Q+A Adult with CF

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CFwyfe

New member
Hello everyone,

First off, I do not have CF. BUT my husband, Dave, does. He and I put together a video sort of telling Dave's CF story in order to raise awareness for the CF Great Strides walk and for the disease. (the original video: https://youtu.be/iri9hHC4yYI ) We got a lot of questions after posting the video about growing up and just more specifics. So, we are in the process of putting together an update video this year. I know you all here wouldn't have questions, per say, but is there anything that you would want us to touch on? Any topics that you would have wished you had known growing up? We hope to help give kids hope in knowledge, you know? Any suggestions would be greatly appreciated. Thank you in advance and take care <3
 
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jesspled

New member
Hello, my name is Jess and I was diagnosed at 4 months old. The biggest struggle for me was and still is getting my treatments. Big peice of advice: listen to every word your doctors say. Growing up I accepted my illness but not how to take care of it. I wanted to prove my doctors wrong, that I was stronger than this illness I was born with. But obviously they were right, I started getting this cough that wouldn’t go away and I was hospitalized for the first time last summer (I am 20 years old currently). They may be sending me back to the hospital next week even. So I would tell people that you are stronger than CF but why you’re so strong is because of all the treatments and hard work you put in to take care of yourself. Also to keep up with the treatments even though they totally suck. I would also recommend finding something you really enjoy to do when getting your treatments, it makes a world of difference. Also joining community websites like these are helpful. This is the first time I’ve ever Communicated with other CF patients and I wish I had done this when I was much younger. For the first time in my life I can talk to people who truly understand what it’s like to live with CF and also for the first time I don’t feel as alone in my fight. Hope this helps!
 
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kenna2

Member
I would highly suggest talking about our mental health and suggest that they find a therapist or someone that's a 3rd party that they can talk to. CF is isolating, depressing, and causes a lot of anxiety. It's a huge battle, but one that you don't have to fight alone. Having someone who can help you finally accept your disease and learn how to cope when things go south is really important. Having those tools really help and finding those ways that you do have control over CF is important for us to know. Really stress that you might have to go through some therapists to find the right one that you click with. When I asked for mine I wanted someone who has had experience working with Chronically Ill patients, so that's what I asked for at each place I called.
 
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CFwyfe

New member
hey everyone! i made the video : ) thank you all for your help. i hope, in turn, that this can help you guys a little bit. i know that the CF world can feel lonely sometimes. take care everyone! youtu.be/0d5UjBgOXCA
 
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