Survey results Qualitative You Matter...


The survey results are in and have been sent to those who requested but I am still working on the qualitative results of our recent survey in particular Question 4:
We are interested in the top questions YOU want answered regarding cystic fibrosis, patients, and caregivers. Please tell us what you’d most like to learn from the CF community.

478 people took the survey. There were 654 questions posed from the 249 people who answered Question 4.
I will begin with Respondent 299 who asked this question...if you feel so moved please answer.

  • Describe someone who has been most helpful of how you live your life with CF?


I would have to say my CF team at The University of Pittsburgh Adult clinic,The encourage me and help me understand what is going on with my Lungs .Also they always get back to me when I am needing a script or to talk with a doctor ,From the Social worker on to the nurses to the best doctors i ever. had ,I have been to other CF clinics two before this one and My team is the best They help find research opening when i fit the research and to me this makes me secure knowing I have the top notch Cf team!
I would most like the support of question when they come up and for me this Cf Community is the place i look for answers when i am sick or when i am confused I look for the support of kind and thoughtful others and knowlege when i cant get answers there are many here who can explain what I am trying to get answers I found out late in life with Cf I was 50 and so i feel like when I have a question I look to many because I get different pieces of the puzzle.
I have to say having this CF community is a life line and for that i am most grateful !

of Pittsburgh the a


New member
Husband - Living life to the fullest

My husband.
He is my primary motivation. Sometimes it's because I simply want to stay healthy enough to be around so that we can continue to grow old together. The biggest inspiration he offers is that he also has CF and I admire how he doesn't let things get in his way. Some how he is incredible with balancing a healthy life with a quality life.
Despite all of our health challenges, we do our best to live the best life we know how to live.


New member
My mom. She was my first caregiver, and her dedication to my health helped me realize the importance of all my daily treatments. When I was a kid, my mom would do CPT 2-3 times a day. When I moved on to the thera-pep, and later the vest, remembering all those hours my mom spent with me doing my treatments helped me as I transitioned to taking on the responsibility of doing treatments myself. She was my advocate at the doctor, and wasn't afraid to stand up for me when their advice seemed off. Despite all this, she tried to give me a normal childhood and let me do all the crazy stuff kids do. How I view my health and my life today comes largely from the foundation she gave me.


My wife. She seems to know what I need at different times and stages. She knows when I need a gentle nudge or a serious push. Despite challenges we've been able to create a great life together. We've traveled to many parts of the world that I never imagined I would ever see. Our oldest daughter is heading to college in the fall and the youngest isnt far behind. When they were young I use to just worry about raising them. Now I'm actually contemplating an empty nest. Again, things I never imagined would be possible and wouldnt have been without my wife's determination that together we live life to the fullest.


From Respondent 52...we have this question:

  • Medical Record Keeping (How do you store your medical records?)


Super Moderator
I have a file folder for old paper ones but now just rely on the clinic portal that allows access to most of the info (culture results, w/ suscepitility), blood draw and xray results, mediciations, etc. Ditto for pharmacies...can pull up and see scripts etc.


Super Moderator
I have 3 ring binders. My husband is actually the more organized of the two of us when it comes to paperwork so I hand all of that off to him and he files it away.


I'm sorry I did not know abt the survey? I don't get on site often enough. As for question 4 I wld hv to say my CF team as well at my clinic. We work together on keeping me well, and hvg necessary tests done. But also with so many changes in insurance I've hv a number of problems with getting certain medications which I've been using for years. I'm like what the hell is going on? as when the pharmacy calls and says oh you can't get that drug anymore.
I am amazed. So I've had to get help more than once from our social worker, who is new at our clinic, I've never needed help before as our insurance was great, but now we both fall under medicare, and so many changes have come about, ever try to read their booklet and understand it? I really wonder who writes these booklets? I hv to start at the beginning more than once and forget about getting a real person on the phone. It's so frustrating, I just break down and cry most times. sad to admit that as I was always a very strong willed person, now I'm becoming a jelly fish. I know I always go into too much detail. See that's why I can't come on too often my answers turn into short stories. In my 25+ yrs. at the same place I've seen doctors and staff come and go, and it always makes me sad as you build a relationship with these people. As for my family they still look and do not realize my sickness or mental struggles at times that saddens me as well. As for medical records, you hv me worried I don't save anything more than a year. Except for some impotant papers like yearly tests, or hospital stays. What am I supposed to be saving? Please let me know??


New member
Well my parents where and still are helping me with everything from health issues to doctors visits surgeries and emotional problems they are saints im my eyes and when I got married my wife was wonderful at first then after a few years I got worse and needed more help and I guess it wasnt what she wanted for her life now back home to parents and they are just as great as when I was young but I feel sad that at there age they still have to help me I want to b helping them but I keep getting worse as time goes by I do have a friend that helps maybe one day if she truly wants this kind of life with me she will b my wife and help me she does well while we are together I just want it to b for life I dont habe enough time to look for another and I go to upmc and they are good they give me strat answers and always do what they say they will I used to go to wvu but my doctor from childhood just left me to go to peds now I have a doctor that is not a cf specialist and isnt very caring I rarely c him he makes his assistant come in its not good so goin to upmc was a great decision everyone cares nurses to doctors but I think it was in the begining my parents who showed me how to take rof myself and stayed on me went to every appt. Amd made sure I did all my treatments amd always looked for new drugs they my parents are the most amazing wonderful people in the world