Thursday, May 15, 2014

CF Community Interview - Rebecca Runyon Bryan (Cyster)

In this interview you will read what it was like for Rebecca to go through decades of her life without a diagnosis.  Yes, you read that correctly decades! It's crazy to think that there are still many people like Rebecca who are walking around not even knowing they have cystic fibrosis.  It took doctor's 12 years to figure out that I have CF.  I just cannot believe it took doctors this long to figure out that Rebecca has CF!

All I know is that this story of determination is inspiring and speaks for itself.  I can tell you that Rebecca is one of the eldest CFers that I know.  She has also lived to see a true miracle in Kalydeco. Just recently, Rebecca's one mutation was added to the Kalydeco label.  WOW! What a feeling that must be for you Rebecca.  This is why we research, raise awareness, and ask for donations for miracle pills.

What a story you have Rebecca! I am glad you are defying the odds every day kicking this disease's butt! Keep it up.  Enjoy Rebecca's story.

NAME: Rebecca Runyon Bryan (Cyster)

AGE: 62 


Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

 Play video of me at 49. It really says it all.  Problems started at birth. Lungs started bleeding which led me to NJH(National Jewish Health in Denver).
 After years of misdiagnoses, hospital stays, IV’s and surgeries all over the USA, I was diagnosed by National Jewish Health in one afternoon at the age of 49 in 2001.  I was so excited to hear someone knew what was wrong with me and it had a name, that I overlooked the word terminal. I am 62 now.

Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)? Maintenance of CF took hold and when I pushed myself too far, I would pay for it.  I started to self isolate when not working for fear of getting even sicker.

What has been the biggest challenge for you dealing with cystic fibrosis?
Self induced isolation from anything but work.
Diet restrictions due to pancreatitis

Please share with us any triumphs you have accomplished because of cystic fibrosis?
Connections and friendships with other people with CF and fantastic relationships with Doctors, Nurses, Volunteers, and people devoting their life for a cure.

What have you noticed from being on the miracle pill, Kalydeco? (Feel free to share any health changes)? Energy!!!!! Appetite!!!

This question floats around a lot.  If you could be born without cystic fibrosis would you?
What have you learned from CF?
“A man has to know his own limitations”

I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  I want to know what you would tell a newly diagnosed parent to a CFer.

Be ready for the LONG haul.  I was given a year to live at 47/48… Keep on trucking and don’t look at statistics or everything you read on the internet.

I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis.  As a CFer who is married what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship? You need to tell them ASAP.  I gave my loved one a chance to stay or go.  I knew it wasn’t going to be a cake walk.  Thank God he said he wanted to stay and be with me through it. He has saved my life so many times, I have lost count.  . 

What advice would you give anyone who is battling cystic fibrosis today? Be Optimistic. Call, text or email another person with CF when battling the blues.  Stay on top of daily maintenance. If you can’t communicate well with your Doctor, find one that works for and with you on your illness. Love and respect your nurses!!!

Is there anything else you would like to share with us when it comes to your battles with CF?
Keep current on clinical trials and information that affects your mutations.
Eat well balanced meals.
Take your medicine correctly
Exercise your mind, spirit and body.
Love the life you’re given.

John's Notes:

I wasn't diagnosed until 12 years old so I couldn't imagine how it felt going through life not knowing for so long what was wrong.  I can tell that Rebecca is truly a compassionate person when it comes to her health.  She is an inspiration to many of us who are not just battling CF but other health issues.  

Great video as well Rebecca! It's nice to actually hear CFers :) 

I hope that Kalydeco is doing it's job for you and you are feeling like a million bucks! 

Keep fighting!! 

For more interviews here is the link.

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