Tuesday, May 27, 2014

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:


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.  




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