Andy Lipman's Blog, page 13

Painting Her in Color

Three moments from my daughter’s first weeks are imprinted on my heart forever. The moment she first opened her eyes. The warmth of her first breaths on my cheek. And the moment the pediatrician spoke the two words that would change our lives forever. Cystic fibrosis.

Six years later, my daughter is one of the strongest girls I know. She swallows fistfuls of enzymes at a time, straps her vest onto her friends to show them the jiggles, and has learned to subtly flee when someone nearby begins to cough. She tells the wildest stories, slays at hide ‘n seek, and is a quiet friend to all. In short, my daughter is pretty amazing.   

One of my biggest passions is conveying the importance of not defining my daughter by her health. I never knew how strongly I felt about this until a local Radiothon interviewer referred to my daughter as “sick” over and over. What is like to have a child who is sick? How does being sick affect your daughter’s routine? Etc. 

Each time he said the word “sick,” I felt my jaw clench and my heart scream. Yes, my daughter has cystic fibrosis. Yes, she takes medicine and does daily therapy to help her lungs stay healthy. But to summarize her grins and giggles and whispers to the moon with just one word? That’s just too limiting.  

I know the interviewer meant no harm, but I left that experience filled with the desire – no, the need– to make sure my daughter’s life isn’t always so singularly defined.

Cystic fibrosis is an important part of my daughter’s life. But it alone is not who she is. Defining her by her CF – or centering our family life solely around her health – is like capturing black and white alone in a world full of color. 

My daughter loves Minnie Mouse, dancing with friends, going to school, searching for ladybugs, and telling stories. She also is living with cystic fibrosis. 

And me? I’m going to paint her in color.

If you are the parent of a child living with CF and feel the same way, check out my new site www.paintherincolor.com. It is the first web site of its kind to offer emotional support to parents of children with special health care needs. 

With a weekly blog, emotional support resources, and tools for better communicating with care teams, we help parents and other caregivers paint their children in color. What does this look like in practice? Embracing everything we can to help our children lead long and full lives. Refusing to define our children solely by their health. Balancing daily care with the unexpected messiness and vibrancy of childhood. Nurturing the blessings that come alongside the battles. And learning to treat ourselves with kindness. 

Visit www.paintherincolor.com to learn more.

By Laura Spiegel, Mother and CF Warrior

facebook.com/paintherincolor twitter.com/her_color

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Fear Set in

Having Andy as our son has totally changed our lives—for the BETTER.

Andy was born in September of ’73 weighing 10 pounds and 10 ounces and was a month late, large and adorable. He had the same blockage that his sister was born with.  So, of course, fear set in.

There was much to learn in those first few months, but we were determined to get it right and give Andy the life that he deserved.

Andy loved animals and had a very special relationship with his dog, Howard, who was very special to all of us.

He did well in school with the exception of a few mean boys in the 5th grade, who gave him a bit of a hard time. He participated on the high school tennis team and was a talented player.

The school years were difficult for us as parents because of the risk of Andy catching colds or the flu. We tried to be as careful as possible without being overbearing. You can imagine dealing with ordinary teenagers, but with cystic fibrosis, there was added tension.

We did our best not to focus on the disease, but as parents, it wasn’t always easy.  We tried to make Andy’s life as normal as possible and did lots of fun things as a family. I am sure he did not always see it that way.

Andy is so full of love and goodness and has grown to be an amazing son, husband and father who cherishes his family.

He has changed the lives of many individuals, both with and without cf.  He gives of himself every day of his life. We are truly blessed to be his parents- 

Eva Lipman  Aka- “Andy’s Mom”

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It Was Personal- Peachtree Roadrace 2019

This year’s Peachtree meant a lot to me but a lot of that has to do with 2014. That was the first and only year I could not run the entire Peachtree. I was breathless for most of the race coughing up mucus. I kept trying to run but had to walk again and again. I finished in 80 minutes which I’m not saying is a bad time for anyone but it wasn’t what I expected of myself. That evening, I saw my time on the website and a friend of mine asked me if I gave my race number to someone out of shape or older because that’s not a common time for me. I was hurt but I knew he didn’t mean it as a jab. Still, this became personal. Me versus the Peachtree Road Race.

A few weeks later, I learned that I was dealing with a lung exacerbation and that was likely the cause. I went on IV’s for five weeks and finally kicked it. But what I didn’t kick was the feeling that my running times were getting slower and slower and that wasn’t like me. I am a competitor and I was not accepting the fact that I was declining. That couldn’t happen anymore. I started slowly getting back into running but not once or twice a week like before but three or four days a week and soon every day. I went from running 3 to 5 miles a week to 10 to now 15 to 17. I went from a 13-minute mile to a 10-minute mile and now around a 8:30 pace.

This was personal.

There were a lot of cool things at this year’s Peachtree but the most spiritual one was when I was in my group prior to the race wondering if I should really go for a sub-one-hour 10k, something I’d never accomplished. A woman suddenly came over to me and asked, “Are you going to run this race in under an hour?” I nodded and thought “How did she know?” She said “I’ll stick at your pace then. That’s my goal.” I immediately thought this could be the work of my older sister Wendy telling me to go for my goal…and so I did.” 

Speaking of sisters, I managed to see my younger sister Emily right before we started which was awesome. We’d never seen each other before a race. There are 60,000 people after all. She did amazing today. Then about 400 yards from the finish line low and behold I saw Andrea. Somehow we managed to be together for the last tenth of a mile. How crazy is that? She’ll tell you I still sprinted out ahead of her but I did find her immediately after the race. Hey, I had a goal to reach. 

It was personal.

Today I changed my strategy. I usually start slow and gain steam towards the end. This year I started fast and maintained my speed. I never moved to the side for water and didn’t stop to run in place and take pictures with my family at the 2.5 mile mark like usual. I did wave at them and yelled “I’m going for it!” but they didn’t see me so of course I felt bad. But I couldn’t turn back as I had a goal to reach.

I ran the Peachtree Road Race this 4th of July (2019) in 56:08. An improvement of 24 minutes or 30% from 2014. My first sub-one-hour Peachtree which was special because it was the 50th annual Peachtree Road Race and because I never forgot 2014. 

And of course because it was personal.

Live your dreams and love your life.

Andy

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Someone Like Noah

I was born with cystic fibrosis and wasn’t expected to make it to adulthood. Yet here I’m 45 years old and you’d think I’m 100% grateful for these three extra decades plus.

Well, I’m grateful but 100% is impossible because of one thing. Survivor’s guilt.

The other day I learned that Noah McFall of Candler, North Carolina passed away. I learn about people passing with cystic fibrosis all the time and sadly unless I was very close with them it doesn’t affect my day but only for a few moments.

When I learned of Noah’s death (I refuse to say passing because that sounds too gentle), I was really hurt. Why? For starters, he was ten years old. Ten!!! The age most of us have just learned to ride a bike. The age many of us have yet to attend middle school. The age of f’ing innocence. Not for this guy. He battled all his life and took his last breaths the other day. I often hear “Things happen for a reason.” Well, sometimes I believe that. In this case, I don’t. The only reason this happened is because we don’t have a cure for cystic fibrosis.

Granted, we have breakthroughs and more coming but none of them would have saved Noah’s life. Only a cure would. (Noah was on the waiting list for new lungs and a new liver and that may have saved his life too but for how long? We don’t know.)

I’ve written about my guilt regarding my sister Wendy who only lived 16 days because of this disease. The only blessing for her was she likely didn’t remember a thing. Noah did. He suffered and it breaks my heart for him and his family. I know my blogs are generally positive but in this case I want to be real. I’m pissed.

Noah’s passing and my survival guilt are not going to slow me down. They will only push me to work harder and want to live more. I only hope there’s a cure in the next few years. Not for me so much. But for kids who want to live their dreams with cystic fibrosis. Someone like Noah.

Live your dreams and love your life.

Andy

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Shedding Light on the CF Diet

Shedding Light on the CF Diet and How I approach this High-calorie, High-fat Lifestyle with My Patients

— Paige Riley, RD, LDClinical Dietitian II, Emory’s Adult Cystic Fibrosis Clinic

Cystic fibrosis is a “hypermetabolic” disease, meaning the disease itself uses A LOT of energy (in the form of calories), and the body needs an abundant amount of daily caloric intake just to maintain normal bodily functions. Someone with CF uses about double the amount of energy as a non-CF person of the same age, weight, and height just to BREATHE in and out. 

CF also causes a lot chronic inflammation in the lungs, which requires calories for repairing and rebuilding the damaged tissues. On top of that, about 90% of CF patients have exocrine pancreatic insufficiency (EPI), where the pancreas does not excrete digestive enzymes that are vital to the proper breakdown and absorption of nutrients and calories from food. CF patients with EPI take oral enzymes by mouth daily with every food and snack to help with the digestion and absorption process. But if you ask any CF patient taking these, enzymes don’t always do their job correctly, requiring patients to eat EXTRA food to make up for the calories and nutrients that can get lost in their bowel movements.

All of that being said, the CF diet focuses on high-calorie, high-FAT intake. Per gram, fat has about 9 calories, whereas protein and carbs only have about 4 calories. A CF patient (especially when exacerbated by difficult breathing and other episodes) is prone to weight loss because of the conditions above PLUS increased inflammation and fever (requiring more calories to maintain body weight) from the infection. A high-fat diet supplies CF patients an adequate amount of calories without a ton of volume taking up room in their stomachs. 

For example, a ¼ cup of any type of nut is about 160 calories, which is a very small volume and provides good fats, protein, fiber, and other vital nutrients to CF patients like vitamin E. To get the same amount of calories from broccoli (which is a carb), a CF patient would have to eat almost 5 cups! Not to discredit the benefits of eating broccoli, but in order to maintain adequate weight and make sure CF patients eat enough food, we focus on high-calorie, high-fat options such as: 

Whole milk/heavy cream in their cereal, coffee, oatmeal, baking, etc.2 tablespoons of olive oil or butter (about 200 calories) on potatoes, pastas, vegetables, and even meatsDouble meat, cheese, and avocado on sandwiches with extra mayo on thick bread slices Full-fat yogurts, cheese, and other dairy products3-egg omelets with sausage, cheese, avocado, and extra butter or olive oil4 tablespoons of peanut butter (about 400 calories) on PBJ sandwichesUsing oral nutrition supplements (Ensure, Boost, Kate’s Farms, Scandishake, ENU, etc.) when taking vitamins and other oral medications instead of water for sneaking in added nutrition and calories

High-fat foods also provide an extra source of fat-soluble vitamins A, D, E, and K, which CF patients tend to be lower in since they can lose a lot of fat through their stools. CF patients are required to take these “ADEK” vitamins in the form of a supplements every day for maintaining adequate levels. Taking these vitamins with high-fat foods (and enzymes, of course) help these nutrients absorb better. These vitamins are vital to the health of CF patients, considering that vitamins A and E are powerful antioxidants that can combat inflammation in the body, and vitamin D is extremely important in preventing bone disease and has been shown to help improve immunity.

This might sound like a “dream diet” to the non-CF population, but CF patients sometimes feel “food fatigued” or develop food aversions from having to eat so many calories in one day (anywhere from 2,500-4,500 depending on the age, weight, and height of the individual). CF patients have A LOT of daily requirements and treatments in order to stay healthy, including but not limited to twice-a-day airway clearance, that can take almost an hour each to complete; oral enzymes with all food put into their bodies; endless amounts of oral medications multiples times per day; and on top of that, high-calorie meals and snacks multiple times per day. 

CF maintenance is a full-time job, and eating can begin to feel like another task in this endless day of CF requirements, especially if the CF patient is not feeling well or on the verge of an exacerbation. No one likes to eat 4,500 calories when they feel sick or have a fever, including CF patients. So high-fat foods also offer the benefit of being low-volume and nutrient dense. CF patients can keep a jar of nuts or nut butter by their desks or Boost Plus cans in their backpacks or workbags for a high-calorie, low-volume snack between meals. 

Each CF patient is different in how he or she eats and what the patient’s preferences are, so it’s hard to give examples of what EVERY CF patient should eat in a day. The focus should definitely be on high-calorie, high-fat options, full of vital nutrients that have been explored and discussed with his or her CF dietitian. 

I hope this gives you some insight on the role of CF dietitians and how we help maintain weight in our patients without creating food fatigue. The CF patient is very complex, including when it comes to diet, so please don’t hesitate to reach out to me with any additional questions. As you can see, I love my job and talking about CF.

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I Did It! I watched Five Feet Apart

My take on of Five Feet Apart – The Movie

As you know from my previous post (Why Im Not Ready), I did not see the movie Five Feet Apart(in theaters). However, after reading the book, I made sure to rent the DVD as soon as it went to Red Box. By reading the book, I knew what I was getting myself into making the thought of sitting through it less intimidating.

First off, there will be no movie spoilers here for those who have not seen it. The movie is directed by Justin Baldoni and stars Haley Lu Richardson (Stella) and Cole Sprouse (Will). It tells the story of two CF patients who fall in love despite the strict complications of their relationship. With cystic fibrosis, it is a general rule that people should not be within six feet of each other. So why the name Five Feet Apart? Well, you’ll have to read Rachael Lippincott’s book or watch Baldoni’s movie to find that out.

What I liked about the movie is seeing Claire Wineland, who also is featured in The CF Warrior Project. In fact, Claire was one of the main inspirations behind the movie. I don’t know if it was on purpose or not but Stella was Claire. I’m not even talking about the CF part. I’m talking about her zest for life, her social media magnet status, her familiarity with her drugs, and her closeness with the hospital staff. Will’s character reminded me of Jack Dawson from Titanic in that he was a good-looking guy who puts off one personality around everyone else, but uses his “unusual charm” to reel in Stella. Okay, perhaps those are a few spoilers right there. Sorry.

The difficult part of watching the movie for me was hearing all the coughing and seeing all the difficult times both patients experienced. Knock on wood, I’ve been pretty fortunate, but things can always turn on a dime with CF. My wife Andrea, watching the movie with me, admitted we are lucky I haven’t had some of the rough times these two individuals have experienced. Part of me is happy about that. Part of me feels a little guilty about having been luckier than most. I know I work hard and take care of myself and have had some rough times, but a part of me always feels like I don’t have a right to be included with some of these CF warriors who have been through the most difficult times. It’s almost a form of survivor’s guilt.

Anyway, the movie and book are extremely similar other than the endings. I would say the movie is a cross between Titanic and The Fault in Our Stars. It’s not one of those movies that you come out of saying “I’m going to take on the world.” Or at least that’s not how I felt seeing it. For me, the lesson was that we shouldn’t judge other people’s choices because everyone’s story is different. We are all dying whether we have a terminal disease or not. It’s up to us to seize the moments and determine what, the moment means for each of us.

On a final note, I hear a lot of people say the movie made money and did little for CF. Listen, I don’t know how much money was raised directly from the movie, but I do know that it raised serious awareness and indirectly will contribute to more money being raised. For these reasons, I am very grateful to Justin Baldoni, Rachael Lippincott, and the entire cast of the movie. I also want to say thank you to Claire. She inspired this movie. Though she died last year, her legacy lives on through her videos, her foundation, and this film. Claire, we never met in person, but I consider you a friend and even though you were much younger than me, I still see you as a role model and a hero.

Live your dreams and love your life.

Andy

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Still No Cure

If Cystic Fibrosis Was Cured

The new triple-combination drug almost set for potential global/FDA approval will introduce many of us with CF to a new world of breathing better, and less IV antibiotics and flare-ups. It’s a world many of us never envisioned seeing. 

Yet, there STILL is not a cure for cystic fibrosis. However, this got me thinking…What would I do if CF was cured?

It’s not a question I pose often because 1) it gets my hopes up, and 2) it just seems unrealistic because of all the damage my body has already incurred over the past 45 years. In a perfect world, where CF is curable, I wouldn’t know what to do with my time. Every day I’d get three hours back from not having to do treatments. No more need for carrying a pill bottle with me at all times. Traveling would no longer include lugging my high-tech equipment around. There would be no more doctor appointments or taking PFTs.

If CF was cured, the first thing I would do is take a trip with my wife. Maybe we’d take the kids. Depends on what kind of mood I’m in. Ha! Ha!

I guess I’d have to figure out how to use Wish for Wendy for continuing to help those with chronic illnesses. I’m not going to focus too much on what I’d do if CF was cured because we are not there yet, but one thing is for sure, the announcement on May 30th about the new drug gives me hope it could one day happen.

What an amazing way to end a month of raising hope and awareness for CF! We are excited for what that future will bring for the CF Warrior Project and the Wish for Wendy Foundation. Now let’s keep working to find that cure!

Consider making a donation today to keep fighting for a cure.

Live your dreams and love your life.

Andy

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CF and Fatherhood – Happy Father’s Day ​2019

Men with cystic fibrosis aren’t often fortunate to hear the word “dad” when someone is referring to them. About 98 percent of all male CF patients are infertile due to a blockage or absence of the sperm canal called the vas deferens which is a long tube that carries sperm from the testicles through the male reproductive system. The absence of sperm in the semen makes it impossible to fertilize an egg.

There is a difference; however, between being infertile and being sterile. Even though the vas deferens is blocked or nonexistent, the sperm is there, and 90 percent of CF patients produce sperm normally. This means that a great majority of males with CF can still have children with fertility assistance.

So basically to put into terms that are far easier to understand: my kids can swim but they need outside help to get them to the pool. 

My wife and I went through fertility and specifically TESA which means both Andrea and I each had procedures (hers far more invasive) to enable to the possibility of having children. It took several attempts before Andrea was pregnant with Avery and another few before Ethan came into our lives. 

So when Father’s day rolls around each year, I am not only grateful for my amazing father and the positive influence he has had on my life, but for my own children. On this day and every day I am so grateful for the opportunity to be the father to not only one but two biological children.

Happy Father’s day to all the Dad’s out there, we truly are blessed.

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Who Has Cystic Fibrosis?

Cystic fibrosis is an invisible disease. However, there are ways to tell if someone has CF through some stealthy observation. Below are 9 ways to determine if someone you meet has CF. 

These are a little tongue in cheek for our CF warriors — a little CF humor — but the reality is, CF takes a toll on the body and impacts lifestyle in many ways that aren’t always obvious to the layperson, or mimic other illnesses. To help our CF supporters who don’t have CF, we’ve added a brief explanation after each observation.  

1. The person before you on the treadmill departs. You get on right after him and there is salt all over the handles and screen. The person before you likely has cystic fibrosis.

While everyone can have salt residue on their skin during an intensive workout that causes them to sweat, especially if they don’t drink enough fluid, those with CF have an inability to regulate transport of chloride (a salt component) the way other people do. It causes the ultra-salty sweat CF patients, a dehydration risk.

2. You’re at a bar and there are four people that look drunk. The guy at stool one has a bottle of scotch. The guy at stool two has a bottle of gin. The guy at stool three has a bottle of vodka. The guy at stool four has a box of Pulmozyme®. The guy at stool four likely has cystic fibrosis.

Pulmozyme® (dornase alfa) is a synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis to improve pulmonary function. It can cause temporary changes in speech and voice.

3. You’re at a nice restaurant and Jim wore a suede vest, Larry wore a tuxedo vest, and Seth wore a Hill-Rom vest. Seth likely has cystic fibrosis.

Hill-Rom is a company that specializes in a variety of medical devices, including mobile vest airway clearance systems used by CF patients. 

4. Daniel is 90 and takes 10 pills before a meal. Barry is 80 and takes 6 pills before a meal. Jodi is 25 and takes 15 pills before a meal. Jodi probably has cystic fibrosis.

While elderly people these days take an average of 10 pills to take daily, this is not the norm for a healthy young person. CF patients take between 10-30 pills daily on average, with some taking more. This is in addition to the breathing treatments beginning immediately upon waking and throughout the day. 

5. Richie ate 2,000 calories at dinner and weighs 400 pounds. Jasmine ate 2,500 calories at dinner and weighs 350 pounds. Devon ate 7,000 calories and weighs 150 pounds. Devon may have an incredibly high metabolism, but unless he is a professional athlete, he likely has cystic fibrosis.

The ongoing obstruction of air passages and buildup of mucus can lead to recurrent infections, irreversible lung damage, and other serious complications such as malnutrition, diabetes, and more for people with CF. There is a long list of conditions common for those with CF that could affect weight gain. 

6. Butch smells like saltwater and has a surfboard. Jeff smells like saltwater and has his swim trunks on. Tom smells like saltwater and has a nebulizer. Tom likely has cystic fibrosis.

Salt residue stays on the surface skin of those with CF and is especially noticeable in hot weather.

7. Joel has a stamp from a nightclub on his hand and says he’s been clubbing. Pete has alcohol on his breath, comes home at 3 a.m. and says he’s been clubbing. Tony’s finger and toenails are soft, look like upside-down spoons, and he says he’s been clubbing. Tony’s clubbing isn’t much fun because he has the best odds of having cystic fibrosis.

Nail clubbing is enlargement of the fingertips (or toes) due to proliferation of connective tissue between the fingernail and the bone, creating the inverted spoon look and white nail beds. “Sponginess” of the nail bed beneath the cuticle can make the nail appear to be floating. Clubbing can occur as a result of CF and other pulmonary damage.

8. Brian ate a really greasy meal, gets an upset stomach, uses the restroom and 10 minutes later no one knows the bathroom was even used. Jeff ate a fatty snack, gets a stomachache, uses the restroom and 10 minutes later no one suspects anyone had occupied the restroom. Scott ate an entire pizza, gets an upset stomach, uses the restroom, needs a plunger, hits the fan, uses 2 bottles of pledge, the fire department comes, the house is evacuated and Scott does the walk of shame out of the house. Scott likely has cystic fibrosis.

About 90 percent of people with CF have sticky mucus that blocks ducts in the pancreas and prevents enzymes from reaching the small intestine to digest food. The undigested food in the intestines can cause loose, greasy, floating stools or constipation and blockages.

And finally:

9. Graham asks John if CF and asthma are the same thing. John says, “I don’t think so.” Brian asks Lucas if CF and asthma are the same thing. Lucas says “No.”  Kevin asks Tyler if CF and asthma are the same thing. Tyler considers keying Kevin’s car. Tyler likely has cystic fibrosis.

Cystic fibrosis is a hereditary terminal disease that can lead to other life-threatening issues, and requires rigorous daily treatment. The cause of CF is a lack of a gene sequence that causes the airways to be clogged with thick secretions and at this time there is no cure. It also affects the sodium levels in the body and the ability to absorb nutrients, often leading to malnutrition. Asthma is a reactive airway disease that can be present at birth or occur at any age due to an environmental pollutant. While it can be severe enough to cause death, especially in the elderly or poor, Cystic Fibrosis is a much more severe chronic disease, with an average life expectancy of less than 40 years in the U.S.  

Donate to The CF Warrior Project today and order your copy of the CF Warrior Project to help us raise hope and find a cure for cystic fibrosis. 

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CF Independance​ Day: Peachtree Road Race 2019

On the 4th of July, most Americans spend the holiday celebrating America’s independence by attending a parade or sleeping in and enjoying a day off of work.

For the past 22 years, I have spent my 4thof July running the world’s largest 10k, The Peachtree Road Race. This year will be the 50th anniversary of the race and my 23rd consecutive run.

While on this day every year we celebrate our great country’s independence from Britain, I am also celebrating my Independence Day from cystic fibrosis.

I never used to run, I hated it. I could barely go a quarter of a mile without labored breathing and fatigue.

During my worst times in college, I didn’t even have the strength to walk to class. I started failing out and stopped doing my treatments, and got extremely ill. It was then that I realized that working out and running were two ways to combat my disease. 

I began running a little bit towards the end of college but still had no plans to run a long race let alone the Peachtree Road Race 10k.

My Uncle Bobby was an avoid Peachtree runner. He had completed the race more than 20 times. When I was younger he would encourage me to run, despite my lack of athletic ability in the 4thgrade. I hated running then but eventually I started to train with him.

In 1997, I finally started training on my own. 

I wanted to run the Peachtree Road Race to see what all the hype was about. It is the largest 10k in the world after all!

Some days were tougher than others as running the various hills in the Georgia heat is hard enough, but doing it while having a lung disease is difficult. 

Despite my setbacks I managed to train enough to feel ready to run alongside my uncle. That same year I ran my first Peachtree Road Race and haven’t stopped since. 

What do I love about the Peachtree Road Race, you might wonder? 

The crowds are amazing.



The other runners are inspiring. 



And the feeling of going one on one against CF is invigorating . 

Last year I ran the race in exactly one hour, which was my best time to date. This year I’m shooting for a sub one hour finish! 

I run a 5k nearly every day and feel myself becoming stronger with each run. I feel the benefits it has on my overall health and lungs throughout the year. 

Yesterday I got my racing number. On July 4th, I plan to have CF’s number.

Live your dreams and love your life.

Andy

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