Andy Lipman's Blog, page 5

You Know You Lived Through The COVID-19 Crisis When…

This COVID-19 pandemic is really scary. Every day we hear something that makes us want to change the channel. I’m thinking of everyone having to deal with it. Still, I believe a sense of humor will help navigate us through this difficult time. In order to keep things light and put a smile on your faces, here are 19 ways to know you lived through the COVID-19 crisis:

19. You now realize when you are having a bad day that things could always be worse like you could be stuck in prison knowing your archenemy is getting away with murder and now she owns all your pets too. #TigerKing

18. You refuse to TP anyone’s house again because you realize how much you may miss that roll of toilet paper.

17. You now want to buy the social distancing version of Where’s Waldo? because it is so much easier for your kids to find him.

16. You now watch superheroes like Batman and Robin and you are concerned less about the villains who are trying to capture them and concerned more about whether they should be wearing masks.

15. You now watch horror movies and ponder “This isn’t so bad. Where are the murder hornets?”

14. You wonder if you don’t wear a mask in a public place and someone named Karen does not record you on her phone doing so, did you really do anything wrong?

13. You are told by your significant other that you are always watching sports. Now you have a reference to use of that time when you didn’t.

12. You will never go to a teacher’s conference again and doubt those teachers who say your kid has trouble focusing.

11. You show up for a meeting wearing your pajama bottoms.

10. You know exactly where the hand sanitizer and antibacterial wipes are located in your local grocery store and you actually think wiping off your antibacterial wipes container with an antibacterial wipe is not strange at all.

9. You are hesitant to drink Corona Light beer.

8. You now yell “Foul!” at NBA games because one player got within six feet of the other without wearing a mask.

7. You were jealous of Doug Hurley and Bob Behnken not because they were astronauts but because they got to go into orbit and leave this earth during the pandemic.

6. You put in more effort while cleaning and re-heating your curbside order than the restaurant did in preparing it.

5. You will never look at Aunt Becky the same while watching Full House.

4. You will now see the “Wilson” scene in Castaway and be reminded of your own experience talking to a volleyball for several months.

3. You will look in your medicine cabinet and try to remember why you ordered all that Hydroxychloroquine.

2. You are in traffic and someone honks at you and your immediate response is “It’s not my birthday, silly!”

1. Your resumé from 2020 includes the following: homeschool teacher, workout trainer, schedule maker, mask procurement manager, Zoom specialist, drive-by birthday Uber professional, psychiatrist and finally COVID-19 social media analyst.

Listen everyone, we will get through this time. It’s so important that despite all the things we’ve lost that there’s one thing that we don’t misplace…our sense of humor. It’s critical to getting through this time. Love you all.

Live your dreams and love your life.

Best Wishes,
Andy

The post You Know You Lived Through The COVID-19 Crisis When… appeared first on CF Warrior Project.

A Fourth Like No Other

Happy July 4th!

It’s a strange Independence Day here in the U.S. as fireworks will be scarce, professional sporting events are not taking place and many of us may be proud to be Americans but not necessarily proud of all Americans. It’s as if our country has completely lost its identity.

This is a very difficult July 4th for me personally as this will be the first time in 24 years that I will not be waking up early, heading down to the Buckhead area in Atlanta and running 10 kilometers (6.2 miles) to Piedmont Park. This will be my first time not running the Peachtree Road Race since I was 23 years old when I used to run with my Uncle Bobby who got me started with running. This race to me has been my barometer measuring how I was doing against cystic fibrosis. The race will still go on this year but it has been moved till around Thanksgiving. This year was going to be even more special because I was on my first CFTR modulator Trikafta which makes it easier to breathe and therefore run. I always wanted to know what it would feel like to complete the Peachtree Road Race and not feel like I was drowning in my own mucus.

Why are we at this point where events like the Peachtree Road Race have had to be postponed and we are all losing important moments in our lives? It’s not just COVID-19 though that’s where it stems. It’s more about how we as Americans are divided on so many issues. The renaming of military bases named after Confederate soldiers and the removal of Confederate flags and statues? The fight for LGBTQIA rights? And of course the one issue which has divided us since COVID-19 began to spread: the infamous mask debate. Why is wearing a mask a big deal? Why are we more concerned about our rights rather than our responsibilities to our peers? Why has this country become so divided? If you can answer any of these questions then you’re a lot smarter than me.

When I was growing up, my family used to go out to eat a lot when we took vacations. If we weren’t familiar with the restaurant, one of my parents would walk in first and make sure the restaurant had a non-smoking section. If they didn’t, we didn’t eat there. No questions asked. I hadn’t really thought about those days until recently because I did not understand then why people would do something that would make it so that someone like me could not be around them. It seemed selfish and unfair. Didn’t they understand that I have a lung disease and if they smoked, they could make me sick? That feeling of wondering why people would not do something to make the world better for others who are high-risk has returned recently with the fight over wearing masks.

Governor Brian Kemp of my home state of Georgia recently said that he was sensitive to those who were not comfortable wearing masks. He may as well have said that he was not sensitive to those of us who are not comfortable about being around people not wearing masks and therefore being at higher risk of getting extremely sick from COVID-19. It was as if he was removing no smoking signs from restaurants for people like me.

I feel like some people side with those who have a dangerous habit rather than those who are chronically ill. And yes, I’m saying “not wearing a mask” is a dangerous habit. Like smoking, it can make you sick and it can make others sick too.

As we prepare for another July 4th, I am mourning the loss of the Peachtree Road Race. Still I can always run 6.2 miles and feel accomplished. What really concerns me is the state of our country because it is so divided. In a year when we are mulling over so many changes in our country, maybe we should start with the name of our country. How does “The Divided States of America” sound? You don’t like it? Then figure out how we can become united again. Otherwise we will lose more than just special memories in our lives.

We will lose our identity.

Live your dreams and love your life,
Andy

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One Hundred Days

I’ve always said that it is so important to make every day positive and memorable. 2020 has definitely challenged those words.

On March 1, 2020, the most difficult year of my life began to unfold. That evening my 96-year old grandmother passed away after dealing with so much pain for several months. Andrea and I had already planned a trip to Orlando for my mother-in-law’s (Andrea’s mom’s) unveiling. We had to make a stop in Jacksonville first to attend my grandmother’s funeral. While we were in Orlando, I was aware of COVID-19, but I honestly thought it would die out the same way SARS and H1N1 did. That same day we returned from our trip we sat Shiva in memory of my grandmother at my mom and dad’s house. People came over, but we could not shake hands or hug. I specifically remember Vice President Pence speaking about replacing handshakes with elbow bumps that evening. I knew if the Vice President was opposed to shaking someone’s hand, something was very wrong. This was my first indication that COVID-19 was nothing like SARS or H1N1.

The next week I tried to return to normal. The kids were still in school. I had recently booked two speeches in two high profile cystic fibrosis clinics around the country. I was even going to be speaking to the graduating class of my high school alma mater. I remember driving by my dad as he was walking on a Tuesday as he lives only about 10 houses down from us. He told me “This virus is getting bad. Be careful.” My dad worries a lot more than I do. He used to send me home when we worked together if anyone in the office came down with even a slight sniffle.

Two days later and one hundred days ago, I went to the gym. I brought my own hand sanitizer to appease my parents. I remember that my trainer Jeff seemed a little more nervous than normal and was wiping down every machine like my life depended on it. I guess technically it did and I’m grateful he was so considerate of my health. I had my best workout in a long time. Little did I know that this would be the last public establishment I would visit for at least three and a half months.

On my drive home, my mom called me and begged me to stop putting myself at risk by going to the gym until the virus settles down. I could hear the desperation in her voice and knew she had been crying. I knew that recently losing her mother was more than she could handle so I obliged. I still thought that this virus would soon be extinguished and we could go back to living our normal lives in a few weeks.

Andrea and I had two events we were prepared to attend that weekend. The more I rehashed that phone call with my mom, the more hesitant I was to go anywhere with large groups of people. I told Andrea I did not feel comfortable going. She told me that I didn’t have to worry because both events had been cancelled. The NBA postponed their season that same night. Soon everything was cancelled. This was like some science fiction movie. I was waiting for Godzilla to start destroying the city.

Soon, I learned of the first two people who had contracted COVID-19 in my state and then in my county. Then I learned of people I knew who were infected. Soon I learned of friends who lost family members due to it. I knew this was serious.

The crazy thing is that it has now been one hundred days and the numbers are higher now than when we though we hit our peak. The COVID-19 task force has not spoken in over a month. President Trump even claims that the virus is “dying out.” Many of our governors continue easing restrictions. It’s as if the people who are supposed to be our leaders are A) not leading and B) pretending like this disease never existed.

Despite everything, in these 100 days of staying home, things aren’t so bad for me. I have been jumping rope more than ever before to help my lungs. We are fortunate to have a pool and for the first time I successfully swam three consecutive lengths without taking a breath, which I would say, is pretty remarkable for someone with a lung disease like cystic fibrosis. I have since achieved this feat four times. I am working out with more weight and researching new exercises to attempt. The kids are now working out with me from time to time. My treadmill broke after nearly fifteen years so we bought a new one. In those two weeks waiting for it, I was able to conquer various steep hills in the Georgia heat and humidity which I never thought I could all while wearing an elevation mask to help my lungs work even harder. Recently a few of my friends have reached out to me and I have started the process of social distancing with them outdoors. It has been a nice change mentally. I have also slowly begun writing a new CF Warrior Project book.

As much as my life isn’t in dire straits, I still don’t plan to spend another 100 days in quarantine. It’s less about me and more about my family. It’s time we all wear masks in public places until the COVID-19 numbers plummet considerably. Please think of those of us who are at high risk along with our families. Dealing with mental health right now is a struggle for many of us. Let’s right the ship so that one hundred days from now we can talk about these ascending case numbers in the past tense.

Until then, please make every day positive and memorable.

What other choice do we have?

Live your dreams and love your life.

Andy

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The CF Warrior Project – Share Your Story or Nominate Someone for Book 2!

The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis was so well received that we have decided to create another one. For this book, I will be not only saluting warriors with cystic fibrosis who persevere and live life to the fullest every day, but also people who fight right alongside us every day. From caregivers and leaders at CF organizations to scientists and company executives, it takes a village and we have a mighty one! We would love to hear your stories or for you to nominate someone from “your village” to be in the second installment of The CF Warrior Project.

Submit Your Story or Nomination

Thank you for taking the time to read through and answer these questions as thoroughly as possible. I understand that not everyone can answer every single question, but please answer as many as you can that pertain to you. If you have already answered these questions previously, we will be in touch to let you know about any potential next steps. Thank you for taking part.

Live your dreams, love your life,

Andy Lipman

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Why Won’t You Protect Us by Wearing a Mask?

Despite the dramatic rise in COVID-19 cases this month in Arizona, Governor Doug Ducey has said that he will not require people to wear masks in public yet at the same time he is saying we need to protect those with underlying conditions. Governor Ducey, you do realize by not mandating the wearing of masks in public places, you are not protecting those with underlying conditions, right? You are essentially telling those of us who are at high-risk that our lives do not matter.

I don’t want to single out Governor Ducey or the state of Arizona because there are a lot of governors and even the President of the United States who are saying the same thing despite the fact that there are tons of articles including this one that show that wearing masks as opposed to not wearing them offers a better opportunity to extinguish the spread of COVID-19.

Let’s be clear. Wearing a mask is not the only way to help prevent the spread of COVID-19. Washing hands and social distancing are key contributors as well but the mask seems to be the bone of contention. I do understand that children under two and some people who already have chronic breathing issues may not be able to wear them. That unfortunately does not cover a majority of the people who refuse to wear them.

As a frequent mask-wearer, I want to thank those of you who are wearing masks during this pandemic especially those of you who are not considered high-risk. The following letter is not meant for you though I hope you will share it. This letter is intended for those who refuse to wear a mask when venturing into places that we could mutually attend. This letter is for those of you who think wearing a mask makes you look stupid and violates your civil rights. This letter is for someone like Governor Ducey, who doesn’t see how covering your mouth and nose could save lives in the pandemic age. Please take a few moments to read this and how your actions affect many of us with underlying conditions specifically in regards to the cystic fibrosis community.

To Whom It May Concern,

I’m not going to ask you why you won’t wear a mask to protect yourself. Wearing a mask after all is not about protecting you. I’m asking you why you won’t wear a mask to protect those of us around you who are considered high-risk.

Before this pandemic even started, those of us with underlying conditions had to be extremely careful around you. If you coughed, sneezed or complained of feeling under the weather, we covertly maneuvered out of your way so not to reveal how you personally could put our health at great risk.

I have cystic fibrosis, a genetic lung disease that means I’m at greater risk of getting gravely sick from a virus. Every day many of us have to do several nebulizers, vest treatments, take 30 to 40 enzymes, administer oral and/or IV antibiotics, puff on inhalers, snort down nasal treatments morning and night and exercise like our lives depend on it. Ok, our lives do depend on it. All we are asking from you in that same 24-hour period is that you wear a mask in a public place because…well…our lives depend on that too.

It has been a lot of work to protect ourselves over the years. Besides all the treatments we do and medications that we are on, 90 percent of us can now use a CFTR modulator which we’ve been waiting a lifetime for and it can drastically improve our lung function. The other 10 percent of us still have hope that a modulator will be found to help us too. Every day we pray for a cure.

We just can’t understand why we are doing all of this work but it doesn’t seem to matter to you because you think wearing a mask is stupid. If it was a priority to you to keep us safe, you would be wearing a mask when you walked into a public place. I don’t think you know what it’s like for someone like me to go near or even in a public place and witness you not wearing something to cover your nose and mouth. You’re not just potentially spreading a virus that could endanger our lives. You’re also spreading fear.

Please don’t tell us that not wearing a mask has to do with your civil liberties. We all have to wear clothes every day, right? We don’t see you complaining about that. Please also don’t tell us that wearing a mask makes it more difficult for you to breathe (though we do understand there are rare cases in which you really cannot breathe for one reason or another). We know it is more difficult to breathe while wearing a mask but our breathing is already compromised and we still have to wear one. If you tell us we are high-risk so just stay home, we will ask you how would you feel if someone just said to stay home for the rest of your life. You’d go insane. We are going insane. Besides, it does not solve the problem because the virus is still being spread due to the lack of masks worn. We also do not like it when you say that some people are just going to have to die from this virus. Odds are those people have underlying conditions. We in the cystic fibrosis community have underlying conditions. Are you okay with us dying so your civil liberties are not violated or you don’t have to look stupid wearing a mask? We’re not.

Please wear the mask. It’s as much a nuisance to us as it is to you and it’s an even bigger nuisance that we feel the need to beg you to wear it. I cannot promise that others won’t ridicule you. I cannot promise that someone won’t think you’re contagious. I cannot even promise that it will one hundred percent save our lives. What it does reveal is that our lives matter too and we really need to hear that right now.

Thank you for listening.

Sincerely,
Andy Lipman

Thank you for taking the time to read this. Please stay safe by social distancing, washing your hands thoroughly and of course wearing a mask in public places. Your actions not only control the spread of COVID-19. They also play a huge role in our hopes for the future.

Live your dreams and love your life.

Andy

The post Why Won’t You Protect Us by Wearing a Mask? appeared first on CF Warrior Project.

Guilt as a High-Risk Person

I have experienced some form of guilt my entire life and that feeling for the most part comes from the fact that I’m still alive and my sister is not. Wendy only lived sixteen days thanks to the disease we share. Even to this day I wonder how things would have turned out differently if she had survived. Would my parents still try to have a second child through natural birth? Would Emily have been adopted by another family? What would Wendy have done on this earth? I still feel some form of guilt for being alive while many of my peers growing up with cystic fibrosis are no longer here. I also felt a level of culpability for being a liability to so many while in college.  

“We can’t go out till Andy does his therapy.” 

“Andy forgot his pills so we have to go back.” 

“Andy is not feeling well so we can’t go out.” 

Circumstances like these led me to feeling alienated while in college and even quarantining myself in my room for days at a time so I didn’t have to be anyone else’s problem. Those were my pity party days. I eventually was able to manage that guilt and became stronger because of it. 

I think all of us at some point in our lives have felt some level of guilt for something that has happened to us. For me, most recently, my guilt has been twofold. The first is feeling like a hypocrite. I tell so many families of children with a chronic illness not to let their child live in a bubble because of their disease and here I am living in a bubble at home while the pandemic is going on. Who am I to tell people to go out and live their lives? I do however know that I am doing the right thing by being cautious and I am trying to set a good example but how can I go around when the pandemic is over and say “You have to live your life?” Am I really practicing what I preach?    

The second dose of guilt is the worst of the two. It’s the feeling of holding my family back. I’m a high-risk patient. I have cystic fibrosis (CF) meaning that I have a very serious lung disease and in Georgia, the most aggressive state when it comes to re-opening the economy, I am still being told by my governor to stay home because of my health. Being told not to take risks in Georgia is like going to Disney World but not being allowed to visit any of the amusement parks. Everyone else is going. Why can’t we? Or at least that’s how it feels to me. 

As my family has now surpassed the 12-week-mark of quarantine, I oftentimes feel suffocated by guilt. While everyone has been told to social distance, my wife and children have the added pressure that if they slip up with the wrong person/people, they could potentially put me at a much greater health risk. I used to think playing Final Jeopardy was a lot of pressure. 

Things were supposed to be easier for us. I started a CF modulator Trikafta six months ago which was brought to the market by Vertex Pharmaceuticals and my lung function ballooned 15 points. I was taking deep breaths for maybe the first time in my life. I was starting to feel like everyone else. Now, here I am back feeling like that young man in college who could not open his door because he was embarrassed about having cystic fibrosis and the effect the disease had on his relationships with his peers. 

Everyday I turn on the television and watch as hundreds of thousands of people protest around the world. Every time I open my social media pages, I see kids playing sports with their friends, families getting together to enjoy the summer and random people acting as if there was no such thing as COVID-19. It’s not that I blame them. If I did not have cystic fibrosis, we might be doing the same things. Am I jealous? I prefer the term “envious” only because it sounds a little better. Of course, I am jealous. I am not jealous because I want to do all these things. I am jealous because I want my wife and children to be able to live like this too. I do not want to have to always make decisions on what puts the least amount of risk on me. I feel terrible about it. The thing is that Andrea and the kids have been amazing. “Amazing” may not even be a strong enough word. Perhaps “unbelievable!” 

Yes, we all go through those “Woe is me?” moments. Who doesn’t? Avery and Ethan though understand that we cannot be like most families right now. Andrea has been incredible helping us to calculate our risks and educating everyone as to what works and what does not work. Still I know that right now every risk whether big or small will come down to my comfortable level and that is a lot of pressure.     

I blogged recently about having to take risks. The thing is that our risks are a lot less substantial than most and I would venture to guess that the decisions to even take the smallest risks are a lot more thought out than for most families. 

The purpose for this post is to let high-risk people and their families know that you are not alone. It’s difficult not to feel left behind right now. Just know that my family empathizes with you and that we will persevere. I knew the day would come when a majority of my friends and family would begin the slow process of returning to normal. I was just selfishly hoping that a vaccine would be available around that time so that we would not be too far behind. 

The thing is that not every person is going out right now and worrying less about social distancing. There are tons of families who feel “stuck” at home while all of this is going on and feel somewhat left behind. There are also families who are not at high risk and do not have to be stuck but they are still obeying all the CDC guidelines and even wearing masks when protesting. I want to say thank you to them. You make the lives of those of us who are high risk much easier. I support those who are protesting to make our world better but I’m even more supportive of the individual protesters who are protecting me and the entire high-risk community by wearing some form of mouth and nose covering and peacefully letting their voices be heard. 

There will eventually be a vaccine and this pandemic will someday be a part of the history books. I will go back to traveling and speaking, and my family will go back to having the same freedoms as others. I know that. The hardest part is to manage the culpability I experience while COVID-19 is still an issue and figuring out how to stay strong for those in the CF community and especially my loved ones. I want to make sure they never have to experience the sort of guilt that consumes me every waking hour. 

Stay strong everyone. We will get through these unusual times. 

And I will once again find a way to manage my guilt and turn it into something positive. 

Live your dreams and love your life.   

Best Wishes, 
Andy 

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Weighing the Risks: The Pandemic Dilemma

As of late, I feel so much pressure to do the “right” thing with regards to dealing with COVID-19. In fact, I’ve had trouble sleeping because of it. Perhaps there is no such thing as the “right” thing but rather what works best for each of us and our families. My biggest concern was once setting a good example for those in the cystic fibrosis community but I’ve learned that I can’t be concerned with how I’m perceived and just make sound decisions that work for me and my family and make sure that any risk we take does not put other people in harm’s way.

With regards to COVID-19, we each have to weigh the risks and make decisions based on those risks. I read recently about one hairstylist in Missouri who came to work with symptoms and likely infected another coworker and now over a hundred people have been exposed. I also read about a pool party in Arkansas and a graduation party in Georgia where people were exposed and contracted COVID-19. This is how the virus spreads. These are not the type of risks we plan on taking.

My family and I take more minimal risks. For example, we picked up sushi curbside the other day. You can’t heat sushi and it is the only food that we have not heated when we brought it home. Is there risk? Yes. Is it substantial? No. We did a lot of research before making that decision. We also had a friend cut our hair outside while both she and each of us wore masks. Is there a risk? Yes. Is it substantial? No. It’s up to each of us to make that decision by educating ourselves on the risks and the rewards. We have had friends over and friends of our kids. Those encounters have been outside and six to ten feet apart. Again, the risk is minimal but there is some risk. Then there are rewards. My son’s favorite food is sushi and we are helping our favorite sushi restaurant stay in business. Getting a lot of our hair chopped off has helped me and my family feel a little refreshed. And as far as seeing friends and family from a safe distance, it keeps us feeling human and helps to strengthen those relationships. It also benefits our children immensely.

My family and I are pretty strict but there are families who are stricter than us and those who are less. That’s to be expected. We have to decide what is important to us and whether we can take a few calculated risks to do them. We also have to make sure to think of others with regards to those risks. It’s a lot of pressure because I’m a huge advocate for following the CDC guidelines. Even some of our friends have told us that our decisions help them to make decisions because we are a high-risk family.
I ask people not to use us as the litmus test. Please make your decision based on what works best for you and your family and what you believe minimizes risk to you and everyone else.

Andrea has taught me not to judge others for their decisions as I have no idea what I would do in their shoes. She is right. All I can ask people is to make sure that they are doing what benefits their families and at the same time minimizes risk for others when they make their choices during the pandemic age.

We have to be very careful in this day and age not to judge our peers however we have to be even more careful when it comes to weighing our risks.

Live your dreams and love your life.

Best Wishes,

Andy

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The Georgia Model

So for the past three and a half weeks since we began opening things up in Georgia, the COVID-19 case numbers have been pretty good which has been pleasantly surprising. I don’t think this is as much because Kemp made a good decision as I still disagree with the places he opened initially but I think this gives credit to those in Georgia. People and businesses for the most part have done an excellent job regarding social distancing and keeping things clean.

I have been following several states and New York’s numbers thankfully have gone down as well. There are still states that are in an uptrend so I continue to hope that their numbers will eventually come down.

For those who want to tell me “I told you so” with regards to Georgia’s downtrend and so many of you have, I will say the same thing. I’d prefer to be wrong. Still, just because things are opening up does not mean we can go back to normal. We can’t…at least not yet. We have to continue doing what we’ve been doing and being cautious about not putting others at risk.

I am still a big advocate with regards to wearing masks. I believe it is one of the only ways we can control the spread of this virus. I keep hearing from others that it is taking away their civil liberties or it is hard to breathe or it makes them look cowardly. I understand what you mean with regards to civil liberties but please understand that it is to protect others and not punish you. As to the issue of being hard to breathe, myself and many others with cystic fibrosis wear them, and we have a lung disease. With regards to looking cowardly, I look at people wearing these and I think that those people are selfless and brave for helping those around them. I understand that not everyone is like me.

I am still staying in quarantine. I haven’t been to a public place in nearly ten weeks. I’m spending my time at home writing, hanging with my family and trying to figure out why I’m less exciting to my children than an episode of The Flash or Vampire Diaries. Ethan and I go out and play baseball or hit the tennis ball on the street. Avery and I talk about life on occasion and how she’s handling the pandemic in the teen community. Andrea and I are talking about how we can eventually open up our own house as numbers continue to dwindle but we still have to be extremely cautious.

I’m still working out every day. I was running three to five miles a day but I’ve cut that down to about two to four miles a day to protect my knees and I’m also running a lot more outside and practicing on hills. I’m still doing weights about 45 minutes a day. I continue to stay disciplined with regards to my cystic fibrosis medical routine. I do two therapies a day each for about an hour and take my 30 to 40 pills per day.

As far as my mental outlook goes, I still deal with depression and anxiety but I do my best to keep them both in check. I have days where I lie on my bed and think about the future. I don’t think that contemplating the future right now is the best coping mechanism. It’s very important that I keep things day to day and not concern myself with what could happen in a week, a month or a year. Still though, for the most part, I’m doing okay or as my grandmother Rose would say, I’m fair. I miss her a lot.

Anyway, I just wanted to say thank you to everyone who is following the rules and I hope the slow opening up of the economy has helped those who so desperately needed it. I also do want to thank those in the medical community, public office and essential business community for not missing a beat when it comes to doing their best to keep us safe. I may not always agree with what is said or done but I also know that the decisions all of these people make on a daily basis are not easy ones.

Stay safe. Stay strong. And if you can, stay home.

Live your dreams and love your life,

Andy

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Wear the Mask

I have heard all of the excuses.

“Wearing a mask makes me look scared.”

“It’s indicative of a sign of government control.”

“It looks stupid.”

You know what’s stupid? Thinking the mask is all about you. It’s not. It’s about protecting your loved ones and anyone who may come in close contact with you.

I was you at one time. I started wearing masks at my children’s pediatrician appointments, at speeches where other people with my disease were in attendance and on airplanes about a decade ago before wearing masks was “accepted.” I thought I looked stupid and fearful and that people must have thought I had a really horrible contagious disease. Adults gave me strange looks and children asked “What’s wrong with him, mommy?”

I used to explain myself to people I sat next to on airplanes. “I don’t have anything contagious. I just have cystic fibrosis, a chronic lung disease, which means any germs I catch, even a simple cold, could put me in the hospital and would be much more difficult for me to eliminate.” I don’t think it necessarily reassured my seatmate but it helped relax me.

Finally, I stopped explaining myself. I realized that I’d rather spend an hour or two wearing a mask and getting strange looks than possibly spending weeks sick at home or even in a hospital. I also realized I’d rather look like someone living in fear than exposing someone else to a sickness I could be unknowingly carrying who could then face the same horrifying consequences as me.

At one time or another we have all heard the term selflessness. It’s critical that it stop being just a term we memorized for a grammar school test and start being the way we live our lives.

Please wear the mask so others like me who are at high risk don’t have to wear a ventilator.

I promise I won’t give you a strange look or think that you’re living in fear. I’ll only be thinking one thing.

“Selfless.”

Thank you for saving lives.

Please share.
Thank you!

#WearTheMask
#ItsNotAboutYou
#SelflessnessWillSaveUs
#CFWarrior
#PleaseShare

The post Wear the Mask appeared first on CF Warrior Project.

Six Months Out of CF “Prison”

For years, I had heard a major breakthrough was seven to ten years away and every seven to ten years I would grow more frustrated that an innovative drug did not exist. The term seven to ten became like a jail sentence which led me to comparing having cystic fibrosis to serving a prison term.

In 2012, the first modulator was finally approved. It was called Kalydeco but only helped four percent of people with cystic fibrosis (CF) with specific gene mutations. In 2015, Orkambi was approved which would help 50 percent of the CF population who had two copies of the Delta F508 gene mutation. In 2018, Symdeko came out as an improvement over Orkambi as it caused less side effects and it could either work with two copies of the Delta F508 or one copy of the Delta F508 and a few other genes. Finally in October 2019, Trikafta was FDA approved for people with one copy of the Delta F508 and any other mutation with regards to the other gene. I was ecstatic as I have one copy of the Delta F508 and one copy of the W1282X which is a nonsense mutation. My doctor immediately prescribed Trikafta for me and a month later I had the drug in my hands.

It’s been six months since I began taking Trikafta. It is referred to as a triple-combination therapy, combining 3 drugs that target the defective CFTR protein. I refer to it as the miracle that has made my life much more livable.
For a person with cystic fibrosis, the chloride is not moving in and out of cells which causes thick mucus and difficulty absorbing food and lots of salt in sweat. The way these modulators work is that they help the protein function in a more normal capacity to channel chloride.

I began taking the drug in late November 2019 and after four to five days I began seeing a difference while only developing minimal side effects the first week with regards to stomach pain and an increase in coughing. One really cool thing about Trikafta which I think is less spoken about with regards to reduced symptoms is that it has helped my anxiety tremendously. I thought about it this morning while doing my therapy. I have to cough and spit out mucous every ten to fifteen minutes during my treatments and when I used to cough and spit I was worried that I would see blood or that my mucous would be dark yellow or green. Often times I would just close my eyes when I spit into the toilet because I knew the result in my head but I didn’t want to see it with my own eyes. Every now and then I would look and feel defeated when the colors were anything but white or light yellow.
Anytime my mucous changed colors meant that I needed to call my doctor and either get on an oral antibiotic or go in and get a culture and some PFT’s done. Since starting Trikafta, my mucous has almost always been clear or white. I have had less coughing spasms, too. For the first time in a long time, I also feel like I can finally take a deep breath.

Another thing I’ve noticed is that when I used to laugh that I would often cough. And when I would laugh really hard that I would often have a major coughing spasm. I would either run to the restroom or try and hold it in which never seemed to work. I used to be afraid to laugh because I knew that I wouldn’t be able to stop coughing and people would stare at me. Now I can laugh as freely as I would like. How wonderful because I love to laugh and even took a comedy class and performed on stage a few years ago. Now I can do it without the fear of coughing all over the place. It’s a good thing because in the age of COVID-19, people won’t just stare at me because I cough; they’ll be frightened of me too.

I have seen the biggest difference with Trikafta with my day to day life. I run every day and I used to cough three or four times per mile. Now I’m hardly ever coughing when I sweat. It’s amazing. My lung function (FEV1 or Forced Expiratory Value in the first second) has gone from 81 percentile (which compares my numbers against someone my age, height and weight) to 95 percentile. My doctor and I discussed it and we were even able to lower my number of vest treatments per day from three to two saving me an hour every day to spend with my wife and kids. That change has not only helped my day to day physical health but it has also played a role in my fight against depression and anxiety. Of course, I am in quarantine with a teenage girl and a preteen boy so the lessening of anxiety is not tremendous. Ha Ha!
I had my first liver test nearly three months ago and while my numbers were up a little, my doctor was not concerned. The drug does put those of us with cystic fibrosis at risk for liver failure unfortunately. I’ll continue getting tested every three to four months.

The last six months have definitely changed my life. I am grateful to Vertex Pharmaceuticals who developed the drug and all of the researchers who played a role. I also want to thank the Cystic Fibrosis Foundation for investing in companies like Vertex and for continuing their mission to treat and someday cure cystic fibrosis. The CF Foundation also realizes that Trikafta only helps those who have one copy of the Delta F508 gene and therefore only 90% of the CF population in the United States. They realize that we can’t consider this a complete success until we can treat 100% of people with cystic fibrosis and eventually that we can cure all of us with this disease.

While my “prison sentence” waiting for a breakthrough CF drug is over, I don’t see myself as a free man just yet. I don’t think that will happen until this disease is not only cured for me but for the other 70,000 people around the world with this disease. I can’t wait for that day and hopefully it will be in less than seven to ten years.

Live your dreams and love your life.

Best Wishes,
Andy

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