. It all started when I noticed aquagenic wrinkling of the palms and having overly sweaty hands. I went to my Doctor who referred me to a Dermatologist. The Dermatologist took one look and said, “yup. That’s Cystic Fibrosis.” WHAT?

After that I was referred to get a sweat test done. The sweat test measured the amount of chloride in my sweat. Long story short my sweat test came back 61 and 63. (Anything over 60 is positive for CF). Then I had a fecal elastase test of the pancreas enzymes (anything over 200 is normal). My test came back 160.

Both of these scores indicated a problem, but it wasn’t super alarming. They were all pretty bare minimum indications for CF. After all this I got a DNA test that confirmed I had CF (one of my genes is the common Delta 508).

So from then on my CF journey begun. I was prescribed for the miracle drug known as Trikafta. Trikafta comes at a very cheap price of around $300,000 a year. I was also prescribed a digestive enzyme called Creon. I now have appointments every 3 months where the CF crew does every test known to man.

Since starting on Trikafta, my Pancreas enzymes are back to normal. My sweating and wrinkling has stopped. And I bet my sweat chloride is back to normal as well.

I am now starting my journey with the CF vest and inhaler program. (If you know you know). Anyways, that’s my story! I have never had anyone in my family with CF. And I didn’t find out about it until this year. My case seems to be very rare because I have zero lung issues. My Doctor’s told me that I can still serve a mission but only Stateside. I was on board on the mission train until I found out about this daily vest and inhaler. All of this is making sense now as I have had trouble growing my whole life. I suspect that CF knocked around 4 inches off my growth. Every year my doctor would tell me to gain weight. But no matter how much I did I could never gain weight.

I am looking and wanting to hear other’s journeys with this disease and how you handle it.

Anyways, that’s a short (and very long) summary of my experience with CF. The treatments are beginning! Let me know your story. I am very interested.
Coug123
Previous username
Duke Jones
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Coug123
Joined
Nov 1, 2021
Last login
Jun 16, 2024
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