Andy Lipman's Blog, page 9

Whatever It Takes

“Whatever It Takes” is the song from Imagine Dragons that I’ve been listening to most of the morning. Those three words have also been my approach to fighting this disease ( cystic fibrosis) for the last 46 plus years. This was going to be one of the biggest days of my life so far.

Today was my first doctor’s appointment since starting the life-changing cystic fibrosis drug, Trikafta.

I walked into the appointment optimistic after I was able to run 3.8 miles in 34 minutes without a single cough this morning. I did two therapies and also lifted weights for 30 minutes.

I got to the doctor’s office at 10:30 AM. My weight was up as expected. It’s normally around 175. Today it was 179. Good ole Trikafta. My blood pressure was down a little bit which was great because it is usually high predominately because I get nervous at the doctor’s office. It went from around 140/90 to 132/80. The rest of my stats were pretty good as I prepared myself for my pulmonary function test.

My goal was to hit 88% because I had scored 91% at home and my numbers at home are usually 3% higher than they are at the doctor’s office. I did the first PFT and it was around 88% or 3.50 Liters. I was happy but I also knew that usually the second go around I do a lot better. So I blew with everything I had and the numbers ballooned from 3.50 to 3.63 and 93%. That is the best I’ve had since my college days 25 years ago. I could not believe it.

At my last appointment in October, I was at 80% or 3.13 Liters and my baseline was 83% or 3.30 Liters. I just jumped half a liter and 13% in three months.

That is crazy.

I have never had that kind of increase in lung function without IV antibiotics and numbers that weren’t severely low to begin with.

The doctor said my chest sounded clear and that he is happy with how things are going. All I can say is that I am so grateful for Trikafta.

It has changed my life and I’m so glad it’s changing other people’s lives too. This makes me more adamant that we have to give people all over the world 100% access to this drug and we need to find drugs that can help 100% of the CF population including children under twelve.

I’m still shocked as I sit here in my car. This disease was supposed to take my life before I could go to college, get married or have children.

I am a CF warrior just ike 70,000 other people around the world. We just can’t give up, we need to do whatever it takes.

Live your dreams and love your life.

Andy

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Becoming a Man – Growing Up with CF

Thirty-three years ago this weekend, January 10, 1987, was my bar mitzvah. According to Jewish religion law, when a boy is 13 years old, he becomes accountable for his actions and becomes a bar mitzvah. Before the child reaches bar mitzvah age, parents hold the responsibility for his actions. After this age, Jewish boys have all the responsibility and obligation for Jewish ritual law, tradition, and ethics, and are able to participate in all areas of Jewish community life. 

Essentially it’s a Jewish boy becoming a man … and getting lifted into the air in his chair while songs like Hava Nagilia and Wang Chung play. (What? Nobody has heard Wang Chung at a bar mitzvah?)

What few people knew was that by then I was well aware of how long I was supposed to live.

I remember the videographer asking me what I wanted to do when I grew up. I told him I wanted to play for the Atlanta Hawks. (Actually looking at the team now, which owns the worst record in the NBA, I may have had a shot!) Truth be told though, I wasn’t sure I would grow up at all and that question, which had been asked by more adults than I can remember, haunted me those days. At that time, I thought I would die soon because of cystic fibrosis. 

It consumed me actually. Was this the last celebration I would have in my life outside of maybe a birthday or two? Would I graduate high school? Graduate college? Get married? Have kids?

Well, I don’t have to tell you that I was blessed to celebrate all these special occasions. To this day, I keep the small figurine from my actual bar mitzvah in my home. If you walked in my office, you wouldn’t notice it.

Yet, I can’t help but notice it most days. When I look at it, memory of my fears at that time come back, but I don’t consume myself as much these days with life or death. I look at it now more as feeling fortunate for being here and realizing why it’s so important to keep working to see the other celebrations in my life. 

We in the Jewish community consider bar mitzvah as a passage into manhood but the truth was I had already matured beyond my years. I was dealing with the struggles of life and death and here I was just entering puberty.

As I celebrate this year specifically with being on a new breakthrough drug, I pray that I continue to see every day as a true celebration—even if it’s unaccompanied by Wang Chung.

Live your dreams and love your life.

Andy

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Andy’s Workout Routine

Often I am asked what my workout routine is and how I stay motivated. Since it is a new year and with every new year comes those pesky “get in shape” or “get healthy” resolutions, I figured I would share my routine and some motivation. However, I do not believe in resolutions I believe in focusing on health and fitness year-round.

Let start with my workout routine:



12 reps of biceps x 8 sets (2 different exercises)12 to 20 reps of triceps x 8 sets (2 different exercises) 20 reps of legs x 4 sets 12 reps of chest (bench press) x 4 sets or 20 reps of chest (pushups) x 4 sets 12 reps of shoulders x 4 sets12 reps of back x 4 sets100 jumping jacks x 2 sets25 jump rope (speed single jump) x 4 sets (ending the last set with single legs of 6 on one leg, 6 on the other, then finish with both under)50 forearm squeezes x 4 sets20 reps of abs x 8 sets (2 different exercises)Running (3.5 miles Monday, 2 miles Tuesday, 2 miles Wednesday, 2 miles Thursday, 2 miles Friday, 1 mile Saturday, 1 mile Sunday) – I try to do 13 to 15 miles per week.



Now for how I stay motivated:

First off I don’t let the date determine when I’m ready to start. I change my day-to-day routine when I am ready, and also try to incorporate working out with my therapy. In other words, my therapy is not complete until I complete my workouts. I also find a show I’ve recorded (usually an episode of Dateline NBC) and watch it while I work out. Not doing the same exercises over and over also helps because otherwise working out gets too routine and boring. Generally, I don’t listen to music while working out. Television works better for me but music works for a lot of other people. While I usually run inside on the treadmill, occasionally I change it up, especially on a nice day, and go outside to run. I tend to run faster outside as opposed to the treadmill. Making sure to stretch before and after my workouts is also important. 

Some people say they stay motivated because it keeps them healthy and that’s true for me, but I also see finishing my workout as an accomplishment —I’m very competitive. I feel empty until I’ve gotten my workout in. 

Finally, develop your own workout and work your way up. If it’s too easy then it’s not effective. If it’s too hard, you’ll lose the incentive to keep at it. Find something in the middle and you’re ready. Take pictures when you start and at milestones along the way. You don’t have to post the pictures, but it’s motivating to see where you were before and where you are now.

I also love motivational quotes. They tend to fire me up.



Here’s my Top 5:

5. From the movie, “A League of Their Own”:  “Of course it’s hard. It’s supposed to be hard. If it were easy, everybody would do it. Hard is what makes it great.”

4. “Motivation is what gets you started. Habit is what keeps you going.”

3. “Someone busier than you is working out right now.”

2. “Obstacles can’t stop you. Problems can’t stop you. People can’t stop you. Only you can stop you.”

1. “Don’t limit your challenges, challenge your limits.”

I hope this helps. Good luck with your workouts!

Live your dreams and love your life!

Andy

Read more: Five Keys to Success in Stay Fit

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Life on Trikafta – The 90’s and Cystic Fibrosis

While growing up, I honestly didn’t sweat doctor’s appointments very much. (Perhaps sweat is not the right word since I have CF – LOL!)

Why? I guess it’s because I did not understand the significance of each pulmonary function test, blood test, X-ray, and sputum culture. In my teens and early twenties, I was generally around 90 to 110 percentile in my FEV1 (Forced Expiratory Volume in the first second) which is what doctors use to decide whether a patient is doing ok or needs a boost with IV antibiotics. I took those numbers for granted. It was like being the undefeated number one team in the country. No need to worry about the next opponent because I’d never been tested before. Now, that I am living life on Trikafta things are changing for the good.

That has changed over the last 20 years or so. I’ve had large dips in lung function, have been on IV antibiotics, and haven’t reached 90 percentile in nearly three decades. My FEV1 has generally been between 80 to 82 percent, has dropped as low as 65, and has been as high as 87. I work hard during my workouts doing chest, biceps, triceps, legs, abs, shoulders, back, jump rope, jumping jacks, forearms, and running one to four miles every single day. Most of the time during those runs I’m coughing three to four times per mile, and at least a few times while lifting weights.

Since starting Trikafta, my pulmonary function numbers have suddenly increased for the first time in years. I am running two, three and four miles while barely coughing, and I seemingly have an extra burst of energy with less need for rest during my workouts. I have gained a few extra pounds, feel overall stronger, and for the first time in a long time, I can take deep breaths.

Monday, January 13, I go see my doctor who will measure where my numbers are and whether I hit 90 or not. 

I’m ok with the results because I know I’m getting stronger. This past Saturday, I blew a 91percent FEV1 on my home Spiro PD monitor. My numbers at my doctor’s appointments are usually a few points less, something I blame on white-coat syndrome because I get very nervous when I go to the doctor. Still, I know I can finally hit 90 again.

This time I won’t take it for granted.

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Live your dreams and love your life!

Andy

Read more about my experience on the drug Trikafta here!

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23,400 Breaths in a Day

The average person takes 23,400 breaths in a day or 8,541,000 per year. This is something that no matter your diagnosis your body needs to survive. It is also something that as long as you are born healthy we know how to do at birth.

Yesterday marked 49 years since we lost my sister Wendy (January 2, 1971) who over her 16 days of life amassed less than 400,000 breaths with very few of them being easy.

Wendy has played much more of a role in my life than the older sister that I never met. Her existence while obviously short reminds me never to take a single breath for granted. Even when I am or was struggling with taking a breath, Wendy is a constant reminder that no matter the quality of breath it is always a blessing. That mentality has made my overall time on this earth fulfilling to say the least. It has also motivated me to have a greater impact in the CF community and aspire to do more to fight for a cure for cystic fibrosis. Approaching each day gratefully and being intentional with my actions.

In her memory, I ask that each of you take that approach in 2020 and beyond because if you’re lucky enough to get through your day with 23,400 breaths regardless if they’re easy or difficult, you’ve lived a very blessed day.

Live your dreams and love your life.

Andy

Want to make an impact now? Consider donating to the CF Warrior Project today.

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Day 40 of Trikafta

Day 40 of Trikafta:

I have reduced the enzymes that I take and have done so the last 4 days. Obviously don’t try this at home without a doctor’s permission. So far, no I’ll-effects. People with CF often need enzymes to digest fats. I’ve been taking enzymes since I was very young when my mom mixed the granules in apple sauce.

In other news, I started antibiotics a few days ago due to a bad cough which is not nearly as bad as it normally would be. It’s the new normal for me. I could tell I was congested though and Ethan had a bad cough so I wanted to be proactive.

Finally, one side effect of the medicine I’m having is lack of sleep. I usually nap an hour a day, fall asleep by 11:30 at night and wake up by six. Now I don’t fall sleep until after 1 AM and wake up at 4 AM and then fall asleep at 5 AM and wake up at 7 AM. On the bright side, I’ve caught up on infomercials.

All is good overall. Less coughing means more energy and that means life is great.

Happy New Year everyone.

Andy

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A Year to Remember- 2019

Thanks to the support of so many of you, 2019 was quite a year for CF, The CF Warrior Project, and the Wish for Wendy Foundation. Great news reported on a breakthrough CF drug, Trikafta, FDA approved October 27. This drug should benefit 90% of the CF community, but we are still advocating for the other 10%. Our blog is reaching a great deal of the CF community and its purpose remains being real, but also positive about what it means to live with CF. Real about the struggles, but hopeful for each new milestone and drug that is providing better treatment, and one day leading to a cure.

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Wish for Wendy eclipsed $4.5 million gross in its 20th year! We continue to evaluate ways to make our foundation bigger and better.

In 2019, the CF Warrior Project made its way on The Today Show (October 21) and to Pasadena, CA, where I was able to climb the steps, finishing tied for first thanks to a gentleman who waited for me to catch up so we could cross the finish line together. As Apollo said in the first “Rocky” movie, “Ain’t gonna be no rematch.” LOL! I also was a part of the 2019 Atlanta Jewish Book Festival and had speaking engagements around Atlanta, GA, and in Knoxville, TN, spreading the word about CF.

Where do we see the CF Warrior Project going in 2020? Well …

Speeches and trips already have been booked at Johns Hopkins and in Denver. I am looking for opportunities to speak about the CF Warrior Project and about making a difference in the fight for a cure. We will continue to build our online community for CF Warriors and share stories of hope and triumph, as well as provide insight, perspective, and support to those who need it.

Currently, the search is on for finding candidates to feature in the second book. Please stay tuned for more details on how to submit your story for the next book! We are looking for people with CF, or others who may not have CF but are positive influences in the CF community. For the second CF Warrior project book, we are including both advocates and role models with fascinating stories.

As we repeatedly say, the CF Warrior Project is more than a book. It’s a movement. The project has helped spread hope and created a supportive virtual CF Warrior community for those with CF and their loved ones. The CF Warrior Project has provided a space to connect with others and be inspired by stories of hope and triumph.

Please reach out to us and let us know what you want to see in 2020 from The CF Warrior Project.

Live your dreams and love your life, and most of all—Happy New Year!

Andy

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2019 – My Year in Numbers

Peter Parker once said being Spider-Man is both a blessing and a curse and that’s what it’s like to be so regimented in regards to my CF routine.

It’s a blessing being so motivated to do things that improve my health, while at the same time it’s a curse because it’s always on my mind until I complete that last exercise and/or treatment. I did at least two therapies, worked out and did some type of aerobic activity like running every single day in 2019. This included running my 23rd consecutive Peachtree Road Race (under an hour for the very first time), running/walking the stairs at the Rose Bowl, placing second, and improving my overall running pace by nearly two minutes per mile.

Without further ado, here are my approximate 2019 numbers:

Therapy: 990 times
Therapy minutes: 46,500
Pulmozyme: 365 times
Pulmozyme minutes: 4,700
Hypertonic Saline: 990 Times
Hypertonic Saline Minutes: 39,500
Taken 14,000 pills (antibiotics, enzymes, supplements, vitamins, etc.)
Run 800 miles 
Executed 65,000 jumping jacks 
Jumped 59,000 ropes 
Did 365 workouts with bands or weights (never missed a day even for travel)

Trikafta is great and all, but it hasn’t kept me alive. Making exercise and medicine/therapy compliance a priority has, and it will continue to do so for years to come.

Live your dreams and love your life.

Andy

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My Fellow Warrior – Nana

Some people have to go see a movie or read a comic book to witness a superhero. All I have to do is drive up to Charleston, SC, and visit my Nana Rose, something I admit I don’t do nearly enough. We visited her in late December just a few weeks after her 96th birthday.

Nana lost nearly her entire family in the Holocaust about three quarters of a century ago just because they are Jewish. She lost Carl, her husband of 45 years and the father of her three daughters, to cancer nearly three decades ago. Here’s their story (my mom is Eva): http://columbiaholocausteducation.org/pdf/SurvivedWeDid.pdf

When they entered the country nearly 70 years ago, my grandparents both worked several jobs. Nana fought through poverty, a language barrier, countless surgeries and the loss of the love of her life and here she is now, nearly a centenarian.

She often tells me stories of the Holocaust but I’m listening a lot more now because I know sadly we won’t be able to have these conversations much longer and her stories remind us of how we must continue to fight against anti-Semitism.

My grandmother went from nearly being killed during the war to being the mother of three children, the grandmother of seven grandchildren, and the great-grandmother of seven great-grandchildren. I personally don’t always want to be a fighter but I feel obligated because Nana Rose is the epitome of such a warrior. 

Nana taught me that miracles only come through hard work and I try to instill that strategy in the way I fight cystic fibrosis. It was my Nana who told my mom that despite the loss of her first child to cystic fibrosis and my diagnosis with the same disease, I would be the miracle my family needed. I feel the pressure of the biggest miracle in our family declaring I would carry on that unusual family tradition.

She is my fellow warrior, my sweet grandmother, and the ultimate superhero—better than any you’d find in a comic book.

Love you Nana.

Andy

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Deep Breaths- Day 30 on Trikafta

For 16,846 days, I’ve wondered if I would die without ever having taken a deep breath. The day Trikafta was approved, Andrea happened to be passing this statue in New York City which described what we all prayed this drug would give us.

Thirty-four days later, Trikafta was in my hands and this drug has definitely delivered. It’s my 30th day on Trikafta and I’m FINALLY taking deep breaths. At first, I felt like a fish out of water, but now I realize I’m just beating CF with every deep breath!

Now my goal is continuing my advocating for the other 10% of the CF population, so they get to realize that taking a deep breath isn’t how we imagined it …

… it’s BETTER!!!

Live your dreams love your life!

Andy

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