Andy Lipman's Blog, page 12

What Does Diet Have to do With Cystic Fibrosis?

Did you know that one of the symptoms of having cystic fibrosis is malnutrition? Yup, you heard it! Individuals with CF (like me) don’t absorb all of our calories from the foods we eat. Because of this we do not get the vital nutrients our body needs requiring us to take in far more calories per day than the average person (without CF).

I know. I know. People don’t generally feel sorry for us when it comes to eating as much as we want… but the thing is as fun as not having to restrict our bodies of calories may seem it is far more serious than eating that extra donut. 

If someone with CF goes go a few days eating a lot less calories than their body needs, it can have a detrimental effect on their health. We have to take enzymes for any meals with fat and the amount of enzymes depends on the amount of fats we eat. No, we don’t have a calculator to figure it out. Like anything else, it just becomes second nature.

Carrying a pill bottle around with me is the only way to ensure I have what I need to eat throughout the day. It’s not a wonderful feeling knowing I take more pills than my 95 year old grandmother. It just makes me feel different. Often you’ll see me put my hand to my face before I eat. It is a habit of mine and a way to “hide” the fact that I have to take so many pills.

The funny thing is I still do it around my family and friends who know I have CF. It’s just a habit. I will admit… it is super exciting sometimes knowing I can eat a lot of food and not gain a tremendous amount of weight. Hey, we got to get something out of this horrible disease, right? At the same time, like everyone else, I need to be smart about what I put into my body. 

I’m not just sitting at home eating chocolate pudding, donuts and ice cream…I drink protein shakes, nutritional bars and I try my best to avoid caffeine and fried foods.

So as you can see, it’s not easy keeping this girlish figure. LOL! 

Live your dreams and love your life.

Andy

More about diet and CF as my dietitian Shedded some Light on the CF Diet.

Consider making a donation to the CF Warrior Project! All proceeds will go to the Wish for Wendy Foundation and be disbursed across many CF charities.

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3 Reasons Why I LOVE Having Cystic Fibrosis!

A lot of people share their disgust for cystic fibrosis on social media. I get it — but I don’t necessarily do it myself. CF is part of me. It’s not the part of me I enjoy the most, but it’s part of me, so how can I hate it? 

I was born with CF, and it was supposed to claim my life at a young age. To my surprise (and I’m sure yours) I am going to tell you three reasons why I LOVE having CF!

1. Cystic fibrosis gives me the opportunity to be a role model for the next generation. I can speak up on behalf of many others who might not have the ability to do so. Without CF, I likely would have never had the platform for inspiring and sharing with so many people.

2. CF gives me an appreciation for working out. I don’t think I’d have an appreciation for living a fit life without cystic fibrosis. And those amazing after-workout smoothies that I can devour without worrying about putting on too much weight. Thanks CF!

3. CF makes me feel like a bad a$$! Every single day, I fight for a healthier life and a longer future. I appreciate each breath and every moment, and I’m crushing it!

So I don’t hate cystic fibrosis. As a matter of fact, I kind of like it. Well, not “it” really, but I like kicking its a$$ and living my best life. Having CF has motivated me to be a better person. 

Live your dreams and love your life.

Andy

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BreatheCon 2019

What does making every breath count mean to you? On September 20 and 21, connect with hundreds of other adults living with cystic fibrosis at BreatheCon: a free, online-only conference to discuss experiences unique to life with CF in small video breakout sessions, group chats, and workshops. 

Tomorrow our founder Andy Lipman, will be participating in the CF Foundations BreatheCon! This online conference kicks off on September 20th 2019 at 7pm Est. Andy will be participating in the Comedy Show from 9:15-9:45pm Est.

“Life with CF is never easy, it’s inconvenient, exhausting, frustrating, and way too serious. So how do you lighten the mood? How about with a joke or two! Humor is a coping mechanism used by many in our community… join us for a live stand up comedy show as these amateur and veteran comedians take the mic. After all, laughter is the best medicine!”

So Make sure you register and join Andy, along with many other noteworthy #CFwarriors !

If you have not already make sure you pick up a book today to read more inspiring stories of CF Warriors fighting the odds and winning!

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Rock CF – Emily Schaller

CF Warrior Emily Schaller Founder/CEO- Rock CF Foundation gives us inside look into the CF Rock Foundation.

Rock CF is a community thousands strong, changing the face of what living with cystic fibrosis looks like and giving those living with CF the tools to not only survive, but thrive .

In 2007 I ( Emily) founded the Rock CF Foundation as a 501c3, but we informally started hosting rock and roll shows for CF in 2004. At the time my oldest brother and I were living together, both immersed in the Detroit rock scene. He was playing guitar in a local band and I was helping them out itching to get into a band myself. After years of attending local CF benefits my brother and I decided to spice up the CF event circuit and do a rock show to heighten awareness and raise some funds. The first concert in 2004 was a success and from there I was super inspired. I wanted to do this all the time. Plan events, raise awareness and help the CF community. 

Later that year I finally got my dream of playing drums in a band with four of my friends. We continued doing these unofficial Rock CF shows annually while also playing shows two to three times a week in clubs around Detroit. While all of this was great, my health was not keeping up with the party lifestyle I was living. Being in smoky bars for hours on end several times a week, early morning bedtimes, and not keeping up with my meds was really taking a toll. My hospitalizations were increasing, my lung function was decreasing and my health was slipping away, right in front of me. 

South Normal, Just Let Me Breathe 2006, Royal Oak Music Theatre, Royal Oak, Mi, 02/24/2006



About the time Rock CF was officially designated as a nonprofit was around the time I decided that I needed to do something about my health.

I did the math in my head and thought I should do my meds more regularly, but I also needed to do something bigger. That was exercise. Block by block I built up to being able to run a mile, then two, and then three. At the same time I also began cycling and started annual fundraising and awareness bike trips.  I was finally in control of my life.  

Being on my new path with exercise, eventually brought my time as a drummer and rock and roller to an end.  The mission of the Rock CF Foundation followed my lead and naturally shifted from using music as a tool, to using exercise as the tool to inform audiences about cystic fibrosis end engage the CF community. 

It took a few years for us to get our “legs” and figure out just what we were going to do and where we fit in. Of course we are still evolving and learning, but our main focus today is to empower others with CF and give them the tools lead a healthier life. Through programs like Kicks Back, we donate brand new running shoes to people living with cystic fibrosis. Some may be starting where I started back in 2006, getting off the couch, while some may be experienced runners who just need new kicks to keep them outrunning CF! Since 2014 we have mailed out over 650 pairs. 

Though I may not be in a band anymore my love of band merchandise helped spark the internationally recognized line of Rock CF gear. Our merch is sold online and CF awareness is being shipped all over the world.

My dream has come true. I am able to do what I love every single day and am inspired constantly by other CF warriors and families. We are approaching an awesome time for the CF community. I have never been more excited to see how lives will change with the new treatments on the horizon. We will all be learning how to navigate this as we go, and Rock CF will be there every step of the way! 

Read more of Emily’s story in the CF Warrior Project Book a portion of the proceeds will benefit the many amazing charities and foundations started by the CF Warriors in the book.

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Eclipsing the Life Median – My 46th Birthday

My birthday has never been something of a big deal for me. It’s not that I don’t appreciate the fact that I’m getting older despite what experts called “a childhood disease” when I was born. I love getting older, getting grayer and surpassing milestones. The thing is I celebrate every day — one has no more importance over the other when it comes to cystic fibrosis.

Celebrating days and eating potato chips are very similar. One is never enough.

It’s not like I can sleep in because it’s my birthday, or skip my treatments, meds or workout routine. CF doesn’t care if it’s my birthday. The disease is relentless.

This year, once again, I declare victory over this disease. I ran my 23rd consecutive Peachtree Road Race; spent plenty of time with my wife and children; and worked very hard to combat this disease. I got to be an assistant coach for my daughter’s team and a head coach for my son’s team, and hope all the children I spent time coaching learned a lot and had fun.

Over the last 365 days, I have done more than 50,000 minutes of vest therapy, and spent 40,000 minutes inhaling aerosols on a nebulizer. I also have taken 14,600 pills, mostly composed of enzymes for digestion. I’ve run 850 miles and worked out every single one of those 365 days. I can proudly say I’ve never skipped a treatment or an enzyme.

I’m grateful for the support and the positive publicity The CF Warrior Project received from the online community and I’m thankful to everyone who participated in it. Calling myself a CF warrior and putting myself in the same company as each of these people, as well as the 70,000 others in the world who fight this disease, is an absolute honor. I’m also proud of the success Wish for Wendy Foundation has experienced. We raised another $400,000+ in the last year for the Cystic Fibrosis Foundation, and have eclipsed the $4 million mark in memory of my sister.

With CF, birthdays take on a very special role especially once you have eclipsed the median life expectancy. On the other hand, I also know each year I get older, CF will get tougher. But newsflash: I’ll get tougher too. I relish the underdog role and will continue to do so as we fight this disease day in and day out, whether it’s my birthday or any other day for that matter.

Live your dreams and love your life.

Andy

Consider Donating to the CF Warrior Project in honor of another trip around the sun!

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The CF Salt Life

Like most people, I enjoy vacationing at the beach with my family so we can benefit from some sun and waves together. However, unlike most people, a trip to the beach is more than just a way to recharge and spend time with my family. The mental therapy of relaxation and the calm the beach brings most people is more than mental for those of us with CF. For us a trip to the beach is not only mentally therapeutic, but physically beneficial.

In the early 2000’s a study proved that people with cystic fibrosis actually show signs of improved breathing thanks to saltwater. This was discovered because surfers with CF in Australia reported they had fewer symptoms thanks to spending time in the saltwater. The CF Foundation supported the study and this led to a drug called hypertonic saline, which I have been taking for nearly two decades. 

It also means that our beach trips benefit my health and wellness. What a great reason to enjoy some family time on the beach right?

My family and I just returned from a week-long beach trip in Hilton Head. It was amazing having a full week to take some deep breaths of the salty air. CF comes with lots of struggles and difficult times, but I would definitely say spending time on the beach and jumping in the saltwater is a definite perk!

Live your dreams and love your life!

Andy

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Not About the Number of Years

Life is not about quantity, nor is it about how many years you can live. It’s about how you live the years you are blessed to receive. There are people that pass away in their twenties that “live” far more than someone who lived to be 100 years old. Just read the In Memory section of the CF Warrior Project Book and it is apparent. It’s what you do in your life that matters.

I recently heard from someone whose grandson read “The CF Warrior Project” and was sad to see that someone died in their twenties. The thing is, people, die all the time and unfortunately, some die very young.

It has more to do with what you do in those years that matters. Someone like Claire Wineland spent the majority of her 20 years on this earth dealing with her cystic fibrosis, but during that time she developed a legacy. Even though she is no longer here with us, the work she did before she passed lives on.

Don’t be consumed with the number of years you get and how many times you get to blow out the candles. Instead, focus on how you spend your days here with us and make sure that when you’re gone you lived a memorable and full life whether that’s “long” or not.

None of us get an infinite number…

Live your dreams and love your life.

Andy Lipman

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I Want to Age Like Sea Glass – Loretta Morris Memorial Fund

In May I celebrated my 73rdbirthday with a round of golf at Sandpiper Golf Course in Santa Barbara, CA and then dinner at the Boat House restaurant on Hendry’s Beach. A great start to another year for someone ageing with CF. Yes; I am a CF Warrior who wasn’t diagnosed with CF until I was 64 years old. In spite of years of lung problems I had a successful career and live an active lifestyle. I had a rough month in June ended up needing oxygen to get up the stairs in my house, then in the hospital and on IV antibiotics for two weeks. I am fortunate to live on the Pacific Coast in Ventura, CA and I could still take beach walks even with PICC line in.  I am getting my strength back and enjoying my favorite activities: swimming laps, golfing and yoga. I am healthier now in my seventies than I was in my sixties. I was inspired by a poem by Bernadette Noll. 

As a CF Warrior I want to age like sea glass, “smoothed by tides, not broken.”

“When I am thrown against the shore and caught between the rocks and a hard place, I want to rest there until I can find the strength to do what is next. Not stuck — just waiting, pondering, feeling what it feels like to pause.  And when I am ready, I will catch a wave and let it carry me along to the next place that I am supposed to be. 

“I want to age like sea glass.  I want to enjoy the journey and let my preciousness be, not in spite of the impacts of life, but because of them.”

 lost my sister Loretta to CF in 1971 when she was just 21 years old. She died just a few months after we had made a trip from San Francisco, CA to British Columbia, Canada. In 2010I established in her memory, the Loretta Morris Memorial Fund with the Cystic Fibrosis Lifestyle Foundation (CFLF). The CFLF mission fits well with my own interests and I could help others living with CF through Recreation Grants for the exercise-based activity that my sister and I enjoyed: dance, horseback riding, swimming, yoga, and golf. I currently serve on the CFLF Board of Directors. 

Loretta Morris-1971 Crater Lake, Oregon

The Fund is supported by 60 friends and family members and has awarded 170 grants since 2010. The total funds disbursed for the grants equal $71,800. A few grant recipients are featured here.

De Anna – Age 54 – Vermont – Horseback Riding“I have never been so healthy and felt so good mentally. My riding lessons have given me new friends and a social outlet I never had before.”




Mary – Age 7 – California – Swimming    “I will take swimming lessons and learn how to take deep breaths and hope that will make my lungs stronger and I will be healthier.” 



Hailey – Age 17 – Arizona – Dance
“Dance gives me something to do that helps me keep moving. Exercise is a very important thing to do when you have CF. Dance is so much fun I don’t think of it as exercise but as an enjoyable activity.”

Additional information about CFLF and the Loretta Morris Memorial Fund is available at www.CFLF.org

By: Barbara M. Harison

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What Does Benjamin​ Franklin Have to do With Cystic Fibrosis?

ERROR!!!!!!!!!!!!!

From the time I was a toddler to the age of about 15, my parents had to administer postural drainage on me. 

What is postural drainage you might ask? 

According to cff.org: “Postural Drainage and Percussion (PD & P), also known as chest physical therapy (CPT), is a way to help people with cystic fibrosis (CF) breathe with less difficulty and stay healthy. PD & P uses gravity and percussion to loosen the thick, sticky mucus in the lungs so it can be removed by coughing. Unclogging the airways is key to keeping lungs healthy.”

My parents would cup their hands and hit my back, sides and front to loosen the mucus from my lungs. Not a very fun or exciting activity for both parties involved. 

When I was about 15 years old, I was introduced to the Hill-Rom vest, a vest that I would wear that provided the same therapy as the cupping and patting my parents had to administer. Manual postural drainage sessions were finally over. 

For the longest time, I did not think I’d be able to leave for college, get married or do anything on my own because of the necessity to do postural drainage therapy with my parents daily. With the problems of seeking independence gone, a new problem developed: the need for electricity.

My vest depended on electricity and I in turn depended on my vest to loosen the mucus from my lungs so I could cough it out. My worst nightmare is the power going out and not being able to do my meds. A few years ago I got the ultimate birthday present, a generator! Yes, I wanted one and it kicks ass. Now power outages are not an issue but there is still one other. Machine errors!

A few weeks ago I was traveling to visit family and when I went to turn on my vest to start my treatment and, I see it — the one word that scares the crap out of me: ERROR! The machine isn’t working! Everything hits me then. Crap, it’s Saturday. Nothing is open. It’s not like I can shoot by Walgreens and ask for another vest machine. I’m out of town and don’t have my portable vest with me. I thought about taking it in case but it’s tough enough carrying as much equipment as I do. 

The only thing worse than forgetting to bring your meds when traveling with cystic fibrosis is when your medical device malfunctions. There are still options. My wife learned postural drainage from my mom but I really prefer the vest because I’ve been using it for so long. 

I called the vest company, but it was closed. How is there not an emergency line? Vest companies really should have an emergency number to call when this happens. It also would be nice if they could create a vest that just won’t malfunction during trips and/or on weekends…

I messaged friends with CF who gave decent advice except one guy who thought it was funny to tell me to pray. Fortunately, after many attempts, my wife switched it to a different outlet and we eventually got it to work. I messaged back the guy who told me to pray and said “It worked. Thank you so much. Great advice!” Did I tell you sarcasm runs in my family?

I treated that machine as a house of cards for the rest of the trip. “Don’t touch the plug. Don’t touch the machine. Let me carry it everywhere as we travel.” Fortunately, my dad was able and willing to send me a portable vest as a backup through FedEx. 

These moments are frustrating and at times even scary. 

I decided I needed to have a backup plan for future malfunctions. For driving trips, I will now take a backup vest. For trips that require an airplane, I will make sure to check the hours of use on my vest. My latest one had been around two years of therapies, using it at least twice a day. It was bound to fail soon.

The important thing is that I survived and was about to swap out vests as soon as I returned home so I’m prepared for my next trip.

So thank you, Benjamin​ Franklin, for your wonderful discovery of electricity!

Live your dreams and love your life.

Andy

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A Child Without Limitations

From the time that Andy was born, Eva and I were concerned, worried, but developed and maintained an optimistic view of Andy’s future. We knew then as we know now that there will be a cure for CF during Andy’s lifetime and that we would live to see him as a healthy person free of the yoke of the disease.

So, with that optimism, we treated Andy as a child without limitations but always recognizing that we had to make sure that we exposed him to much of life while making certain that we do not unduly expose him to viruses and bacteria which could make him very sick in the short term and potentially shorten his life expectancy.

We refused to allow Andy to see himself as different. Or to not expose him to the fun things of childhood and life. We made sure that he played sports and that he developed athletic skills and a winning attitude for sports.  Fortunately, the athletic limitations that I have were not passed on to Andy as he excelled in all of the sports that he played.  Thought we did not know it at the time, we believe that the exercise and exertion involved helped minimize the disease in his formative years.

Of course, Andy from time to time attempted to use CF as reason not to participate in various activities.  Neither Eva or I were allowing it. If he tried to escape, we asked even more from him rather than succumbing to his adolescent urge to be lazy. I am sure he resents us to this day, but take great pride in assisting his using self-help to become the man he is today.

Although we supported, CF organizations, we kept him far from them so that he would not think of himself as a victim or one needing help, but rather to envision himself as a boy and young man with potential and the opportunity to live a full and productive life.

Charles Lipman -AKA “Andy’s Dad

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