Andy Lipman's Blog, page 4

It’s not COVID!

2020 has not been an easy year for anyone but particularly those of us with cystic fibrosis (CF). First off, we have to be very careful when we leave our homes not to contract a virus that puts us in greater jeopardy than virtually everyone else. Secondly, we have to make sure our normal symptoms are indeed caused by cystic fibrosis and not from COVID-19. I cannot tell you how many times I have had sinus issues or coughing problems over the last eight months when my first thought was that I had contracted COVID-19. And lastly, speaking of symptoms, we now have to concern ourselves with one of our primary ones when we are around others – the dreaded cough!

When I used to cough in close proximity to someone else, I could laugh it off and blame it on a cold or allergies. Now it’s not a funny matter. During this pandemic, it’s critical that people know that we are not fighting a virus that could put everyone around us in great peril. Maybe it’s time to explain that we have a disease that causes mucus to clog our lungs and it is not contagious. It’s time to explain about our cystic fibrosis.

Here is the silver lining though. What a great opportunity to bring more awareness to cystic fibrosis! Who knows if we could be introducing our disease to someone who could become the next great CF researcher or donor? I met famous comedian Lewis Black years ago and he told me he was outside of a CF event one day and asked about the event and the disease that was the center of the fundraising. Mr. Black had no connections to anyone with cystic fibrosis. When he learned about it, he soon became an advocate and now has become a huge national celebrity fundraiser for CF and has become one of the famous faces for the Cystic Fibrosis Foundation. Also in my opinion by explaining it, it takes the elephant out of the room and it can be quite therapeutic. I have found that by talking about cystic fibrosis and giving people a glimpse into my journey that I feel better and I don’t have to hold in that dreaded cough anymore.

Having cystic fibrosis does not make any of us lesser people. If anything, it shows how amazing each of us is for fighting and winning this battle. Have pride in who you are and the battle you are fighting. It’s critical that today more than ever we reveal our secret identity to people around us. We are ass-kicking cystic fibrosis warriors!

Live your dreams and love your life!

Andy

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Wish for Wendy Status for 2020

Dear Wendy’s Warriors,

Yes, that is how I’m addressing each of you. We are all warriors for staying strong during this pandemic. I have no doubt my sister, a warrior herself, would address you any differently as she would be proud of everyone for showing courage and strength during this unimaginable time.

This year has not been ideal for many of us as we have had to wage our own private and/or public battles. This pandemic has taught me so many things. It has taught me about prioritizing what is most important and speaking out and looking out for those who need support. It has taught me that sometimes we have to accept losses and move forward. Finally, it has taught me about staying the course even when obstacles are intended to prevent that from happening.

Today would have been the 21st annual Wish for Wendy. Unfortunately because of the pandemic, Wish for Wendy is officially being postponed this year but just know that does not mean I do not intend to fundraise at some point before the calendar year is over. Having this event cancelled for the first time in 20 years feels like a major loss to me and my family but we know that postponing it this year is actually a “win” for our community as it will help insure that everyone around us will continue to courageously conquer what is going on around them. Whether you are in the cystic fibrosis community or not, please take this time to prioritize your health and your family’s health and whatever else is most important to you.

I wish all of you that are dealing with crises of some sort during this pandemic some sense of peace. See you in 2021.

Live your dreams and love your life.

Sincerely,
Andy, Wendy’s Loving Brother and proud member of Wendy’s Warriors

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A Birthday Blog: 47 Years of Feeling Blessed

Growing up I never saw birthdays as anything more than an excuse to eat cake, see friends and be a pain in the butt to my parents. I didn’t see them as any sort of tremendous accomplishment then because I didn’t realize the journey that it took to get there nor was I aware of the journey that was still to come. That was a credit to my parents who tried to make my life not seem so different from every other child my age.

I was born 47 years ago today. My parents found out I had cystic fibrosis (CF) because I had meconium ileus which meant a blockage in my intestines. I was soon taken away to have surgery to remove the blockage and so began my cystic fibrosis journey. I do not think my diagnosis would have been so clear that early in my life if my sister Wendy had not lost her life to the same disease more than two years earlier. Knowing that early medical attention can add years to a person’s life with cystic fibrosis, I will always feel a special bond with my sister.

My main CF symptoms growing up were a wicked cough, skinny arms and legs due to malnutrition and a problematic self-esteem which only elevated when I read about a short life expectancy for those with cystic fibrosis when I was just seven years old. I saw myself as weak and different despite my parents’ best attempts to prove otherwise. That feeling continued even as I reached college. I did not realize that not only was I carrying the load of having a life-threatening disease but I also had two more heavy “suitcases” called depression and anxiety.

Over the years, I have learned how to fight all three. I’d like to tell you that cystic fibrosis was the toughest to conquer because that would seem to make sense being that it’s a chronic disease but it’s depression and anxiety that have been the two most difficult to fight.

I have learned over time to look in the mirror and not see an ugly, pale kid whose life expectancy was a finite number. I have learned to see a determined CF warrior whose life expectancy is unknown so he better appreciate every moment of every day.

My daily medical accomplishments don’t seem like a big deal as I check them off every day but in totality they give me a sense of pride. Every 365 days I do approximately 35,000 minutes of chest therapy (more than 1.5 million minutes in my lifetime), take 15,000 pills (more than 700,000 in my lifetime) and 730 sinus treatments (nearly 35,000 in my lifetime).

This year I added the goal of working out with weights and running at least one mile every day for 365 days. It was a goal that I initially thought of as a fun challenge just for me but that soon changed after I started the life-changing drug Trifkafta.

The challenge quickly turned into a thank you to those who had worked so hard to research the drug, those who volunteered their time to fundraise and those who donated in order to secure its arrival.

The thank you slowly turned into a statement of resiliency after we went into quarantine in mid-March. I wanted to show people especially those with cystic fibrosis that they could accomplish all their goals despite being labeled “medically fragile” and being asked to shelter in place for nearly six months.

As I celebrate my 47th birthday, I no longer see this occasion as an excuse to eat cake, hang out with friends and be a pain to my parents. I see it as a time to hope for better days for everyone I love.

Today, I have three wishes. My first wish is for those who are not celebrating their birthdays to still celebrate their lives each and every day.

My second wish is for those who are locked in a hospital for various reasons without an advocate due to the pandemic to know that they are loved and missed and that they must continue to have hope that they will defeat whatever is ailing them.

My final wish is directed to my wife Andrea, my children Avery and Ethan, my mom, my dad, my sister Emily and the rest of my amazing support system both past and present. I want all of you to know that while I am not always good at voicing my emotions that you play a huge role in my life, I love you dearly and I wouldn’t want anyone else to share in this 47-year experience with me.

Thank you for all of the birthday wishes. Quarantine or no quarantine, I feel blessed.

Live your dreams and love your life.

Andy

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COVID by the Numbers

If I read one more post giving the mortality rate of COVID-19 and how few people die, I’ll tear what’s left of my hair out. Nearly 170,000 people have died in the U.S. alone from COVID-19. That’s a lot of people. I know a few. I also know several who have had it and been really sick. I’ve analyzed the numbers for several months and here’s what I’ve found to be true at least in the state of Georgia which is the 5th hardest hit state for positive COVID cases and one of the fast-growing states with regards to new cases.

The older you are, the more at risk you are. The rate of hospitalization and death increases drastically once you hit 60. For example, 4% of people 60 & over, 9% of people 70 & over, and 20% of people over 80 have died from COVID-19 in Georgia.

Who are the people most often getting the virus? If you said people 18-59, you would be correct!

That basically means those under 60 are the biggest spreaders of the virus because they are not dying but other people are, however, they aren’t just spreaders. The older you get the more likely you are to be hospitalized. Hospitalization rates for those with positive COVID diagnoses in Georgia are 2% of people 18-29, 5% 30-39, 8% 40-49, 12% 50-59, 20% 60-69, 28% 70-79 & 34% 80 & over.

If you’re under 60, I don’t want to hear “Well, that doesn’t affect me.” Remember the whole mask debate and what those like me have said regarding wearing masks. I’ll summarize. “It’s not about you!” While you may get COVID and have few if any symptoms, you can spread it to others who may not be as fortunate. This INDEED affects you if you love or plan to see anyone 60 and over in my opinion.

For those people 60 and over, this virus will test your patience to do the right thing. For those of us under 60, this virus will test our compassion to do the right thing.
I’m not asking you to be scared. I’m asking you to be compassionate, cautious and stop with all of these conspiracy theories that the virus is a hoax.

If you think this virus is a hoax, ask a first responder. If you think COVID-19 is not serious, ask a family who has lost a loved one to the virus. If you think this virus does not affect you because you’re under 50, tell your parents and/or grandparents.

Let’s do our best to work together to stop the spread of COVID-19.

Stay positive. Stay safe. Stay focused.
Andy

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Another Letter to Governor Kemp

Dear Governor Kemp,

It is just after midnight and I cannot sleep so I decided to write you another letter despite not hearing back from you on the previous one.

Our state is struggling to defeat COVID-19. Can you look yourself in the mirror and honestly say you’ve done all that’s right to protect our economy, our children’s opportunity to learn face-to-face safely in schools and the lives of millions of people who depend on you?

More than 8,500 new COVID-19 cases in the last 48 hours and hundreds of teachers and children are being infected with the virus in just the first week of school after having one of the largest camp outbreaks in the country. We are now one of the top 5 states with regards to COVID cases in the U.S. At this rate, we will surpass Italy for positive cases in the next 2 to 3 weeks.

Relying on the people of this great state to help stop the spread of this virus by urging them to wear masks and practice social distancing seemed like the right decision at the time but it has failed over and over. It’s long overdue for you to try something new besides extending emergency orders.

Like you, I don’t want children to learn virtually nor do I want another economic shutdown. I think the only solution left is mandating masks in our state and doing our best to enforce this new order. I don’t think COVID will magically disappear by doing this but the numbers should start to dwindle like they have in other states that have ordered similar mandates.

I don’t envy your position but I do think you have an opportunity to make a difference for millions of people who reside in the state which you were born, received your education and raised your family. You have a chance to be a lot more than just a governor. You have the chance to rewrite history and be a hero.

Please strongly consider mandating masks and protecting Georgians in the midst of this pandemic. It may not be the popular choice but it might just be the right one. Thank you sir.

Andy

Andy Lipman
#cfwarriorproject

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Battling COVID-19 & Cystic Fibrosis: A Mother’s Tale

Debra Sanchez is a 35-year old married mother of two. Debra is a fantastic athlete who started swimming competitively when she was just 10 years old and continued through high school. She played club water polo at Baylor University. While at Baylor, she was diagnosed with cystic fibrosis (CF). The diagnosis motivated her to start running. She has completed two full Ironmans (2.4mi swim, 112mi bike, 26.2mi run), 7 half Ironmans (1.2mi swim, 56mi bike, 13.1mi run), and numerous marathons and half-marathons.

She was on the CFTR modulator Kalydeco but she stopped it once she was pregnant with her second child in 2018. Her doctor wanted to keep her off of Kalydeco while she was breastfeeding, and she didn’t see any significant changes while on the drug so her doctor kept her off of it.

Here is Debra’s COVID account:

When my one-year old Luke developed a fever, we initially thought it was a reaction to his vaccines but the next day Levi, our four-year old, had a fever too and so we took Luke to get a COVID test and he was indeed positive. They said we should assume Levi was positive too and not to bring him in for testing. My husband Eddie showed symptoms the next day and took a test and was declared positive. I was the last one to develop symptoms. I knew I had it based on Luke and Eddie’s positive tests and my symptoms, but I wasn’t actually tested until I went to the ER nine days after the onset of my symptoms. As expected, the test came back positive.
Prior to contracting COVID-19 from my one-year old, I had already increased my normal CF breathing treatments, as I had been working from home since March. I figured, since I’m already home, I might as well do the extra treatments and get my lungs in the best possible shape in case I do get sick.

My COVID-19 symptoms started with fever, stabbing headaches, fatigue, body aches and coughing. About a week after the onset of my symptoms, my cough continued to get worse, to the point where my O2 (oxygen) was steadily dropping each day, and I was unable to speak without constant, painful coughing. My doctor and I both agreed I should try to fight COVID at home if possible, and I continued checking my O2, knowing that if it dropped below 90, I would go in.

Nine days after my symptoms started, I woke up with an O2 of 88 and I was struggling to breathe. I was crying for my husband to plug in my nebulizer compressor because I couldn’t get down to do it myself.

I was terrified to go into the hospital because I knew COVID patients were not allowed to do nebulized breathing treatments, and I knew I would be completely alone. At this point, I had no other choice. I hugged my sons goodbye, told them how much I loved them, and prayed I would be back to see them soon.

I waited in the ER for nine hours before a room became available. While there, they did an X-ray that showed double pneumonia, partially collapsed lungs, and a secondary infection from COVID. They started me on IV antibiotics and O2 immediately. My CF doctor and the ER staff advised I would need a negative pressure room in order to do breathing treatments, and those are ‘few and far between’ – not to mention regular rooms were all full as well. I finally got a room, and even then I wasn’t sure if I’d be allowed to do breathing treatments, which terrified me. I needed them to breathe on a good day, and especially now.

When the respiratory therapist finally brought me my breathing treatments, I cried. They put a plastic tent over me – which was hot and suffocating – but I was so thankful that I was able to do treatments. No one was allowed to enter my room for an hour after treatments.

I continued to get worse before I got better. The day before my symptoms started, I ran nine miles while pushing my son in the stroller. Now I could not walk 10 feet to the bathroom. I called a nurse to help me, made it to the toilet, but the short walk sent me into a coughing fit and I could not stop coughing or catch my breath long enough to use the restroom, so she helped me back to bed – where I sat, unable to breathe, unable to stop coughing, and still needing to use the restroom.

The next morning, doctors advised I would be getting convalescent plasma, which finally arrived at 1:00 A.M. There was a shortage of plasma at the blood bank on site, so it had to be brought in from somewhere else. I had no energy to watch TV or look at my phone most of the day. I was on Cefepime IV every 8 hours, Tobramycin IV every 24 hours, nebulized meds every 4 hours, blood thinner shots every 12 hours, vital checks every 4 hours, and in between I was lying prone as much as possible to try and help my lungs.

They did a CT scan to make sure I did not have any blood clots in my lungs. Results showed no clots, but a significant amount of inflammation/pneumonia. I have a follow up CT in 3 months to check for permanent lung damage and/or scarring. I also have a cardiologist appointment in a couple of weeks, as I’ve been having issues with tachycardia (excessive heart rate), and COVID has been linked to heart problems. I need to get my heart checked out before returning to my normal workout routine.

Being isolated in the hospital was terrible. I was there for seven days. I am used to having to advocate for myself, but it’s so difficult while struggling to speak (from coughing so much) and while I was already so fatigued.

The hospital was full of patients and short on staff because so many of their nurses were out with COVID. They were forced to bring in traveling nurses to help. Additionally, since everyone is alone, things that family members could typically help with, were now up to nurses. For example, they brought in a vest for me to use while I was asleep, but I had to call a nurse to plug it in because I couldn’t get out of bed to plug it in myself.

I keep hearing people say, “Everyone is going to get COVID eventually,” and perhaps that’s true, however; I strongly believe everyone should protect themselves as much as possible. No one knows how it will affect them, and our hospitals are especially strained right now. Additionally, we are still learning about COVID-19. The information seems to change daily, so the longer people are able to stay healthy and the more we are able to learn, the better our chances are for recovery.

Please stay safe!

Author’s note: Debra has no idea who in her family contracted the virus first and where they could have gotten it. She says that her family has always been very careful but they have had to make trips to pediatrician’s offices and places like that so they realize there is always risk even though the entire family wears masks and practices social distancing when they are out. Her health is much better than it was a few weeks ago, but nowhere near back to her normal. Her lung function is down and not back to baseline yet, but that is to be expected. Her left lung is still painful. Her CF doctor said her lungs will probably feel different for a long time. Her energy level is good, and she has started walking and even jogging. She is up to jogging half-a-mile at a time, so she has a long way to go with regards to getting her fitness back. She read studies about the benefits of CF modulators when dealing with COVID-19, so she started Kalydeco again after she was discharged from the hospital a couple weeks ago. She has also officially tested negative for COVID-19 and is back with her family. Debra is the only one still battling lasting effects from the virus. We wish her a full recovery.

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Back to School During COVID-19 for High Risk Families

When schools went virtual in March, I thought if we stayed home till the end of the school year that our family would be able to enjoy the summer like we had previous summers. Perhaps, I was a bit naïve. In hindsight, there was not much that many of our families could do to lessen new cases of COVID-19 as some Americans were still congregating mask-less in large groups spreading the virus. Now, with cases surging in July, the 2020/2021 school year could be in jeopardy, at least the face-to-face version, and our children face several more months of uneasiness.

I think the toughest thing right now especially as a member of a high-risk family is figuring out how to best support our children as they either re-enter the classrooms or go virtual during the pandemic. Everyone’s level of risk is going to be different depending on their views and their health as I discussed a while back on a blog post about Weighing the Risks of The Pandemic Dilemma.

As parents of high-risk families, we need some sort of transparency from the schools so we can make informed decisions as to what works best for our children and our families. To me, schools that are not prepared for the virtual option during a pandemic are doing a huge disservice to the teachers, students, and the families of those involved particularly those who are highly vulnerable. With the new case numbers surging in several states including Florida, Georgia, Arizona, and Texas, the concurrent (virtual learning from home) path is probably the safest one for those children in high-risk families, but there are so many other variables to think about.

I know the remote option makes it difficult for those families who have both parents or a lone parent/guardian working outside of the home. So how are these families going to stay safe while being financially stable at the same time? I know that there are major complaints from families who want their kids in school because they learn better in person and parents need to go to work. I believe if the schools give families the option to learn face-to-face or virtually, parents will be able to assess their risk and decide which method is comfortable for their respective families. In some cases, the hybrid method could be effective where a child is in the classroom somedays and at home the others. That way parents who need to work outside the home could possibly adjust their schedules to be home on the days the child will be learning remotely. There are so many decisions to make.

I asked members of the CF Warrior Project Facebook Group who are also part of high-risk families which topics are most important to them as we return to school. Here are just 10, with my thoughts on how we could try and keep everyone as safe as possible based on the research I’ve done:

Transportation – What seems to be the safest protocol for school buses is to have one child per seat and make sure that all children wear masks and that the person sitting in front of him/her and across from him/her is actually sitting one seat over. The bus driver should be required to wear a mask and needs to make sure the bus is cleaned prior to picking up the children and after dropping them off. That is a lot of extra work for bus drivers so I wonder if school districts will have difficulty finding enough drivers as school approaches. I also believe that children who are carpooling should have to wear masks in the car along with the driver and the driver should be cleaning the vehicle before pick-up and after drop-off.https://www.edweek.org/ew/issues/reopening-schools/getting-kids-to-school-tackling-covid-19-transportation-problem.html Face Coverings – Teachers, administrators as well as students two years old and older should be required to wear face coverings throughout the day as there have already been daycare and camp outbreaks in the United States. Studies have shown that children can be carriers of the COVID-19 antibodies and therefore can give the virus to their teachers, parents, and/or grandparents. Children are often asymptomatic, but this will also protect those young people who could possibly contract the virus and have harsher symptoms. https://www.usatoday.com/story/news/health/2020/07/17/coronavirus-can-kids-spread-covid-19-spreadquestions-answered/5450062002/ Social Distancing – All students need to be at least six feet from each other in the classroom and not facing each other. Cafeterias need to require six feet of space between children at the minimum while making sure no one sits across from each other and the option to eat outside should be readily available to all students. https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/prepare-safe-return.htmlSchool Guests – No one should be allowed to enter the school other than the current students and staff unless there is an emergency. https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/schools.htmlTemperature Checks – All schools should execute temperature checks on all students, teachers, and other school employees rather than simply relying on home temperature checks, which can vary in accuracy. https://www.forbes.com/sites/ninashapiro/2020/07/12/will-daily-covid-19-temperature-checks-help-get-kids-back-to-school/#9feaa694e3ffStudents Who Test Positive – The safest protocol I have found for children who test positive for the virus is for the child to be out for at least 14 days and that child must test negative at least once after those 14 days. I know that most schools do not require a negative test to return and several only require 10 days, but based on my research 14 days should be the standard and I would not feel comfortable without at least one negative test. The biggest issue of course is the length of time it takes to get a COVID-19 test in many regions around the country and then get the results. Our government needs to figure out how to speed up the process especially in areas with high-infection rates. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/end-home-isolation.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fprevent-getting-sick%2Fwhen-its-safe.htmlStudents Who Are Exposed – I believe if a child is exposed to someone with the virus that he or she must quarantine for 14 days from the last time they were in close contact with the person who had a positive COVID test and be sure to have at least one negative COVID test after those 14 days. Schools need to be clear with parents how the policy will work but once again the concern is the time it takes to get tested and receive the results. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/quarantine.html.Helping Employees – Can employers develop flex plans for those who must be at home to help their children with remote learning? Can telecommuting be implemented where employees work remotely from home? Can a compressed workweek be implemented where someone who needs to work 40 hours can work those same hours in four days instead of five so they can be present for a child who may be learning remotely on certain days? Can job-sharing be implemented? I would hope employers are incentivized to allow their employees to work at home as less people in the office means less opportunity to spread COVID-19. I would also think that job-sharing would be beneficial as one employee could cover for the other if that employee was to come into contact with the virus. https://www.usatoday.com/story/opinion/2020/07/16/covid-19-back-school-complications-employers-and-working-parents-column/5429833002/Remote Learning Options – I believe that it is critical to have the remote learning option. Those students who have the virus or were exposed to it must be able to keep up in the classroom even though it is far from the same experience as face-to-face learning. This is also to protect those families who are more vulnerable with regards to their health. The problem of course is that hundreds of schools are under-resourced, and a virtual option is nearly impossible to execute for those institutions. What happens then if there is an outbreak at school? How many children will be stuck without an education? https://www.nbcnews.com/health/kids-health/has-child-abuse-surged-under-covid-19-despite-alarming-stories-n1234713
https://www.usatoday.com/story/news/education/2020/06/29/back-to-school-reopen-online-classes/3251324001/Teachers and Other School Employees – What about the teachers? What happens if they get sick? Does the whole class have to stay home and get tested? How can we protect them better both mentally and physically? Shouldn’t all children be required to wear masks along with the teachers? What about janitors, bus drivers and other school employees? Why are these individuals so often not taken into consideration? https://www.cnn.com/2020/07/13/us/teachers-covid-19-return-school/index.html

 

The final concern that I have is how do we explain the pandemic to our children. Being someone who deals with depression and anxiety, I am always concerned about my kids’ mental health during times like these. I think the key to helping them is staying calm, being open, and offering support. Andrea and I have always been open with our kids when explaining our own medical conditions so the transition to discussing COVID-19 has been relatively smooth. We want them to develop healthy coping methods by feeling free to talk to us and ask us questions. They are aware that we cannot take risks like some families, but that does not mean we cannot talk about the things that we want to do and perhaps we can find a compromise. We also tell them that if something happens we will get through it together.

Parenting during a pandemic is something we were not prepared to face. Of course, the same could be said for our children so it is important to be patient with them. It is critical that the key decision-makers in the household are on the same page, that everyone learns to manage their stress in a healthy manner, and that the children know that they have their parents’/guardians’ full support.

As parents, we are dealing with unprecedented times, but, together, we can succeed on this difficult journey.

Stay positive. Stay focused. Stay home when you can. Let’s all have a wonderful and safe school year.

Live your dreams and love your life.
Andy

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Back to 1980: Talking To My Younger Self

I am a big fan of the movie Back to the Future. It would be cool if I created my own time machine just like Doc Brown did and installed it in my SUV as DeLorean’s are hard to come by these days. I would set my destination for 1980. There is someone I desperately need to find. Who you may ask? A seven-year-old by the name of Andy Lipman. Yes, I need to find me!

I need to find that kid who one early evening in 1980 picked up an encyclopedia to do a book report on Christopher Columbus and instead found the term “cystic fibrosis (CF).” That day I became distraught and eventually burst into tears when I read that people with CF do not normally live to the age of twenty-five. I would later write my memoir Alive at 25 to punch back at that same article that predicted my doom. It was that night I believe that I dreamt about my sister Wendy for the very first time though I didn’t realize at the time that the girl who offered to help me in my dream was in fact my sister.

Growing up, my parents refused to reveal the scariness of my disease while at the same time hiding the fact that CF was the same disease that took my sister’s life. I knew that Wendy died before I was born but I was not told the cause of her death until I was 25 years old. That is when I became motivated to help start Wish for Wendy which later became a nonprofit foundation which has raised more than $4.5 million for the Cystic Fibrosis Foundation. My mom and dad also used to do my postural drainage every morning which they referred to as my “exercise” and made me take my enzymes which they simply called “pills” so that I could digest fats.

Several kids told me they heard I was going to die from CF. My parents told me to ignore them but after reading the encyclopedia article it only confirmed to me that my classmates were the ones telling the truth. My seven-year-old self needs help and there is only one person who can help him and that’s me!

So it’s time for me to go! I jump into my car, set the year for 1980 and hit 88 miles per hour. All of a sudden I find myself at my childhood home, a white stucco, two-story house located in the heart of Doraville, Georgia. I quietly walk up the creaking stairs to my old bedroom and witness a sleeping seven-year-old with tears soaking his Superman pillow.

Andy 2020: “Andy? You up?”

Seven-year old Andy slowly opens his eyes…

Andy 1980: “Who are you?”

Andy 2020: “I’m a friend of your parents. I heard about the encyclopedia. I’m sorry you had to learn about cystic fibrosis that way. I need to tell you some things but I don’t have a lot of time. First off, you have to keep doing your CF exercise and taking your pills.”

Andy 1980: “Mommy and daddy make me do my exercise every morning and mommy carries my pills everywhere, so I don’t forget them. I hate having to remember them and people look at me funny when I take them. I hate my exercise because mommy and daddy have to hit me in the morning and sometimes at night. It hurts. They make me cough too and I have to spit junk in the toilet every time we switch positions. I hate coughing. It makes me feel so yucky. I do it so much during the day. My friends don’t cough and some of them tell me I’m going to die. I can’t even run laps in P.E. because of my cough.”

Andy 2020: “Yeah, first off never tell your teachers that your parents hit you. They may get the wrong idea. You must understand that your parents are not trying to be mean. They are trying to make it so you can breathe better. By coughing, you are getting that junk out of your lungs and it will make it easier to breathe as you get older. You also must become more responsible and stop letting your mom carry your enzymes. Pills will be your friend one day. One in particular called Trikafta will make your cough virtually disappear so practice taking them regularly now. As far as some of your ‘friends’ go, they don’t know how long you are going to live. No one does. You have to become stronger especially during P.E.”

Andy 1980: “I hate P.E. All my friends run laps. I try but it’s too hard because I cough. Mommy gives my teacher a note now, so I don’t have to run. It’s much better.”

Andy 2020: “No, Andy. It’s not much better. You need to get in shape, run and compete. It will change your life.”

Andy 1980: “Ok but do my parents have to do my exercise? Sometimes I want to just run away.”

Andy 2020: “Yes, they do. It is critical to keeping you healthy now and in the future. A machine will someday be invented called ‘The Vest’ which will allow you to do your own airway clearance so you have the opportunity to grow up and move away.”

Andy 1980: “That’s so neat. I always worry that I’ll be stuck living at home with my parents while my friends go off and do fun things.”

Andy 2020: “Andy, you can have a job, a family and live an exceptionally long time. You need to be more appreciative of your family though as they have been through a lot. Not just with you but with your sister too.”

Andy 1980: “Mommy talks about Wendy sometimes. She always says I am lucky to be alive and I know it is because my sister died. I am mad at my sister for making my mommy upset with me.”

Andy 2020: “It’s not your mom’s, dad’s or your sister’s fault that she died. Just trust me that one day you’ll see that your sister’s life while short will play a big role in yours.”

Andy 1980: “Okay, so I need to be more responsible for my CF stuff, start running more and be nicer to my parents. Is that it?”

Andy 2020: “Pretty much. Just know that you’ll be okay no matter what obstacles you face.”

Andy 1980: “I’ve got it. Thanks Mister. What’s your name by the way?”

Andy 2020: “Andy.”

Andy 1980: “Cool, like me?”

Andy 2020: “Just like you. Well, goodbye…”

Andy 1980: “Wait, Andy. Are you related to that girl I dreamt about tonight who asked to help me?”

Andy 2020: “Yes, but that’s another lesson for another day. By the way, I happened to notice that you still wear your nebulizer mask when you do your exercise.”

Andy 1980: “Yep. It’s annoying. I hate wearing it. Will I keep having to wear a mask in the future?”

Andy 2020: “Um…well…let’s just say you better get used to that mask, kid. Bye!”

I feel like growing up I needed someone other than my parents to tell me the importance of compliance and to give me hope. I know in reality that I will never find a time machine to help my seven-year-old self, but I do hope that I can give faith to other young kids with cystic fibrosis who so desperately need it. We live in a crazy world which has only been made crazier thanks to COVID-19, the virus that has put those of us with CF at an even higher risk. I want children with CF to know that I will continue to both support and advocate for them and their parents now and in the future.

Anyway, I have one more stop to make. I am setting the time machine for January of 2020. I have to tell a certain 46-year-old to stock up on masks, hand sanitizer and toilet paper. If there’s time, I will warn him about the murder hornets and Carole Baskin, too. Wish me luck.

Live your dreams and love your life.

Andy

The post Back to 1980: Talking To My Younger Self appeared first on CF Warrior Project.

Mandating Masks: A Letter to Governor Brian Kemp

Dear Governor Kemp,

I would like to have a conversation and initiate the first move. My name is Andy Lipman, I have a genetic disease called cystic fibrosis and I am an advocate for wearing masks to protect Georgia residents.

You and I met at your office last year through a friend who created Cystic Fibrosis Awareness Day for the state of Georgia. I was honored to represent the cystic fibrosis community that day as I handed you my newest book The CF Warrior Project and a shirt making you an honorary CF Warrior. I was born here, went to college here (Go Dawgs!) and started a family here. I have never lived anywhere else. While we are both proud Georgians, we differ with regards to one major issue: the mandating of masks in public places. I am frustrated with your refusal to order this mandate which would likely protect Georgians everywhere while ensuring our state’s economic vitality.

When you get into your car today, please ask yourself a few questions, Governor Kemp. Why do you put on a seatbelt? Why do you use a hands-free device to answer your phone? Why do you walk into a restaurant knowing that no one can light a cigarette?

The answer is simple. These policies protect people. If Georgians are not wearing masks in public places, they are failing to protect older people in nursing homes, young children and teachers trying to re-enter their classrooms and those of us who are high-risk. Simply put, you are failing the state of Georgia by not forcing the people of this great state to wear masks and you will have to live with that for the rest of your life…unless you change your stance with regards to mandating masks.

We have tried to trust the people in our state for months by urging them to wear masks but many of them have failed to take this pandemic seriously. I feel that you are equally responsible by not forcing them to do so. The refusal to wear masks is primarily why we are witnessing record-breaking numbers of new positive cases throughout the state of Georgia and other southern states while other states around the country, who have begun mandating masks, are now seeing their numbers rapidly decline. Many of us in Georgia are frustrated that you not only refuse to order a mask mandate but you are also blocking several mayors from trying to order their own including Atlanta Mayor Keisha Lance Bottoms who you are now suing so that she and the Atlanta City Council cannot enforce the mask mandate and initiate a phase one rollback. I believe this is a waste of our funds and focus not to mention making us the laughing-stock of the country during a time when we should be directing most of our attention to a deadly pandemic.

Governor Kemp, please stop seeing the low mortality rates as encouraging statistics and start seeing them as individuals dying who may not have lost their lives if we forced our residents to wear masks. You are after all a pro-life supporter. Are you telling Georgia residents that you care more about unborn lives than those who are living? Please stop concerning yourself with offending voters and think about how you can potentially help those concerned about their lives and livelihoods. Please stop fighting your mayors and follow their lead by mandating masks in the parts of Georgia that are seeing the biggest spread of COVID-19.

I do not experience any sort of pleasure from discussing the need for mask mandates but I will continue to do so until we can establish ways to stop the spread of COVID-19 both in the United States and in our home state of Georgia. I owe it to the people of this state. Don’t you?

I have said what I needed to say.

The next move is yours, Governor Kemp.

Best Wishes,
Andy Lipman

The post Mandating Masks: A Letter to Governor Brian Kemp appeared first on CF Warrior Project.

Signs of Hypocrisy

I keep hearing people say that they have rights. What about those people who you could unknowingly infect with COVID-19 by not following the CDC guidelines? Don’t they have rights? Isn’t that hypocritical?

Here are 5 signs that you may suffer from hypocrisy:

5. You applaud healthcare workers but you refuse to obey social distancing guidelines with people outside of your circle.

4. You tell people who are high risk that you support them but you don’t wear a mask in public places.

3. You tell teachers you support them but you still send your kid to school when he or she has COVID symptoms.

2. You criticize your political officials and scientists for even discussing shutting down the economy again but you host an indoor party of 10 or more people outside of your circle without people wearing masks or social distancing.

1. You claim to be a patriot but you won’t social distance or wear a mask to protect your fellow Americans.

It’s time to stop the hypocrisy and do our part to stop the spread of COVID-19.

Stay well & feel free to share.

#socialdistancing
#wearamask
#cfwarriorproject

Andy Lipman
#cfwarriorproject

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