Andy Lipman's Blog, page 3

Cystic Fibrosis Patients STILL Fight for Higher Spot in Coronavirus Vaccine Line. Why?

Brian Kemp, do you believe in unicorns? Not the mythical horse-like creature with a horn in its head but Merriam-Webster’s other definition of a unicorn: “something unusual, rare, or unique.” These types of things do exist but adults with chronic illnesses under 65 who work are not unicorns.

I am a person who has fought chronic disease his entire life and for two decades did so while working a nine to five job away from my house. I still work as a motivational speaker and writer but I’m fortunate to be able to do this from home. There are so many of us still out there who work nine to five jobs outside of our homes and need some sort of protection that only a COVID vaccine provides us. I have a disease called cystic fibrosis and bust my butt every single day to take care of my family. I do this as an adult with a chronic illness but Governor Kemp, one thing is for sure, I am not a unicorn.

Today March 8, 2021, the following groups were added to the list of groups who can receive the COVID vaccine in Georgia: adults with intellectual and development disabilities, their caregivers, and the parents of children with complex medical conditions. The third one to me is glaring. Governor Kemp says parents of those with medical conditions need to get back to work. I agree; however, what about adults with medical conditions who need to get back to work? Do we not exist? Are we unicorns? This is asinine!

For two decades, I did two hours of airway clearance treatments and exercise so I could be in the office as close to 8:30 as I could without an excuse. I would do my treatments during lunch while many of my cohorts were enjoying a nice meal. When the day was over, I’d head home and do my final treatments. Governor Kemp doesn’t seem to believe that someone like me exists. We do…and we deserve the COVID vaccine just as much as any of these other groups.

I received my COVID vaccine but I did it because I was told there was a loophole in the system and that if I went at the end of the day without an appointment that I had a “chance” to get a vaccine though the odds were slim. It worked out but it had nothing to do with my condition. It had to do with the fact that I just happened to be at the right place at the right time. “Luck” is not something those of us with underlying conditions can afford to depend on. I still do two hours of treatments a day, take 40 to 50 pills a day, exercise for two hours a day and still tend to my roles as a husband, a parent, a speaker, a writer, a president of a nonprofit family foundation, and someone who is trying with all of his power to make a difference in the community for those with cystic fibrosis and other chronic conditions.

Governor Kemp, I am not a unicorn. There are a lots of us with chronic conditions who actually have jobs outside of our homes. We exist and we deserve to be vaccinated. You asked us to shelter in place. We did it. You asked us to be patient. We were. You ask us to continue to wait. We can’t! COVID won’t wait for us. We shouldn’t have to wait for it.

I ask you as my governor to add adults under 65 with underlying conditions to the list of people who are eligible to receive COVID vaccines. I also ask you to realize a unicorn is a mythical horse with a horn in its head rather than an adult with a chronic condition under the age of 65 who holds a job. We exist, we need to be vaccinated and we are not going anywhere.

Thank you for your time.

Sincerely,
Andy Lipman
#notaunicorn

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Doing the Right Thing: Getting the COVID Vaccine

A month ago, after my last blog, I made a call to my doctor to see if I should wait for the COVID vaccine knowing that people with underlying conditions under the age of 65 were not even included in phase 1c. Meanwhile Georgia was still having trouble getting through phase 1a.

He told me that if I could find a way to get vaccinated as soon as possible then do it. I didn’t want to cut in line when there were others who needed the vaccine, but quickly realized that I needed it just as much as anyone else thanks to cystic fibrosis.

Andrea and I decided to go to a clinic in Atlanta late in the day to see if they had extra vaccines. We initially asked the person at the front desk if there were extras and we were turned away. We asked if we could speak to a manager to find out when we could return and have a better opportunity to get a vaccine. We knew that we did not have an appointment and wanted people who did have appointments to get the vaccine because the purpose is to get as many frontline people and those over 65 vaccinated as soon as possible. We still believed that those with underlying conditions under 65 deserved to be vaccinated at the same time.

We explained that we had underlying conditions and would be willing to return if there was a better time to come. Andrea is both a cancer survivor and a multiple sclerosis warrior. Surprisingly, the manager came up to us and said, “Today is your lucky day!” They had a few extra vaccines that they did not want to go to waste. One of the fortunate things we did was that we went at the end of the day and several of their scheduled appointments did not show up.

Andrea and I received our Pfizer COVID-19 vaccines. While we were thrilled to receive the vaccine, in some ways we were sad. We were two out of maybe six people in a space of several thousand feet. People were not showing up for their appointments. People were not getting the vaccine. That means that several vaccines would be discarded instead of going to those like me and Andrea who so desperately need it.

As far as side effects, the only glaring one I had after the first vaccine was a sore shoulder, which lasted a couple of days. I was a bit more lethargic than normal, but I recovered quickly. Andrea just had the sore shoulder. We both received the Pfizer booster three weeks later. Andrea had minimal side effects (sore shoulder and a few body aches), while I on the other hand had more severe ones. I had sweats and chills, a bit of dizziness, a sore shoulder, and some severe anxiety. About 48 hours later, all scary side effects were gone and were replaced by relief. Andrea and I are now fully vaccinated and while we don’t intend to make any drastic changes, we do feel more comfortable going into places with a mask on and we definitely feel some obligation to tell others to get the vaccine if they want it.

I am writing this blog to tell others that this vaccine is a good thing and that while recently the CDC is sending states recommendations that they should immediately expand vaccine eligibility to those over 65 years old and those 64 and under who have pre-existing illness, distribution is still very far behind. I will tell you that if you want to get the vaccine and are not technically eligible currently, you could still go to a clinic and ask if there is any availability. The worst they can say is no.

The way I look at it, COVID does not wait for us. Why should we wait for it?

Live your dreams and love your life.
Andy

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How Long Will I Have to Wait?

The CDC Director has adopted the following recommendations from the ACIP (Advisory Committee on Immunization Practices) in December 2020 with regards to the order in which people should be offered the COVID vaccine:

Phase 1a: Healthcare personnel and long-term care facility residentsPhase 1b: People aged 75 years and older and non–health care frontline essential workersPhase 1c: People aged 65–74 years, people aged 16–64 years with high-risk medical conditions, and essential workers not included in Phase 1b

It is difficult for me to argue with the groups mentioned here. The question is not whether someone like me, who wants to be vaccinated and has an underlying condition, will get a COVID vaccine, but rather WHEN we will be vaccinated.

The current administration promised 20 million vaccines would be given by the end of 2020. The actual number given was closer to 4 million. To me, it does not matter whether the blame falls on our current administration or the states. The critical concern is that COVID numbers continue to spike, distribution of the COVID vaccine continues to stall, and people like me who are high risk are still playing the waiting game.

I have always been a self-advocate with regards to my health. I administer two vest therapies, three aerosol treatments and two sinus treatments every day. I take thirty enzymes, multiple supplements and vitamins and antibiotics every day, too. My daily routine includes stretching, working out and running just so I can breathe like everyone else. I do everything in my power to protect myself and that includes practicing social distancing, wearing a mask around everyone outside of my immediate family and washing my hands religiously. Still, I want to double-down on being protected and that means receiving the COVID vaccine sooner rather than later.

Back in March, the states began requiring those with serious underlying conditions to shelter in place. Among those with serious underlying conditions are those of us with chronic lung disease. When my Governor Brian Kemp signed an executive order asking people like me to shelter in place, my expectation was that when a vaccine was available that we would be on the priority list to receive it. We were after all the ones specifically identified as being high risk.

On Wednesday, December 30, 2020, Kemp announced that Georgia would expand COVID-19 vaccinations to adults ages 65 and older while already giving them to law enforcement officers, firefighters, those in assisted living facilities and first responders across the state. While all these people are deserving of receiving COVID vaccines, where are those with high-risk medical conditions between the ages of 16 and 64 who are supposed to be part of phase 1c?

Georgia is not the only state that is not yet planning to vaccinate those with underlying conditions under the age of 65. In Florida, those under 65 who are high-risk are still waiting. When will younger people with underlying conditions get COVID vaccine? | WPEC (cbs12.com). In South Carolina, a majority of the vaccines are still on ice. DHEC explains why 63% of COVID vaccines in SC are still on ice (wistv.com) In Ohio, distribution of the vaccine is behind its regional neighbors. Why is Ohio behind other states on administering COVID vaccines? (cincinnati.com)

One hundred and thirty million people in the United States (40% of the population) have some sort of chronic illness. However, even young, healthy politicians are beginning to receive the vaccine in order to show their constituents that they can trust it. Where are people in the high-risk category on the priority list? My best analogy is watching millionaires and billionaires receive stimulus checks while families just trying to keep their power on are still waiting for their payments.

I understand that I have to be patient. I feel like I have been for 10 months. My governor asked me to shelter in place and I have for almost a year. In that time, I have stopped going to the gym and instead have worked out at home. I have not dined in a restaurant and instead go the curbside or delivery route. I have watched sporting events on TV instead of going in person. I have worn a facemask around everyone I know despite having a disease that makes it difficult to breathe while wearing one. Despite doing all these things, I am still relying on receiving the COVID vaccine. It has been the light at the end of end of tunnel. But I feel like the last kid picked for teams in gym class.

This is not the first time I have had to wait for something to protect my health. I was 46 before I was able to take my first CFTR modulator Trikafta to improve my lungs tremendously. Trikafta was the fourth major CFTR modulator and arrived seven years after the initial breakthrough drug Kalydeco which did not work with my genotype.

Are we supposed to continue “sheltering in place” while everyone else gets vaccinated or do we find a way to advocate for those with underlying conditions? I will do what my parents taught me long ago and that is to be a champion for my cause. I believe that those of us with chronic disease deserve to get the vaccine as soon as possible so that we have a better opportunity to live our lives.

I will continue to wear facemasks, practice social distancing and practice good hygiene, but in the days of COVID where new more contagious strands are now being discovered, that may not be enough. I hear all the time that people get COVID and they have no idea how. They have been sheltering in place. They have been wearing masks. They have been washing their hands. It just “happened.”

Those of us with underlying health conditions like cystic fibrosis cannot afford for it to just happen. We cannot afford to further damage our mucus-clogged lungs. We cannot afford to wait to receive the COVID vaccine.

How long will we have to wait?

Live your dreams and love your life.
Andy

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Happy 50th Birthday Wendy

Dear Wendy,

Happy Birthday! You have a very special gift coming this year!

I want to tell you more about that gift but first here is what you missed over the last half century. At 2:51 P.M. on Friday December 18, 1970, you graced the world with your presence. You were born at Northside Hospital in Atlanta, Georgia to Eva and Charles Lipman. They had big dreams for you but unfortunately life had other plans. Fifteen days after your birth, your journey ended due to being born with a horrible genetic disease known as cystic fibrosis (CF). There was only one picture taken of you, you never left the hospital and there was not enough time to even give you a Hebrew name which is custom in the Jewish religion.

I too was born to Eva and Charles just 33 months later. Thanks to your diagnosis, doctors knew that there was a 25 percent chance that I would have the disease as well. When they detected that I had meconium ileus (blockage of the intestine), they knew that I too would be in a battle against the leading genetic killer in the United States.

I didn’t know anything about you growing up except that you were a few years older than me and that you died very suddenly. I didn’t ask a lot of questions, but I could sense that as the climate grew colder in Georgia that Mom became a different person. She transformed from an upbeat person to someone who was dealing with extreme sadness. What I didn’t realize was that she was dealing with grief every year around your birthday.

The best day every year for me was my birthday because Mom always made it special whether she asked my Aunt Susie to make me a Superman cake, hired magicians to dazzle me and my friends or rented horses for all of us to ride in our backyard. The only constant was getting a big hug every year and hearing how I will always be her 10-pound, 10-ounce baby boy. As I grew older, I still got that big embrace and I was still guilted into knowing how difficult it was to give birth to me because I was the largest baby at Northside Hospital when I was born.

I didn’t realize that every year she celebrated your birthday too. The celebration was quite different. She would visit your grave and bring you a stuffed animal. It wasn’t until I was 25 that I got up the nerve to ask her how you lost your life. I didn’t know that you had cystic fibrosis too. She said that the family kept it a secret from me because they didn’t want me to be scared. I now have two children of my own and have learned to appreciate the reason that they kept this information confidential.

Today would have been your 50th birthday, but you won’t be getting a stuffed animal from Mom this year. In late August, she was hospitalized and spent a considerable amount of time including my birthday in the hospital until finally being diagnosed with lymphoma.

She fought a difficult battle against cancer and lost her life on November 18th. They say the number 18 means life in the Jewish religion. How fitting that you were born on the 18th and Mom died on the 18th. I am going to miss spending birthdays with her. I am really missing those hugs.

In your memory, we started Wish for Wendy and have raised $4.5 million for the Cystic Fibrosis Foundation over the last twenty years. In Mom’s memory just over the past month, we have raised another $130,000 as we close in on our goal of $150,000. We could not do our charity tournament this year due to a pandemic and Mom’s illness, but we are still raising money for cystic fibrosis because there is no time like the present to find a cure for a disease that has taken so many people including yourself. Your memory has led to so many breakthroughs in the world of cystic fibrosis. Mom’s memory along with yours will someday lead us to a cure.

In a year in which we have incurred so much heartache in our family, I am trying to find the silver lining. Perhaps it is that for the first time in half a century that you will be spending your birthday with the most amazing person that I have ever known. I monopolized her for 47 years and I always knew that one day I would have to give her up. I just thought I had more time. I’m hoping this is the first of many in which you both can spend time together.

I just wanted to let you know that you are getting the greatest gift that one could ever ask for. Please don’t take that amazing hug for granted like I did for 47 years.

Until we meet again.

Your brother,

Andy
Live your dreams and love your life.

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Yes, I will take the COVID Vaccine

“Trust opens up new and unimagined possibilities.” – Robert C. Solomon

I have one question for each of you: “Are we ready to trust again?”

This year has been one big hodgepodge of misinformation from political to media bias. More importantly, we have seen more than a quarter of a million people die from the coronavirus with many more expected to lose their lives to this awful virus. As if we needed more mistrust amongst people in this country, now I’m reading all over social media that people are not just hesitant to get the new COVID vaccine but rather adamant that they will not get it. I think it is important that you get factual data regarding the vaccine and also I would like to explain why I intend to get the vaccine as soon as it is available to me.

First off, here are five misnomers regarding the new COVID vaccine from the Centers for Disease and Prevention (CDC):

The COVID vaccine will not give you COVID. No, the only way to get COVID is to contract it from people who have it so please continue to wear masks and practice social distancing even after you get the vaccine.The vaccine will not cause you to test positive for COVID-19.There is no proof that if you have contracted COVID-19 once that you cannot get it again so getting vaccinated would be beneficial not only to you but to those in healthcare who will not have to take care of you because your symptoms are extreme.Getting vaccinated prevents you from getting COVID-19. False, however, if you do get the virus your symptoms should be far less extreme thanks to the vaccine.Receiving an mRNA vaccine will not alter your DNA or genetics. So for those of you who wanted to turn into a zombie, probably not going to happen. 

When the pandemic started, all I asked was that a vaccine be available so that people can live their lives with less concern about getting sick and can slowly return to their normal day-to-day routines. Now there are multiple vaccination options that have been approved by the FDA which is great in my opinion. Right now, here are the companies that are producing COVID-19 vaccines: AstraZeneca, BioNTech, GlaxoSmithKline, Johnson & Johnson, Merck, Moderna, Novavax, Pfizer, and Sanofi.

While I look forward to taking the COVID-19 vaccine, I’m concerned because this vaccine has been publicly politicized and therefore there is a lot of mistrust regarding it. I know for a fact that the FDA will not approve any drug without adequate testing as people like me have waited decades for a drug like Trikafta to help our lung function. The reason why COVID-19 treatments are getting to the market sooner is because we are in the midst of a global pandemic and this vaccine will help millions of people. Not to mention a disease like cystic fibrosis is not contagious and therefore is not going to grow. COVID-19 is quite the opposite. Also, it’s not like this sort of vaccine has been completed in less than a year. Per NBC News, mRNA vaccines have been studied for more than two decades. “The recent application of this process to the COVID-19 virus is based on many years of testing. And, the safety approval process is the same for any vaccine submitted for approval.” Since this went through a Phase Three trial, that means 30,000 to 40,000 people were studied to test the efficacy of the virus compared to those who did not receive the vaccine.

My concern is that people will get the shot and mistake the side effects that the drug is not working and is giving them COVID-19. Listen, any good drug is going to have some side effects. It proves how strong it is. My Trikafta had major side effects for many of us the first week but eventually our bodies adapted, and the benefits have far outweighed the negatives with regards to this drug for a majority of people who are taking it. My other concern is the politicians will get involved which will lead the media to politicize the vaccine and cause more mistrust amongst the people of this country. The last thing we need to do is politicize something that can potentially save millions of lives.

Let me simplify things. If you get COVID-19, you might be asymptomatic. You may also have symptoms. You may also get really sick. You may also die. Are you willing to play Russian Roulette with your life? This is a chance to stop the spread of COVID-19 which will vastly improve our economy, get our kids back in school and improve both the mental and physical state of our country. It seems like a no-brainer to me.

Here is a question I’m often asked. “Will you stop wearing a mask and practicing social distancing after you receive the vaccine?” Simple answer: “No” and here’s why. I could still get the virus and be able to spread it to others. My intention by getting the vaccine is to protect myself and my family. By continuing to wear my mask and practicing social distancing, my goal is to protect you. I also want to know how long the COVID vaccine will be effective. I want to continue to do research and learn. I hope one day that I can stop wearing masks in public places but I wore masks on airplanes and hospitals before the pandemic and that will definitely not change even when COVID-19 is no longer an issue.

Anyway, I’m very excited that the COVID-19 vaccine is now available for emergency use and will soon be available to first responders, those with pre-existing conditions and eventually the general public.

“Are we ready to trust again?”

Perhaps the better question: “Do we have a choice?”

Live your dreams and love your life.

Best Wishes,
Andy

* Please consult with your doctor before deciding to get the Covid vaccine.

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It Never Hurts to Ask

In the last three months of her life, my mom proved she is one of the bravest people I know with the way that she battled cancer. My mom always displayed her courageousness but it’s in the fundraising category that I first noticed it. It all started when I was five…

In the late seventies, my mom co-chaired the Santa Claus house at Perimeter Mall in Atlanta which benefited the Cystic Fibrosis Foundation. It was somewhat ironic that a Jewish woman born in a displaced persons’ camp from two Holocaust survivors was running an event with both a Santa Claus and Mrs. Claus but my mom never worried how she was perceived. She just wanted to help those with cystic fibrosis. Her job was to drive around Atlanta and ask anyone and everyone whether they would be willing to donate toys, crafts and clothing. She claimed that all the driving actually helped her get to know her new hometown. Mom was told by a friend that recording artist Isaac Hayes ran down West Paces Ferry quite often so Mom got to work. Two weeks before the event she drove down West Paces Ferry looking for Mr. Isaac Hayes and found a gentleman in a red shirt, red short and a red bandana running near Pace Academy, a famous private school in Atlanta, escorted by two big men she presumed to be his bodyguards.

My mom pulled the car over beside the men and shouted “Mr. Hayes!” He came over to the car window and she told him about me and the cause and asked if he could donate something. My mom remembered it this way. “He was so nice and took down the information about the event, date and set up time and wrote down my name. He never really said whether he would help but I thanked him and told him how much that would mean to me and to everyone involved. I was nervous when I drove off but so proud that I made the decision to stop and at least try.”
While she came away with nothing, she obviously made an impression on Mr. Hayes. Friday morning before the event two big men in trench coats entered and asked for my mom. She walked over and one of them said “Mrs. Lipman, Mr. Hayes would like you to have these items for your Santa Claus House and hopes you raise lots of money for cystic fibrosis.” They gave her a few signed record albums of his and a framed photograph of The Cape of Good Hope in Africa which was signed by him (shown above), as well. Mr. Hayes’ hobby was photography, and the picture was one he took. Mom kept it and it still is framed in her house.

Mom said she learned a lot from her encounter with Mr. Hayes. “It goes to show that taking a chance can bring unexpected rewards and you never know how kind human beings can be. Had I decided not to stop and take the chance, I would have never gotten to meet the great man himself and would never have known if I could succeed or fail. My only thought at the time was to test myself and see if I could accomplish this and the worst that could happen is just getting a ‘No.’” Mom summed it up this way. “Never give up on yourself because you will be amazed at what you can achieve if you put your mind to it.”

The Santa Claus House raised a lot of money that year and my mom through her example taught me to never be afraid to ask when it came to a good cause. I credit her teachings with giving me the confidence to run Wish for Wendy for so many years and help us to raise $4.5 million in our twenty years of existence.

Mom never gave up on curing cystic fibrosis and neither will I. That is why I am asking you to support The Wish for Wendy Foundation (you can donate at www.cfwarriorproject.org) which benefits those with cystic fibrosis.

Our goal of $100,000 is in sight.

We hope you can help us out in memory of the courageous woman who would literally do anything to rid the world of cystic fibrosis.

Thank you to those who have already donated and thank you in advance to those of you who are considering making a donation.

And thank you to my mom for continuing to inspire me and everyone else in the quest to cure cystic fibrosis. Your courageousness never went unnoticed. Your legacy lives on through your family. We love you.

Thank you for never fearing the word “No.”

Live your dreams and love your life.
Andy

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Confidence in Oneself: The Key to Success

“Low self-confidence isn’t a life sentence. Self-confidence can be learned, practiced, and mastered–just like any other skill. Once you master it, everything in your life will change for the better.” –Barrie Davenport

Self-confidence. It is something so important especially when battling a disease like cystic fibrosis (CF). If you don’t believe in yourself, it doesn’t matter if anyone else does because you are destined to fail. I lacked self-confidence from an early age stemming from one encyclopedia article. The revelation that I was not supposed to see my twenty-fifth birthday because of cystic fibrosis (CF) was massively destructive. I was angry at my parents because I inherited CF from them. Over time I realized they both gave me something else far more meaningful which I could use to fight my disease. They instilled in me to have confidence in my abilities that regardless of any adversity around me, I could still persevere.

That mentality has paid off tremendously over the last few weeks since losing my mom to cancer. Watching her over the last three months of her life take a five-day life expectancy and turn it into more than eighty days only reinforced the fact that believing in oneself is an immeasurable tool. Not a moment goes by that I don’t think about my mom and the effect that she had on my life.

Still though, I’m hurting. I think about all the things my mom is now going to miss in mine, Andrea’s and her grandkids’ lives. I think about Ethan’s bar mitzvah, Avery getting her driver’s license and both kids someday graduating from high school and going to college.

Today, specifically though, I thought about July 4th next year and my secret to successfully running the world-renowned Peachtree Road Race each year.

Most people panic when they reach cardiac hill which is the infamous 0.7 mile stretch with a 3% incline that tests a runner’s endurance and determination from miles three to four at the annual race. What people don’t realize is that I have had a distinct advantage to running that insane mountain-like trek every year since 1997. Around the 2.5-mile mark, I could always count on finding Mom and Dad cheering me on as I embarked on the most grueling stretch of the race. We took photos there and Mom almost always made sure I took a water or Powerade with me as I left for cardiac hill. It may seem silly to some but to me it gave me a definite edge.

Next year will be my 25th consecutive race and my mom will not be there to witness it. That number is significant to me. I remember reading that article growing up that I wasn’t expected to see my 25th birthday and here I am running 25 of these 10-kilometer races with the same mucus-filled lungs.

I blamed Mom and Dad then for giving me CF when I was a child but I do not see it that way anymore. Now I would prefer to thank them both for turning me into a warrior and for giving me faith in my own abilities. I’m running my 25th road race next year because my mom and dad never gave up on me. Their confidence in me eventually translated into my own self-confidence. I want them both to know that.

There will be a hole in my heart for the rest of my life because my mom is gone but there is also a fire in my belly because she and my dad pushed me to seek greatness. I look forward to proving that next July 4th and every day before and after that because my mother and my father instilled faith in their son.

Self-confidence is a beautiful thing.

Love you, Mom and Dad.

Live your dreams and love your life.
Andy

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My CF Mom: A Superhero Among Us

It was another crisp autumn morning in Alpharetta, Georgia as the Wish for Wendy Softball Challenge was once again raising hundreds of thousands of dollars for the Cystic Fibrosis (CF) Foundation. Suddenly out of the corner of my eye I witnessed a lovely, older woman walking slowly in my direction.

“Andy,” she said. “How much do you think we’ve raised?”

This was the question she would ask me hundreds of times during the successful twenty-year history of our event. My answer was often the same.

“A lot, Mom. A lot.”

My mother’s charitable endeavors were legendary, but it is the way she cared for others that made her an absolute legend. I am only one example of someone who benefitted from being nurtured by Eva Goldberg Lipman.

When I was born on September 4, 1973, my mother’s biggest fear was burying a second child as the life expectancy for someone with cystic fibrosis was only sixteen years. Mom and Dad lost their first child Wendy less than three years earlier to the same disease.

Mom sacrificed her teaching career when I was born due to having to take care of my medical needs. Nothing was going to stop her from making sure her son would live the life that her daughter was not afforded. Everyday Mom made sure I swallowed my enzymes so that I could absorb fats, slipped a nebulizer mask on my face to inhale my meds and administered my postural drainage by cupping her hands and hitting my sides, back and chest to loosen the mucus from my lungs. I regret that I told my teachers one day that mom hit me every morning. Perhaps I could have phrased that differently. Mom had a good laugh out of it.

Mom was always present in my life. She was the PTO president at my school, the substitute librarian, the chaperone for school trips, and the team mom for both my tennis and baseball teams. She also had the unenviable task of retrieving my pills whenever I forgot to bring them to a friend’s house.

Mom was not perfect as she was a tad overprotective. She would write notes excusing me from gym class growing up, so I did not become out of breath and feel embarrassed around my classmates. She would also carry my pills in her purse for me, so I did not have to be reminded of my disease at such a young age. She hid fliers and documentaries that mentioned the shortened life expectancy for those battling cystic fibrosis. Mom also fielded my questions about why my friends did not have to do similar treatments, why they did not have to carry pills with them and the Mount Everest of all questions: “Was I going to die?” Mom did her best to protect me but that meant not being one hundred percent honest about my prognosis. In hindsight, I am glad she did not tell me everything because it is a lot for any child to absorb.

I eventually learned of my bleak prognosis when I read an encyclopedia article in grammar school. It was then that my father helped convince my mother to channel her concern into something far different – motivation!

Mom slowly began to express more positivity rather than apprehension especially at doctor’s appointments. One day, she saw me staring at a poster of a bodybuilder on a wall in the clinic and she told me that the man with muscles had CF and I could be just like him. Sure, she fibbed but her white lies helped me maintain my sanity. She also denied my doctor’s plea to send me to CF camp to “learn what it is like to have CF.” She said she did not want me to compare myself to others with the disease just because I had it but rather to live with a “sky is the limit” mentality. Thank you, Mom.

My parents did not reveal how Wendy died until my 25th birthday when I finally demanded to know what caused my sister to lose her life. This was another way for them to protect me from knowing too much about the monster of a disease that I inherited. When I learned that CF was to blame for Wendy’s demise, I told them I wanted to start a fundraiser in my sister’s honor. I told Mom she did not have to participate in the charity softball tournament as I imagined thinking about her late daughter was not something she wanted to do.

Unbeknownst to me, Mom went to the cemetery every year on Wendy’s birthday and brought her a stuffed animal. Mom was also the same person who in the late seventies helped make the Santa Claus House, an event that raised funds for the Cystic Fibrosis Foundation, extremely successful. Mom did not take “no” for an answer and even tracked down recording artist Isaac Hayes while he was jogging on a local Atlanta street one morning and convinced him to donate signed merchandise to her charity event.

Mom was excited to get back into the fundraising game and helped us to raise $4.5 million in Wendy’s memory over our 20 years. That is when I learned how both competitive and charitable my mom was because she frequently had to know how much money was being raised to benefit those with cystic fibrosis.

“A lot, Mom. A lot.”

There were three certainties at Wish for Wendy: good weather thanks to our guardian angel Wendy, great softball games and Eva Lipman serving delicious goodies to players and volunteers like they were her own children from early in the morning until the park closed around 9:00 P.M.

Mom was not only my biggest fan, but I was hers. Her actions and her story inspired me. She wanted me to take the role of underdog and run with it. Mom, in fact, was an underdog herself. She was born in a displaced person’s camp to two Holocaust survivors in Eshvega, Germany. She and my grandparents moved to this country when Mom was only three. None of them could speak a word of English yet the family persevered. Mom not only taught me how to become a warrior; she showed me too.

On November 18, 2020, Mom’s journey ended abruptly after a courageous battle with stage 4 hepatosplenic T-cell lymphoma, a rare but very aggressive form of cancer which she was diagnosed with just a couple of months earlier. Her doctor confided that when she saw the initial diagnosis that she did not think my mom would last a week. Mom instead lived ten weeks because my mom was a warrior and that is just what warriors do.

As I stood next to her grave just a day after she passed, tears racing down my cheeks, I felt the tight embrace of the breeze around me when her rabbi first mentioned her name. While I had not been able to hug her for months because of the concern of COVID-19, I recognized that embrace immediately. It was the person who had hugged me thousands of times in the direst of circumstances before telling me that things would be okay. That is what CF moms do.

I imagine that anyone who loses their mother would consider it a significant loss but for someone with a chronic disease like cystic fibrosis, it is simply unique. CF moms are absolute champions for their children. My mom was certainly no different.

Mom was a superstar in the CF community. So many people knew her and loved her which was only confirmed by the flooding of letters and donations from all over the country that we received when mom passed away. Knowing mom, she is probably wondering right now how much has been raised in her memory.

“A lot, Mom. A lot.”

Giving her final eulogy that Thursday afternoon was probably the most difficult speech I have ever had to give but knowing that my mother would not have to bury a second child was certainly the silver lining. I was happy that she witnessed the birth of Trikafta, the medicine that would help me and tens of thousands of others to breathe easier with cystic fibrosis. My mom played a big role in the approval of that drug. Her nearly five decades of hard work led to her receiving the 2020 Lifetime Achievement Award from the Georgia Chapter of the CF Foundation.

Eva Lipman paved the way for other CF moms to navigate through their own difficult journeys. She was a trailblazer, a hero and an advocate all in one. Most importantly to me, she was my mom. She made such an amazing difference in her family’s life. I will continue to demonstrate her courage and carry on her acts of kindness for as long as I live which thanks to my mom is a lot longer than anyone thought I would live.

Mom, we love you and will miss you so much.

How much you ask?

“A lot, Mom. A lot.”

Live your dreams and love your life.
Andy

– If you’d like make a donation in memory of my mom, please click donate on our foundation’s website: HOME – CF Warrior Project.

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Trikafta One Year Blog

One year ago today…

It has been 365 days since my life has been forever changed. I had just returned home from a week-long trip to Los Angeles (remember when we could travel freely) to promote The CF Warrior Project. I was very nervous about starting Trikafta, a drug that had been approved a month earlier by the FDA. I was very skeptical as I’d taken many drugs in my lifetime but none of them made the sort of difference that Trikafta was expected to make for me. This was the first breakthrough cystic fibrosis transmembrane conductance regulator (CFTR) modulator that I was able to take as I only have one copy of the Delta F508. My other mutation is a nonsense mutation called the W1282X, which is prevalent for Ashkenazi Jews.

Trikafta works this way. My chlorides all my life have not been able to come to the surface because they were blocked by my two gene mutations that screw up the salt and water content in my body. This causes the mucus to thicken in my lungs and other issues namely with my digestive system and sinuses. Trikafta allows the chlorides to come to the surface and virtually correct this. While this is not a cure, it’s certainly a difference-maker.

I took my first dose the morning of November 24, 2019 and joked that I could feel a difference immediately, but the truth was that I didn’t notice anything for about three days. It was around the third night that I noticed my cough was less of a congested cough but more of a productive cough. I could not stop coughing that night and was up until about two or three in the morning. The cough began filled with yellow and light green mucus which has been commonplace for me for years. Eventually it transformed into a clear liquid-like mucus which was quite unusual. This cough lasted for two to three days. The mucus has not turned back to yellow or green in the last year. Other side effects that I saw were severe stomachaches and diarrhea that lasted for a day. Then came the good side effects.

For the first time in my life, I was able to take deep breath after deep breath. I could run without coughing. I didn’t cough anymore when I laughed. I gained about seven pounds in the first week as I realized that I would now have to eat like a “normal” person instead of the garbage compactor I had become with cystic fibrosis as it was so difficult to absorb fats in the past. The biggest difference was seeing my pivotal pulmonary function results which went from the low 80 percent FEV1 (amount of air you can breathe out in the first second) to the low to mid 90 percent FEV1.

I have been doing blood tests every 3 to 6 months to make sure my liver function is cooperating with the drug as that is a major side effect and has forced others to take breaks from the drug. My function has gone up some but not enough to be considered dangerous.

As I sit here thinking about the past 365 days, I’m grateful to Vertex, the Cystic Fibrosis Foundation and everyone who worked so hard to get this drug to the market. I am also sad for all of those CF warriors who never were fortunate enough to benefit from this drug because they lost their lives to cystic fibrosis. I will continue to fight for those amazing fighters like Claire Wineland, Leann Ott and my own sister Wendy Lipman.

I also feel obligated to help those who cannot be on the drug either because they are too young, had a transplant, live in a country that access is not available or because their genotypes don’t allow for use of the drug. I will continue to help the CF Foundation and other CF based foundations around the world to help these people to see similar and even better results than I have had.

It has been a crazy year quarantining during a pandemic when for the first time I want to see the world from the perspective of someone who can finally breathe freely. I will do it again one day soon but until then I will do the “right” thing and mask up, practice social distancing and maintain good sanitary habits.

Stay positive everyone. Good things are still coming.

Live your dreams and love your life.

Best Wishes,
Andy

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Keeping Your Warrior Mentality During The Pandemic

COVID-19 is once again surging in the United States which means more quarantining for those of us who are at high risk. I thought this would be a good time to make a list of things to do to keep your sanity during this difficult time whether you have cystic fibrosis or any other medical condition. So without further ado, I bring you the top 10 ways to keep your “warrior mentality” during this pandemic:

10. Keep your perspective: Things could always be worse. When things seem to be falling apart, remember somewhere out there is someone who would trade places with you. Know that this difficult time is temporary and that things tend to even out. Things like COVID vaccines are on the horizon. Social distancing and wearing masks are more the norm now rather than the exception. We know a lot more about this virus than we did months ago. We are definitely in a much better position to get through this than we were when the pandemic started.

9. Try something new: Pick up a new hobby. Learn to play poker. Binge-watch some NetFlix shows. Invest in the stock market.

8. Keep a sense of humor: I have realized with cystic fibrosis that the more serious things become, the more my anxiety goes through the roof. That is why I try to answer that seriousness with humor. I think humor is undeniably the way I keep things together. Maybe it can work for you.

7. Exercise: Exercise is not only good for you physically, but it also helps you to release endorphins into your brain and therefore improve your mental state. I try to work out for 90 minutes per day including weights, jumping rope and running. Find what works for you. Maybe follow an online program or get a virtual coach.

6. Work on your Mental Health: Try meditation or confiding in others about things you are going through. If you are struggling, talk to someone whether it be a psychologist, a psychiatrist or just a member of your support system who you trust. Maybe you can get together with friends while practicing social distancing in your driveway.

5. Take a break from the news: I know we have a lot going on between COVID, politics and the craziness of 2020 but it’s critical that we don’t let the media consume us. Take breaks from the constant negativity. Go for walks. Read magazines. Play games. Talk to your family.

4. Take a break from social media: We have all seen those posts that make us want to tear our hair out. Sometimes just like the news, it’s good to just walk away and find things that make you happy. Keep in mind that social media is what people want you to hear and not necessarily what is actually going on.

3. Don’t judge: Try not to judge those who are weighing their risks differently as long as they are not putting others at risk. Everyone has their own level of risk tolerance.

2. Stay compliant with regards to your meds: Keep doing all of your treatments and/or taking your pills. Make sure you are talking to your doctors whether it’s a regular visit, a telemedicine visit or even just a phone call, text or e-mail. You are here for a reason. Keep taking care of yourself.

1. Weigh your risks and be willing to compromise with caution: There may be things you can do that are a tad higher than low-risk but if you are okay with the risk and you are not affecting anyone else then that may just work for you. Involve your family in the discussion so that everyone feels that they played a role in the decisions made. All I ask is that you please continue to wear a mask and social distance. It is making a difference.

Times are tough right now but I promise you that if each of us continues to wear masks, practice social distancing and repeatedly wash our hands when we make contact to foreign or unclean surfaces that someday soon this pandemic will be behind us.

Live your dreams and love your life,
Andy

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