CF Community Interview - Andy Lipman (Fibro)

In this interview you will read from Andy on what it was like growing up with this disease 40 years ago. Yes, a lot has changed since the time Andy was diagnosed with CF.  Andy details what life is like now having a wonderful wife and now two amazing children.  

You will notice that Andy lives by a very positive attitude in his life especially after realizing his sister only lived about 2 week with CF.  I believe that half the battle is your attitude toward anything in life and Andy exemplifies a wonderful attitude.  

Andy has written 3 books now, has a big charity softball event in memory of his sister, and has carried the Olympic torch en route to the Atlanta games.  Through Andy's dedication,commitment, and hard work he has raised over $2,000,000 in support of making cystic fibrosis stand for CURE FOUND.  That is truly remarkable.  Read below to find out more about this amazing fibro. 

Andy with his son Ethan!

 NAME:  Andy Lipman

AGE: 40

SOCIAL MEDIA SITES:

Http://thedriveat35.blogspot.com

Www.andylipman.com

Www.wishforwendy.org

Andy@andylipman.com



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

I was diagnosed at birth because my sister Wendy died from the disease. When I was around 8, I learned what CF really was and blamed everyone around me for all of my problems.


Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)?

I was very bitter and felt like everyone had it better than me. I thought all of my dreams were unreachable.

I know from reading your blog that your sister passed away because of cystic fibrosis. What did you learn from this?

My sister only lived 16 days and died 3 years before I was born. I didn't know the cause of her death until I asked my mom when I was 25. I learned that every day is a blessing and I should never say life isn't fair because people like Wendy had a much greater beef than me.

What has been the biggest challenge for you dealing with cystic fibrosis?

Having a positive attitude especially when my numbers frustrate me.


Please share with us any triumphs you have accomplished because of cystic fibrosis?

I have written 3 books, run with the Olympic Torch and started a charity tournament in memory of my sister that has raised nearly $2 million.

Andy's championship softball team. Andy is in the maroon sweatshirt. 

Since you have shared with me that you were able to have children what struggles did you face on this path?

IVF was expensive, physically painful and emotionally scarring. I was fortunate to have a wife who was able to deal with our struggles and help them to become successes. My children are my 2 greatest accomplishments and miracles.


Andy's wife and daughter.



How has becoming a father shaped your life? I think many people do not understand that being a father and having CF is very tough. Please share any thoughts you have on this topic. (How is treatment time before and after becoming a father? How did you let your children know about CF? If you had to give advice to any CFer on becoming a parent what would that be?)

Being a father has made me more proactive with regards to my CF. I'm not just staying healthy for me but for them too. Granted it's a challenge and time management is critical. You also have to be careful with germs when they come home from school. I explain to my kids that CF is something daddy has and he has to be proactive about. My daughter has a peanut allergy so I used that analogy. I also tell them to never be afraid to ask me anything.


Were there things you wished your parents did differently as you grew up with cystic fibrosis (Example: more freedom to be in charge of your treatment, speaking at doctor visits, life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)? 

My parents were very proactive. They also did anything they could for me. Yes, they were very overprotective and secretive but being a parent myself now, I totally understand.


You have seen a lot of things as I call you a CF veteran. I assume you have seen a lot of changes in the early days of CF and where we are at now. Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

When I was young, there was no hope. There was no kalydeco. The cf gene had not been discovered. There was no hypertonic saline. There was no vest. And worse, people with cf were not living into adulthood. As I tell people, if you're going to have CF, this is the time to have it. Hope is plentiful.


This question floats around a lot. If you could be born without cystic fibrosis would you? What has CF taught you?

Yes and no. Sure I wish I didn't have to deal with my health issues and concerns but cf has made me the man I am today and has helped me to form a legacy. I guess I'd choose being born with CF.



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.

Don't put your kids in a bubble. Watch out for them but also have faith in them. A cure is near.


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?

Someone once told me that when you have something like CF that you will find someone very special who can handle it. I definitely did in my Andrea. I love her so much. Be open about it but wait till the time is right and be positive and confident. Just like anything with dating, you're selling yourself.

Is there anything else you would like to share with us when it comes to your battles with CF?

I've found that the mental struggles are just as difficult as the physical ones. A positive attitude, being proactive and being diligent with your treatments and workouts are key.

Be positive. Show the world that cf isn't a death sentence. Raise awareness until we can find a cure. Exercise harder than anyone you know. Be diligent when it comes to your treatments. Do your own research. Don't depend on your doctors alone. Build your own legacy.

Andy with his personal trainer!! 

John's Notes:

Andy is full of life and wonderful advice to all of us.   As I said above half the battle when it comes to this disease is our attitude.  You can actually control your attitude unlike most things in our health.  Andy is in charge of his winning attitude and it's also contagious.  I remember finding Andy in the blogger community and I was hooked on his blog site because I could tell that he wrote from his heart.  What really got me hooked was he was living and defying the odds against CF everyday.  I wanted to be like Andy.  Yes, I wanted to be married, have children, and even a career.  I guess it looks like I am following in that path Andy!  Thanks for helping pave the wave for many of us in the CF community. 

I really like how Andy said this quote about finding someone right for you to marry.  "Someone once told me that when you have something like CF that you will find someone very special who can handle it. I definitely did in my Andrea. I love her so much. Be open about it but wait till the time is right and be positive and confident. Just like anything with dating, you're selling yourself."  I think many of us who have this disease and are in a committed relationship would agree with this quote.  I have found my love in Maria and I know many of my fellow CFers have been blessed with someone amazing in their life.  For those of you who are still awaiting that Mr./Miss. Right they are out there and you will find that person one day.  

I think this also sums up how I feel and how I hope many of you feel about your CF. "I've found that the mental struggles are just as difficult as the physical ones. A positive attitude, being proactive and being diligent with your treatments and workouts are key. Be positive. Show the world that cf isn't a death sentence. Raise awareness until we can find a cure. Exercise harder than anyone you know. Be diligent when it comes to your treatments. Do your own research. Don't depend on your doctors alone. Build your own legacy."  

I hope we are all building our legacy every day we get out of bed.  We cannot go backwards in life only forwards.  Enjoy every day you get out of bed.  Take care of yourself not only for you but for those who love you and want to see you healthy.  Defy the odds and statistics of CF as you are the author of your own story!!! 

Thanks for sharing your story with us Andy.  You truly are an inspiration person and influence on many of us in the CF community.  Keep up the great work on raising awareness and funding CF until one day CF stands for CURE FOUND!!!

For more inspirational interviews click here.  

CF Community Interview - Julia Rae (Cyster)

In this interview you will read what it's like for Julia to keep pushing through CF to reach her goals.  I like to say in my life that CF is a long for the ride.  I think that Julia is taking CF for quit a ride.  Once you read her interview you will see the true determination she has for reaching her dreams and goals.

This interview should give a lot of HOPE for the younger CFers out there as well as parents to CFers.  Julia is defying the odds every day chasing her dreams and passions.  If you are a parent to a CFer or a younger CFer yourself, always shoot for the stars because honestly the sky is the limit.  No one can ever tell you that you cannot accomplish your dreams.  If you dream of singing, acting, modeling, and even competing for Miss America go for it.  Julia is on a mission and she is not letting CF stand her in her way.

GOOD LUCK Julia as you compete May 24, 2014 to be crowned Miss New York and move on to Miss. America!! You have already made all of us proud!!

Name: Julia Rae

Age: 21

Social Media Sites:

http://juliaraeblog.wordpress.com

www.facebook.com/juliaraemusic

www.facebook.com/singingatthetopofmylungs

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

I was diagnosed with cystic fibrosis before I was born. I have never known a life without this chronic lung disease which has its advantages — doing nebulizers and pulmonary treatments are as second nature to me as brushing my teeth! 

As you mentioned your brother also battles cystic fibrosis. What have you learned from having a sibling battle the same disease?

Sharing the battle with my sibling makes CF feel less daunting.  My older brother, Will, was diagnosed before me, so growing up with cystic fibrosis felt normal because I had an awesome built-in breathing treatment buddy!

We all know that cross contamination is a big deal when it comes to CF, well at least according to the cystic fibrosis foundation.  What are your thoughts on the new CFF policy?   Is there anything you do to help avoid passing bacteria back and forth with your brother?

As heartbreaking as the new CFF policy is to abide by, I think it is so important in the interest of the entire CF community to follow these guidelines.  We have to protect each other.  My brother and I take precautions when necessary which is difficult because we are incredibly close.

What has been the biggest challenge for you dealing with cystic fibrosis?

I think the biggest challenge has been experiencing setbacks in the midst of chasing my dreams.  I was hospitalized twice in 2010, at the same time I had a unique opportunity to record music – it was a dream come true for me and the timing couldn’t have been worse.  I remember feeling crushed and so disappointed and I had to find a way to accept that this is a part of my life and that there would be better days ahead.

Please share with us any triumphs you have accomplished in the face of cystic fibrosis?

Though CF does interrupt my life, and though it may require a detour now and then, I have made a conscious decision to not let it change my dreams.  Performing, whether singing, acting or modeling, has been my passion for as long as I can remember.  Though I have had to make accommodations for living with a chronic illness, I have performed in front of thousands of people in baseball stadiums and Las Vegas arenas.  I became Miss Pennsylvania’s Outstanding Teen 2008 and was 1st Runner-Up to Miss America’s Outstanding 2009. I was crowned Miss Metropolitan in February and I will compete for Miss New York on May 24th in hopes of walking across the Miss America stage.

Please share with us your non profit you created.  What is the mission & vision and why did you decide to create it?

I struggled with speaking publicly about cystic fibrosis until I was 16 years old.  At that age, I wanted to find a way to combine my love of performing and my desire to help others fighting CF so I decided to start singing at the top of my lungs for a cure.  My mission with Singing at the Top of My Lungs is to raise awareness and funds for research as well as funds to support important, underfunded hospital programs like Child Life and Music Therapy.

Since we know you are a singer, model, and actress how difficult has it been to keep up with all your passions while battling CF?

CF has reared its ugly little head several times that directly conflicted with performance opportunities.  The emotional burden of those instances has been far heavier than the physical.  This past November would have been my 6th consecutive year performing in the ABC Thanksgiving Day Parade in Philadelphia but my lungs had other plans for me on that holiday. You learn to pick yourself up and dust yourself off at an early age when you face a chronic illness.  Of course my ability to do so is thanks to the support and love from my family and my Child Life specialists.

Were there things you wished your parents did differently as you grew up with cystic fibrosis  (Example: more freedom to be in charge of your treatment, speaking at doctor visits,  life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)?

My parents could and probably should write a handbook on parenting children with chronic illness. They are my heroes.  By far my favorite thing that my parents did was enforce the “no TV or video game unless someone is doing therapy rule.”  :)  This rule applied even to James, my oldest brother who does not have CF.  He was always begging Will and me to get our treatments done so we could play Mario Kart together. It was an awesome incentive all around and limited our tube time! My parents also made sure Will and I both always felt in control of our cystic fibrosis and our care. My mother is a rockstar in her own right in the healthcare world - since our diagnoses she has devoted her life’s work to teaching the value of patient and family centered care.

Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

I remember the days before the Vest machine.  My Mom used to do manual chest PT to cassette tapes of our favorite childhood songs!! I have a portable nebulizer that is quite literally my lifesaver! I am able to keep up with my busy schedule thanks to advancements like this.  With the success of Kalydeco, it always excites me to think that the end is fast approaching for the CF regime that these generations have known!

This question floats around a lot.  If you could be born without cystic fibrosis would you? What has CF taught you?

It’s a tough question, too. Of course, given the chance I would remove the heartbreak and the pain that CF has caused me and my family.  But, living with CF has given me a perspective on life that I would never want to give up.  CF has taught me how to be resilient and to appreciate that everyone is facing their own battle.

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 what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis?

I am still figuring this one out for myself so I feel like I am not the best equipped to dole out advice :)  - but I am a big believer that honesty is the best – the challenge is the timing of when and how to share this personal information.  My only advice would be to be true to your own instincts – that I have found has been my best guide.

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.

Though the path seems overwhelming right now, there is so much hope for cystic fibrosis patients today. Not only is the CF Foundation adding tomorrows for all of us, they are adding quality to our todays. And thanks to the world of social media you now have access to a strong cystic fibrosis community…you and your child are not alone in this fight.

What advice would you give anyone who is battling cystic fibrosis today?

Adhering to the daily treatments of cystic fibrosis truly pays off in the short and long term! Go after you dreams full force and don’t let the definition of cystic fibrosis define your life.

Is there anything else you would like to share with us (hobbies, other CF topics I did not cover)?

Would love to hear from you…reach out to me on my social media:

http://juliaraeblog.wordpress.com

www.facebook.com/juliaraemusic

www.facebook.com/singingatthetopofmylungs

John's Notes:

Julia just has one wonderful perspective on LIFE!! The hardest setback of not having the opportunity to record your music in 2010 because of CF has taught you about life.  Sometimes it's choices like going into the hospital and putting your life on hold that are the best decisions.  Who knows where you might be Julia if you didn't make the hard decisions of putting your health before your dreams.  I know you are thankful you put your health first so you could follow your dreams today competing for Miss. New York! 

There needs to be more people like you Julia who are willing to speak out about cystic fibrosis whether that is through their own talents such as singing or even just talking with your neighbors. I have said many a times, the more people who know about CF the more likely one day we will see a cure for this disease.   If we all could find a way to help others who are going through the same struggles the CF community would be just that much stronger.  

As Julia mentioned, when a parent empowers their child to be compliant with their CF care it pays dividends for the child.  It gives you a sense of fulfillment and allows you to feel in control of your CF care.  As I tell many parents to CFers they are the ones who are setting the foundation for their children for years to come! It seems like Julia hit the parent lottery and sibling lottery!! 

Julia is just full of wonderful advice and perspectives.  I really like what you had to say about going after your dreams! "Go after your dreams full force and don't let the definition of cystic fibrosis define your life!"  Well looks like you are a great example of that quote Julia! 

I wish you all the best this coming weekend as you battle to be crowned Miss. New York!! 

For more interviews with members of the CF community click here.  

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 

SOCIAL MEDIA SITE: RebeccaRunyonBryan.com

http://www.youtube.com/v/Eqrr8Sqxi_w

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. RebeccaRunyonBryan.com.

http://www.youtube.com/v/Eqrr8Sqxi_w

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?

Pain

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.  

http://livingmydreamswithcf.blogspot.com/p/cf-community-interviews.html