Andy Lipman's Blog, page 11

Starting Trikafta – A Life-Changing Pill

A few minutes ago, I started what I hope to be a new beginning. I started Trikafta, the first CFTR protein modulator that I have been able to take. It’s hard to explain my feelings when I swallowed that first pill, but I will do my best. 

I take 40 pills a day, 280 a week and nearly 15,000 a year yet this pill is more significant than any of them. I am very nervous because I know the first few days will be rough as this is called “The Purge.” My mucus will likely thin and I’ll deal with some side effects so if you see me and I look like death just know that it’s part of how this works. I liken it to going to Houston and watching my Falcons blow a 28-3 lead in the Super Bowl. I didn’t look very well after that either. I’m not sure I ever recovered to be honest but I digress. 

I know that the potential life-changing results far outweigh the risk of side effects so I’m now more excited than nervous regarding taking Trikafta. To understand how Trikafta works, I’ll try to explain in layman’s terms. My chlorides all my life have not been able to come to the surface because they were blocked because I have 2 gene mutations (Delta F508 and a nonsense or stop mutation called the W1282X) that screw up the salt and water content in my body and therefore has been causing mucus to thicken in my lungs as well as other issues with my digestive system and sinuses. This new drug will allow the chlorides to come to the surface and virtually correct this. This is by no means a cure but it would drastically help. 

As I sit here at my kitchen table, I think of my sister Wendy, people like Claire Wineland, Leann Ott and those who would have loved the opportunity to take this drug. I’ve lost a lot of peers over the years, probably more than most people lose over their first five decades of life, likely more than most people experience over a lifetime. I dedicate this first pill to them. Thank you for paving the way for so many of us. All of you will always be CF Warriors. This disease never beat any of you nor did it dampen your spirits. I also want to thank everyone who has donated to Wish for Wendy over the last two decades. Thank you for making a difference for me and the tens of thousands of others. A lot of philanthropies can’t necessarily prove that your money is going somewhere. This morning that’s exactly what I did. Finally, I want to thank the CF Foundation, Vertex Pharmaceuticals and the research teams over the years for helping to discover this game-changer. I will never be able to thank any of you enough. 

Most of my peers who have started this drug have seen immediate results either with their lungs, their digestive systems or their sinuses and in some cases all three. I hope to as well but I won’t put added pressure on myself. All my life, I’ve taken pills in order to avoid getting worse. I never thought I could just take a pill and get better. That all changed on October 21st when I learned of the drug’s FDA approval.

Finally, I want the 10% of people whether under 12 or with a different genotype or in a country with limited drug access or just not able to benefit from this drug because of some procedure to know that this in no way means that we have forgotten about you. I have been in your shoes when I was not able to try the other protein modulators: Kalydeco, Orkambi or Symdeko. We must continue to raise funds and awareness so that EVERYONE gets a breakthrough drug and so that one day each of us can find the one thing that we all so desperately want: A CURE!

Let the Trikafta experience begin. I hope that not only will this drug help me but that my liver and the rest of my body will be able to sustain their strength so that I will be able to stay on this drug for a lifetime because I have so many things I still have yet to accomplish and so badly want to.

Let’s go!

Live your dreams and love your life.

Andy

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Dear Cystic Fibrosis – My open letter to CF

Dear cystic fibrosis,

Forty-six plus years ago, you entered my life. I never knew life without you and it’s likely I never will. You have given me chronic lung, digestive and sinus issues. You’ve made it so having children was a near possibility and even reaching the age to have children was pretty slim. You’ve contributed to my anxiety and my depression. You’ve done so many awful things to me BUT you’ve done one thing for me that cancels out everything else.

You’ve given me a reason to be a fighter…and a damned good one too.

I mean I have other reasons. I have my parents, my sister, my beautiful children and wife, my friends and the rest of my family but YOU need to know that you are predominantly the reason why I’m still here. Yes, that’s right. The reason I shouldn’t be here is actually the reason I am.

I don’t know if I hate you or respect you. You’re strong. You’re persistent. You’re tenacious. All the things I want to be. That I need to be. That I absolutely have to be. You’re the reason I wake up early in the morning and go to bed late at night. You’re the reason I truly appreciate each day I spend on this earth. You’re the reason I’ve found my platform. My legacy.

A month ago a drug was approved by the FDA to improve my chances of defeating you. The truth is that I learned a long time ago that defeating you has little to do with anything physical. People have died because of you BUT they have lived because of you too. And that’s me. I live every day to the fullest because you are in my life. While I look forward to improving some of the physical symptoms of having you in my life, I will not relinquish the mental stronghold I have over you regardless of any breakthrough or cure.

So, in short, remember one thing:

I’m not dying because I have cystic fibrosis but rather I’m living because I have cystic fibrosis.

Thank you for making me a fighter.

Live your dreams and love your life.

Andy

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Life-Changing moment- My Trikafta Approval

Sitting at home yesterday, the phone rang and I recognized the number. In that moment, I knew I had lived up to the words of advice my father gave me, twenty-plus years ago. Because of this, my Trikafta approval was in my grasp.

Let me go back to the winter of 1995. Atlanta was about six months away from hosting the Olympics. The Braves had just won their first of many world championships — or so I thought. My dad and I flew up to visit Thomas Boat, MD, at the University of Cincinnati, who was my physician for nearly a decade since his days at the University of North Carolina. Dr. Boat had seen me through my difficult college years when my lung function decreased drastically because of the way I took care of myself. Or perhaps it’s more accurate to say the way I wasn’t taking care of myself. Dr. Boat always spoke the truth and I had more faith in him than I had in any other doctor at the time, and probably any other doctor I will ever have.

I’d “cleaned up my game” since those trials in college and was a pretty good patient, though years of skipping classes and treatments had delayed my college graduation. I ended up graduating in 1996 instead of 1995 with a majority of my class. Yeah, I still missed a therapy here and there, and worked out most days during the week. I ran on occasion but had never run a long distance. I had a good appointment report that day in 1995. My lung function was back around 100%. It had slipped more than 20% during my depression in college but was slowly climbing back up. It’s not the appointment that was a vivid memory, though. It was something the other two people in that room said that morning. 

Dr. Boat said, “Everything looks good … for now.” It wasn’t the first three words that caught my attention. It was the last two. “For now?” What did he mean by that? My anxiety took off. Am I going to start feeling like Jell-O tomorrow? Are all people in their early twenties great and then the decline is like falling off Mt. Everest? 

My dad, who accompanied me to every appointment in my late teens and early twenties, was not a man of many words. He and I probably wrapped up most conversations with one word responses or even just simple nods. But that day was different. He responded to Dr. Boat’s analysis by saying: 

“That’s why you have to take care of yourself, Andy. You have to be ready so that when something big comes down the pipeline, you’re ready.”

After giving his advice to me, my dad asked the doctor his routine question, “Any advances in CF research?” Dr. Boat responded with his usual answer, “We’re hopeful. Maybe 7 to 10 years we could have something.” 

Seven to ten years felt more like a prison sentence to me and sad to say, it turned out to be much longer than that. But my dad’s words made me realize I had to step up my game. I didn’t want a cure or much less a major breakthrough to become available and I was either gone, or had let health go to the point it would do nothing for me. It was then that workouts went from 3 to 4 times a week to nearly every day, then eventually to every day. Short runs once a week slowly became 3 to 4 times a week to nearly every day, then every day and finally to running the Peachtree Road Race 10 kilometer event every year for 23 years and counting. 

Skipping therapies here and there stopped completely. I haven’t missed one since.

Fast forward to yesterday late afternoon. I saw the phone number, knowing immediately who it was, and was pretty certain I knew what it meant. I’d lived up to the deal quietly made between my father and myself that day. 

It was my rep at Vertex. “Andy, do you have a few minutes?” I put her on hold. Tears began flowing down my cheeks before I reconnected and said, “I’m good now.”

She continued, “Andy, you’ve been approved for Trikafta. Congratulations. Are you excited? Nervous?” 

I told her that I’d been waiting a lifetime for this drug. Three other breakthrough drugs had been approved by the FDA over the last seven years, but none of them fit my genotype. I had to keep “being ready when something big came down the pipeline.” 

Twenty-two days earlier, ironically the same day I’d been on The Today Show promoting CF awareness, the drug Trikafta was approved. It was only a matter of time that I would hear whether I was approved to take it or not. Though I grew frustrated for the next few weeks as social media blew up with posts revealing patients getting Trikafta from here to California, I knew insurance would eventually fold and I would get my “something big” drug.

The pharmacy still has to discuss it with the insurance company and complete some paperwork, but it looks like I’ll be receiving Trikafta late next week and be starting it soon after. I know I will probably exceed my deductible rather quickly and have to pay out of pocket a little more than previously, and there will likely be side effects. Getting used to the drug may take time and there’s always risk of the drug affecting my liver to a point where I can’t take it, or we adjust it, but that’s honestly not the point. 

The point is I had a deal with my father, or better yet myself, and stayed true to my word.

And now I have the opportunity of living longer and spending more time with my children so I can make deals with them, too.

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Thanks, Dad.

Read more on my Trikafta Approval journey here: http://www.cfwarriorproject.org/trikafta/

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Trikafta- Preparing for a life-changing​ drug!

Most of you have heard by now that Trikafta has gained FDA approval and will soon become avalible to CF paitents in the US.

It’s been a crazy few weeks, between an appearance on “The Today Show,” the announcemnt of FDA approval for Trikafta and the Wish for Wendy event. To say I’m emotionally and physically spent is an understatement. Yesterday, I was diagnosed with a hip flexor strain which is why it hurts to run and twist. I guess I’m getting old, but getting old is still something I’m pretty proud of — never thought I’d have “old” person problems!

Today was a long day, too. I spoke with Vertex (the company that makes the new breakthrough CF drug Trikafta). I worked on a lot of the paperwork and learned a lot more about the new drug. I decided to get my blood work done as that’s a perquisite for the doctor giving me the prescription as one of the bigger potential side effects is liver issues, so if my numbers are down, it would not be wise to start it.

Having blood work done is something that really affects my anxiety level because I have no control over the results. After fasting from 11p.m. 10:50 the next morning, I had 11 vials of my blood taken. The doctor did a glucose test, too, to see if I had CF-related diabetes as well, which required drinking a substance that tastes like a flat Sunkist. It’s horrible! If you have ever had a baby it is the same orange drink pregnant women complain about! Anyway, after that, I had to keep fasting another two hours before I had one more vial of blood taken to see how my body reacted. However, all the anxiety will be worth it when I can start taking Trikafta.

The great news is I got a text from my doctor saying all of my numbers looked good enough to start Trikafta. Another good thing, I don’t have CF-related diabetes either.

The drug Trikafta won’t be in my hands for several weeks, but I wanted you to know I’m doing everything in my power to prepare for this potential life-changing moment. Thanks, everyone for your continued support.

Live your dreams and love your life.

Andy

Incase you missed my segment on the 3rd Hour of Today, here it is!

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How to Tell People You Have Cystic Fibrosis

When I was little, I didn’t know how to talk about my cystic fibrosis. To be honest, I didn’t even know what CF was. I didn’t know why I took pills or why my parents hit me all the time (postural drainage therapy– relax folks). I just thought I had a bad cold that I could not shake. 

Over the years, I’ve come up with some tips on how to tell people about your CF.

5 Tips on How to Tell People You Have Cystic Fibrosis (CF)

1.     Be ready to educated. Make sure you know enough about CF to contribute to a conversation. Not just what it is but why you need to take so many medicines and do so many treatments daily. This is likely the first time they have ever heard of cystic fibrosis. You can also use this time to ensure them that cystic fibrosis is not contagious. 

2.     Be positive. Don’t say “I have a disease that will probably kill me.” Kind of turns the room into a quiet place. Say, ”I have a genetic disease that affects my breathing, digestion, etc. I live my life to the fullest and have found a way to make a difference. Then you can talk more about you can take 10 pills at the same time. Beat that!” In other words, be positive and keep a GOOD sense of humor. It lightens up the room.

3.     I don’t usually reveal my CF the first time I meet someone unless they already know about it. As I’ve gotten older, people have known as I have a decent presence on social media and local media. I recommend waiting for a good opportunity for a segue. For example, “Please pass the ketchup. Oh, I have cystic fibrosis,” doesn’t work. However maybe you see someone coughing a lot next to you. You can then explain to the person you are with, why you need to move because you can’t afford to get sick because of your chronic lung disease. If the person is interested in learning more, they will ask.

4.     Don’t have regrets. If you bring it up and people don’t want to hang out with you because of it, don’t take it the wrong way. CF is part of who we are whether we like it or not. Because of this disease, not everyone is going to want to be our friends. HOWEVER, you will meet a special group of people who will and you should treasure them. At the same time, don’t settle for relationships or friendships. People are lucky to have you in their lives with or without CF.

5.     Tell a person if they google CF that it looks a lot scarier than it really is. Explain all the progress being made. Tell them how you’re feeling and your expectations. It’s a lot better to be open than holding the secret for a long time, and having them find out on their own.

6. Make sure you are ready! It is okay to wait, if you don’t want to tell someone about your CF then don’t. It is your health and your business so make sure you are comfortable with who you tell and when.

7. Help them understand how cystic fibrosis impacts your life. Always running late because of theray, having to miss out on a fun event because your in the hospital getting IV Antibiotics. Help them understand how CF impacts your everyday life.

 Live your dreams and love your life!

 Andy

Consider making a donation to the CF Warrior Project today!

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5 Keys To success – Staying Fit with CF

Working out has impacted my life greatly and I’m not just referring to my appearance. Getting fit has provided me confidence. It’s a confidence I lacked my first few years of college. Working out and staying healthy allowed me to see that I can have some sort of control over cystic fibrosis.

My pulmonary function numbers have increased since I started including working out and running into my daily routine. Here are some tips as to how you can make fitness a part of your everyday CF routine and improve you mind and body!

5 keys to success with staying physically fit when you have cystic fibrosis:

1.       Make your workout part of your treatment. I don’t mean doing your workout during your treatments. I mean waking up earlier and giving yourself time to do your workout pre-treatments or post-treatments. In other words, if you do your therapy, you do your treatments. It all goes together. Missing a workout should have as much value as missing a treatment.

2.       Take pictures of yourself to reveal the progress you’re making. You don’t have to post them unless you want to but it’s always fulfilling to see how far you’ve come and it allows you to have goals and eventually make new ones.

3.       Take pride in being a CF fitness warrior. In other words, when people notice your new physique, be proud of how hard you’ve worked and know that your journey has not been easy but totally worthwhile.

4.       If you can, buy bands and a jump rope to travel with. When you travel, carrying workout bands allows you to get a good physical workout and the jump rope will keep you in good cardio shape. I recommend using apps like MapMyRun to also show you far you’ve walked, run or biked wherever you go. Sometimes getting away from the treadmill is a lot more fun because you can take a new adventure each time.

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5.     Don’t do the same workout every day. That gets stale. Read up on new workouts. If you can afford to hire a trainer, go for it. Do workouts before your therapy sometimes and sometimes after. The trick is not getting into a rut.

*NOTE* Please discuss with your doctor before starting a new exercise regiment.

Wondering how diet comes into play? Read all about my CF Diet Here

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The Wish For Wendy Foundation – Looking To The Future

Wish For Wendy Foundation looking to the future and for a cure for cystic fibrosis.

Nearly three years before I was born, my mom gave birth to a little girl named Wendy Carol Lipman. My mom and dad had hopes and dreams for Wendy that most parents had for their firstborn. 

Unfortunately, what they didn’t know was my sister would never come home from the hospital. A loss that is unimaginable for most parents and unfortunately a reality for many. 

I knew I had an older sister growing up but I had no idea that she lost her life to cystic fibrosis. The reason behind her death became the family secret over time. Every year my mom would visit her grave here in Atlanta on her birthday to celebrate her life and mourn the loss of her child. 

At the age of 25 I finally mustered up the courage to ask my mom, why/how did my sister die? My mom finally revealed to me what everyone with the last name of Lipman already knew; Wendy died from cystic fibrosis after only 16 days of living on this earth.

Living with CF and knowing the Truth about Wendy:

From there on out it became my passion and mission to make a difference in the world in memory of my sister. Since I am a passionate sports enthusiast I wanted to combine my passions to make a difference. That is why my friends and I started the Wish for Wendy Softball Challenge. With the support and hard work of my family and friends, the event turned into so much more. This year will be the 20th anniversary of the tournament and we will have raised well over 4 million dollars for the CF Foundation here in Georgia.

We are also taking Wish for Wendy to new heights, using the foundation as more than a one day fundraising event and dedicating ourselves to raise hope through the CF Warrior Project and raise funds to find a cure for CF. The Wish for Wendy Foundation is so much more than just a softball tournament now! 

The only picture my family ever took of my sister sits as my screensaver years later to remind me of why I must give back, raise hope and find a cure! We are still brainstorming of how we can make a difference in memory of the girl who only got 16 days of life. It’s my hope that we give her a legacy.

Let’s all be in this together! Help us find a cure for cystic fibrosis.

Consider making a donation to the Wish for Wendy Foundation via the CF Warrior Project today! A portion of the CF Warrior Project book sales will also benefit the foundation who will then distribute the money to other well-deserving CF charities around the world.

Live your dreams and love your life.

Andy

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3 Tips for Traveling with Cystic Fibrosis

Three Tips for Traveling With Your CF Treatment Equipment

When you have cystic fibrosis, traveling requires a little advance planning due to the number of daily medications and procedures required for daily treatment. Here are some tips that might help make your packing a little easier, more efficient, and more complete so you don’t forget anything or have run into problems while traveling.

Don’t pack at the last minute. I can’t reiterate this enough. Give yourself time. Make a spreadsheet of everything you’ll need. Always bring a few extra days of meds due to flight cancellations; in the event you accidentally drop and lose meds somewhere; or just in case you realize you are staying longer than originally planned.Always bring a note from your doctor explaining why you need to have these meds with you at all times. Security teams at airports don’t always recognize medical devices. Bringing along the instructional booklets that come with your device is helpful, as well. Also, politely ask security to put on a new pair of clean gloves when going through your stuff, so they don’t inadvertently pass on unwanted bacteria and germs. This is important.Make sure your equipment has been tested before you bring it and do not check your medical bags. The last thing you need is for them to get lost or delayed! If asked to gate check, explain the medical importance of having them with you onboard.

I use four different nebulizers each day. Three of them have hypertonic saline and one has Pulmozyme (dornase alfa). Nebulizers convert medication into a mist, enabling it to be inhaled directly into the lungs. This is a lot more common for cystic fibrosis, asthma and COPD patients. 

Pulmozyme is a synthetic protein used for breaking down excess DNA in the pulmonary secretions of people with cystic fibrosis. It helps improve lung function in people with cystic fibrosis by thinning pulmonary secretions and reducing the risk of respiratory tract infections. I have been taking it for several decades. Unfortunately there are side effects like eye irritation and laryngitis, but it’s worth the risk in my opinion. 

Hypertonic saline helps thin mucus and I’ve been taking it for about a decade. Side effects include sore throat and throat dryness, but I’ve found it to be very helpful. The drug was discovered because surfers with CF in Australia were having less lung exacerbations. 

Perhaps I should have been a surfer although I’m stuck in a landlocked city and my balance is pretty pathetic. 

So that’s about it. Have fun and safe travels. Read more about travel with CF here.

Andy

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Mental Health Awareness​

Mental Health Awareness in 2019

Imagine being trapped in a well and the higher you climb, the further away you get from your escape. In other words, there is no way out. You just received a brief glimpse of what it’s like battling depression. 

I’m not only an advocate; I’m also a mental health sufferer. After being diagnosed with clinical depression as well as anxiety, I spent time as an outpatient years ago at Ridgeview Mental Health Institution in Atlanta. In my opinion mental illnesses are just as hard to fight as chronic physical conditions. 

It was recently Mental Health Awareness Day and lots of people were posting on social media. I want everyone to know that depression, anxiety and other mental health disorders are not just colds that come and go. They are constantly with us. Sometimes they hide but trust me, they are still ready to pounce and nothing anyone else can say including, “Calm down,” “Cheer up,” or “You have to fight this,” will help.

Admitting you battle personal demons or combat addictions does not make you weak. In fact, it demonstrates how truly strong you are. That is why I go to a psychologist and psychiatrist and freely talk about mental health awareness.

Here are some stats from the Substance Abuse and Mental Health Services Administration (SAMHSA), Centers for Disease Control and Prevention (CDC), and the U.S. Department of Justice.

1 in 5 U.S. adults experience mental illness each year
1 in 25 U.S. adults experience serious mental illness each year
1 in 6 U.S. youth aged 6-17 experience a mental health disorder each year
Suicide is the 2nd leading cause of death among people ages 10-34 

If you have a problem, the first step is admitting it and getting help. Get help before it gets worse. Don’t just do it for you. Do it for your friends and family. You can learn about your triggers and strategies for controlling and battling them.

You only live once … make sure you do it with a healthy body AND a healthy mind. 

Live your dreams and love your life.

Andy

Read more about my experience with mental health here.

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How Many Pills Do You Take? – A day of pills as a CF patient.

You may have heard a CF patient or two talk about pills. Pills, Pills, Pills am I right?? So what kind of pills might a typical CF patient take? Before I get into my typical pill routine, I want to point out that everyone with cystic fibrosis is different and so are their pills and circumstances. Some people have lung and pancreas issues, while some have just one or the other. Lots of us have sinus issues and some have CF-related diabetes. 

I can only write and share from my experience and perspective of course and I think it goes without saying, I am not a medical doctor.

Every single day I personally take 40 to 50 enzymes called Zenpep. I take 3 to 4 per meal depending on fat content. I need these pills/enzymes to digest fats. I also take 2 vitamins called DEKA which helps me absorb vitamins that need fats to be absorbed – D, E, K and A (hence the name DEKA). These fat-soluble vitamins are critical to normal growth and good nutrition.

I inhale Pulmozyme once a day and hypertonic saline three times a day along with my vest therapy for my lungs. Hypertonic saline was discovered when surfers with cystic fibrosis in Australia were doing pretty well and researchers tied it to the saltwater. I also take Xopenex to clear my lungs before my hypertonic saline. 

When the unfortunate and inevitable happens and I get sick, I take IV antibiotics to help me recover. I will also add a nasal therapy in the morning and night with Fluctisone and Saline spray. Then to clear out my sinuses I will use a netty pot up to 4 times a week. 

I take several other supplements like Juice Plus because they have helped me feel well over the years. I drink a smoothie which includes UMP chocolate (found on Amazon), bananas, ice and Wowbutter (my daughter is allergic to tree nuts and peanuts). I take a laxative powder called Miralax twice a week to make sure that I don’t get constipated. I also take fish oils and other small vitamins to improve my health. Read more about my diet here: diet-and-cystic-fibrosis and here: shedding-light-on-the-cf-diet

So there you have it! This is my daily, weekly and monthly medication and treatment routine. It takes up a large chunk of my time to maintain this regimen but it is vital to me staying healthy and being the best father, husband, son and brother I can be.

Note: Please don’t change your current routine until you have spoken to your physician. Live your dreams and love your life.

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