Thank you cystic fibrosis.
How did I get to a point in my life where I can actually thank the terminal disease that robbed me of normalcy from the moment I was born? I often wonder that myself. I remember crying on my Superman comforter at the age 9 when hours earlier I opened up the "C" volume of the encyclopedia to learn that because I was born with two lousy genes, my life was on a timer that would likely go off at least 50 years before any of my friends. I had cystic fibrosis (CF), a disease that people knew very little about except that it was a killer of hopes and dreams.
Wearing this mask made me feel sicker than I already was.
Cystic fibrosis was always in the back of my mind growing up. I was the only kid who brought his mom along during our patrol trip to Disney World. It was not because she wanted to ride "It's a Small World After All" 10 times. She disguised it that she was a chaperone but she and I knew exactly why she was there. It was because I needed postural drainage therapy everyday. That's where my parents hit my sides, front and back to loosen the phlegm in my lungs. By the way, I learned long ago not to tell my teachers that my parents hit me everyday...it kind of disqualifies my mom and dad from parents of the year consideration.
That wasn't the only thing that made me look different because of CF. I was the only kid who trudged towards the principal's office at lunch to swallow pills, a skill that most of my peers would not master for another 15 to 20 years. In hindsight, it might have been cool to tell my peers that I was getting in trouble everyday hence my visits to the principal. I could have been the bad boy because a lot of bad boys look skinny and malnourished, right?
I was the only child whose biggest worry wasn't math or social studies tests but rather pulmonary function tests which decided whether a hospital stay was in order.
As I got older and my friends were applying to colleges, I was too busy worried about biannual trips to Chapel Hill, North Carolina to visit my CF specialist. I didn't think I would be able to go to college because my parents needed to do my therapy every day. It wasn't until my sophomore year of high school and the invention of The Vest that I was able to have some hope that I could live a life of independence. It's funny that most kids at 16 consider their independence a driver's license but for me it was an 80 pound machine and a vest to help me loosen mucus in my lungs. The irony was that to be independent, a 5'6" skinny kid had to lug around an 80 pound machine when I traveled. As I worked out and got stronger after college, Hill-Rom, the makers of The Vest, was actually building lighter machines.
In college, cystic fibrosis did the unthinkable. It made me wish I wasn't here anymore. I didn't like feeling different. I tried "normalcy" by stopping my meds and my treatments but instead of feeling less different, I felt more. I couldn't walk three steps without coughing. I couldn't play sports anymore. Worse, I hated being around anyone. I was skinny, depressed and failing out of school. I was barricading myself in my room for days at a time. Life was in a word, "unlivable."
It's a quarter century since those days hibernating in my room rooting for rather than fearing for my demise. I'm here today primarily because I finally understood that CF was not "causing" anything; I was. Instead of saying CF made me feel different, I had to reword it and say "I felt different because..." I had to learn accountability for my feelings and actions. I had to change my course of action in the classroom, the gym and in the everyday world.
Today I live mostly normal. I am a husband, a father, a little league coach for both of my kids, a workout fanatic, a motivational speaker, a fundraiser, an author and a person who just happens to have a disease that is the number one killer amongst genetic disorders in the United States. Yes, I do two to three hours of therapy and take 40 to 50 pills daily and my median life expectancy is still roughly 30 years shorter than my peers but I am alive and even more importantly I want to be alive and that's a 180 degree change compared to my college days.
I never liked holding a nebulizer, but by doing it everyday, it has allowed me to hold more precious things.
I am human though and I still dread going to quarterly doctor's appointments. I still worry about the future. I still wonder why my sister lost her battle after just 16 days and I'm still entrenched in mine. People often wonder how I can be so positive (Except about my Atlanta sports teams but who can blame me, right?) about life. The thing is I'm not always positive as my family will attest. I often deal with my anxiety and depression which I've sometimes found more difficult than CF itself. Despite every battle, I've learned a lesson that most people don't learn until it's too late...
Life for the most part is "NOT" unfair. Life is what you make out of it. There are opportunities to do so many special things. I could look at having CF as a dagger that killed my normalcy before I was old enough to understand what normalcy even was or I could understand some of the special things I've been able to participate in because I was born with this disease. For a long time, I chose the former but during the second half of my life I've learned to relish the latter.
There's no way I would have been able to do this in 2001 if it hadn't been for CF.
Ironic as it sounds, cystic fibrosis has saved my life. It has taught me the importance of physical fitness, emotional accountability and the appreciation for the little things that most people with two good genes take for granted.
I'm not the same person I was back in my childhood days. Many of us aren't. The difference is that my change had to occur or I wouldn't be here today. One thing that hasn't changed since my younger days is that cystic fibrosis is still in the back of my mind at just about every moment. The difference is how I respond to its constant beckoning. It is now less a feeling of fear and more appreciation for the journey it has taken me and the destination I have been fortunate to find.
Thank you cystic fibrosis.
Wearing a mask no longer makes me feel sick.
The Nebulizer Fighter: Andy Lipman's Battle against Cystic Fibrosis
Monday, December 11, 2017
Thursday, December 7, 2017
Why is it so hard to deal with anxiety and depression as opposed to say something physical like cystic fibrosis?
When you deal with cystic fibrosis as I do, people often tell you that you're heroic even though you may not do anything heroic. You're just a victim of circumstance. Granted, the work those of us put in can be defined as heroic but just having the disease is not one bit heroic.
When you deal with something mental like anxiety and depression which I also do, people often tell you to "snap out of it." Not many people unless they deal with mental illness or work as a therapist see the heroism but trust me there are some days that surviving those 24 hours when your brain does not want you to could be labeled heroic.
Mental illness is stereotyped very negatively in this country because of some of the awful things that have happened regarding guns and mental illness. Trust me though, there are some amazing people in this world that deal with mental illness too. It could be your neighbor, your best friend or quite frankly anyone you know. Most likely, you'll never know because this disease is most likely "invisible" to outsiders.
I deal with depression and anxiety but I used to look at mental illness the way most people did. I saw it as a cop out. Now that I've been diagnosed and am on meds, I see the difference it has made in my life.
Nearly 1 in 5 Americans deal with some sort of mental illness and around 450 million people worldwide currently suffer from such conditions, placing mental disorders among the leading causes of disability globally.
Please help erase the negative stereotypes of mental illness and pull for the millions of invisible heroes around the world.
After all, one day, like me, you may realize that you are one of them.
Thank you!
When you deal with cystic fibrosis as I do, people often tell you that you're heroic even though you may not do anything heroic. You're just a victim of circumstance. Granted, the work those of us put in can be defined as heroic but just having the disease is not one bit heroic.
When you deal with something mental like anxiety and depression which I also do, people often tell you to "snap out of it." Not many people unless they deal with mental illness or work as a therapist see the heroism but trust me there are some days that surviving those 24 hours when your brain does not want you to could be labeled heroic.
Mental illness is stereotyped very negatively in this country because of some of the awful things that have happened regarding guns and mental illness. Trust me though, there are some amazing people in this world that deal with mental illness too. It could be your neighbor, your best friend or quite frankly anyone you know. Most likely, you'll never know because this disease is most likely "invisible" to outsiders.
I deal with depression and anxiety but I used to look at mental illness the way most people did. I saw it as a cop out. Now that I've been diagnosed and am on meds, I see the difference it has made in my life.
Nearly 1 in 5 Americans deal with some sort of mental illness and around 450 million people worldwide currently suffer from such conditions, placing mental disorders among the leading causes of disability globally.
Please help erase the negative stereotypes of mental illness and pull for the millions of invisible heroes around the world.
After all, one day, like me, you may realize that you are one of them.
Thank you!
My Russian Roulette
You ever heard of the game Russian Roulette? A person puts a gun to his head and he doesn't know if a bullet will come out when he pulls the trigger. How about a Major League baseball prospect who uses a radar gun to determine if he is going to get signed by a scout? Or maybe you have a test to take and you realize you didn't study the right material when you see the questions and you know that test counts for 90 percent of your grade.
What do all 3 of these things in common? The results could vary but regardless there is a lot is riding on them.
That segues perfectly into the PFT or should I say the Russian Roulette of cystic fibrosis. The PFT or pulmonary function test is a test that has a patient breathe in and then blow out as hard as he or she can three to four times and the results give you several numbers but one in particular which determines a lot. It's called the FEV1 and this determines how much you breathe out in the first second. This number can determine antibiotics, hospital stays or even being put on the transplant list.
I go to the clinic tomorrow to take my Russian Roulette, I mean PFT. This appointment is sooner than normal since my numbers have been down. Over the past few months, I've experienced some tightness in my lungs so I've combatted it with the only thing I know how...being aggressive with medicine and working out every day like there is no tomorrow.
Over the last few months (other than some of our travel days), I have been putting in 45 minute workouts including lifting weights, ab workouts, 1,800 jump ropes and 600 jumping jacks per day. I'm running between 1 and 4 miles per day and did the Peachtree Road Race in record time in July. I'm working out with a trainer once or twice a week. I'm doing three 45 minute therapies each day and cutting down to two on the weekend. I've added swimming laps to my routine. They're not typical laps though. I swim to the end of the pool (not regulation length) and back without a breath six times (taking breaks in between) and then do a few other laps in between. In comparison, a few years ago, I would be lucky to do half a lap without a breath. I've gained some weight which is good with CF but I'm now trying to eat a little better so that the gain is mostly muscle and not Rice Krispie Treats...I mean fat. Ha Ha! I am also doing research by asking questions to doctors and finding out what kind of machinery works for patients (my nebulizer machine blew while I was in Europe - thank goodness I brought a portable backup device) and have bought a new cleaning device as well as a new nebulizer machine. What hasn't changed is taking 40 to 50 pills per day and being anxious about tomorrow's PFT.
Two months ago after a bad test at the doctor, I went home and the next day did about 15 PFT's. The average person should do 3 max! Needless to say on the last one, I blew so hard that blood came out of my throat and onto my portable device. I was freaked out, exhausted and deflated. And for the last few months I've been gun-shy about doing a PFT for the fear of low results and obviously blood spewing out.
CF requires giving it everything and some days it's about giving it more. While this doesn't always make a difference in the numbers, it makes a difference in how one feels mentally. I still deal with anxiety and depression and I know it's not easy on my family. I go months closing myself off but I'm working on that. It helps to have the strongest person I know in my corner, my wife. Without her, I seriously do not know where I would be.
There are a lot of bright spots right now. Vertex Pharmaceuticals is working on a triple drug combination that will finally include my genotype. It will probably be available in 2019 but maybe even as soon as 2018. The swimming has allowed me to have time with my kids and become an Olympic Champion at finding dive toys. I realize even more how amazing my wife is and how fortunate I am to have her. Finally, life, while difficult at times, is still precious.
Live your dreams and love your life!
Andy
What do all 3 of these things in common? The results could vary but regardless there is a lot is riding on them.
That segues perfectly into the PFT or should I say the Russian Roulette of cystic fibrosis. The PFT or pulmonary function test is a test that has a patient breathe in and then blow out as hard as he or she can three to four times and the results give you several numbers but one in particular which determines a lot. It's called the FEV1 and this determines how much you breathe out in the first second. This number can determine antibiotics, hospital stays or even being put on the transplant list.
I go to the clinic tomorrow to take my Russian Roulette, I mean PFT. This appointment is sooner than normal since my numbers have been down. Over the past few months, I've experienced some tightness in my lungs so I've combatted it with the only thing I know how...being aggressive with medicine and working out every day like there is no tomorrow.
Over the last few months (other than some of our travel days), I have been putting in 45 minute workouts including lifting weights, ab workouts, 1,800 jump ropes and 600 jumping jacks per day. I'm running between 1 and 4 miles per day and did the Peachtree Road Race in record time in July. I'm working out with a trainer once or twice a week. I'm doing three 45 minute therapies each day and cutting down to two on the weekend. I've added swimming laps to my routine. They're not typical laps though. I swim to the end of the pool (not regulation length) and back without a breath six times (taking breaks in between) and then do a few other laps in between. In comparison, a few years ago, I would be lucky to do half a lap without a breath. I've gained some weight which is good with CF but I'm now trying to eat a little better so that the gain is mostly muscle and not Rice Krispie Treats...I mean fat. Ha Ha! I am also doing research by asking questions to doctors and finding out what kind of machinery works for patients (my nebulizer machine blew while I was in Europe - thank goodness I brought a portable backup device) and have bought a new cleaning device as well as a new nebulizer machine. What hasn't changed is taking 40 to 50 pills per day and being anxious about tomorrow's PFT.
Two months ago after a bad test at the doctor, I went home and the next day did about 15 PFT's. The average person should do 3 max! Needless to say on the last one, I blew so hard that blood came out of my throat and onto my portable device. I was freaked out, exhausted and deflated. And for the last few months I've been gun-shy about doing a PFT for the fear of low results and obviously blood spewing out.
CF requires giving it everything and some days it's about giving it more. While this doesn't always make a difference in the numbers, it makes a difference in how one feels mentally. I still deal with anxiety and depression and I know it's not easy on my family. I go months closing myself off but I'm working on that. It helps to have the strongest person I know in my corner, my wife. Without her, I seriously do not know where I would be.
There are a lot of bright spots right now. Vertex Pharmaceuticals is working on a triple drug combination that will finally include my genotype. It will probably be available in 2019 but maybe even as soon as 2018. The swimming has allowed me to have time with my kids and become an Olympic Champion at finding dive toys. I realize even more how amazing my wife is and how fortunate I am to have her. Finally, life, while difficult at times, is still precious.
Live your dreams and love your life!
Andy
Tuesday, July 4, 2017
The Rewards of Invincibility
When I was five, I found myself running upstairs though quite often coughing, digging through my drawers and throwing on my short-sleeved royal blue Superman shirt and a red cape with Velcro straps that I would hook around my neck. I would then dart to the top of the stairs with my arms raised as if I could fly anywhere at anytime and my cough while obvious to those around me was insignificant during those episodes because my focus was my feeling of invincibility. The title of "Superman" gave me that feeling of strength and determination that so often cystic fibrosis tried to take away.
I felt a bond with Superman early on...
Around the age of eight, I opened up an encyclopedia to learn that people with cystic fibrosis don't normally live to the age of 25. At least that's how it was in the early eighties. I was devastated. I went from a feeling of invincibility to extremely vulnerability. I was not Superman. It was around that time that I stopped digging through my drawers to find the cape and ceased from raising my arms around the house because it just didn't seem to matter anymore. Superman was immortal. I, on the other hand, had less than two decades of mortality left.
The cape disappeared; was my desire next?
As I grew up, I learned that Superman was less about wearing a cape and an "S" on my chest and more of a feeling of hope and positivity. Invincibility, while a bit unrealistic, was probably healthy for someone like me. Why couldn't I beat cystic fibrosis? Why couldn't I challenge the stereotypes and the statistics? Why did I have to be okay with dying young?
It was around this time that I traded a cape and Superman shirt for athletic shoes and wristbands. I was learning to do something that cystic fibrosis was not supposed to "allow" me to do and that was RUNNING!
Granted, there were roadblocks along the way both mentally and physically as I would spit mucus with most steps and have to take breaks for coughing spasms but I did not quit. In 1997, I was able to run my first Peachtree Road Race, the largest 10 kilometer race in the United States. As a runner, I had to work a lot harder to get to where I needed to be than most people but I thrived at that. Over my 43 years on this earth, I have battled negative statistics that said I would never live to have children or grow grey hair because of my cystic fibrosis.
I suppose that I could make things easier on myself by accepting the role of Clark Kent but running taught me that being Superman is so much more fun. I have had people over the years tell me to make it easy on myself and turn it down a notch and while not at my peak health recently, I began to accept that. Maybe Clark Kent was who I was always supposed to be.
Well, you know what, that's a lot of BS!
I have lived 43 plus years with a daily routine of multiple therapies, copious amounts of pills and more vitamins than a local CVS and "easy" has not once had the decency to come visit me.
Why do I need to accept the role of Clark Kent? Why do I need less pressure? Why can't I be Superman?"
Having a chronic disease is a different beast. You can't ever be complacent. You can't accept "pretty good." You can't accept a new baseline because you're getting older. You have to be the best. So for now on, I proudly accept the moniker of Superman. I owe it to my five year old self and I owe it to my children to teach them that society's version of "status quo" does not have to cut it.
Being overly competitive has been a curse in that my mind is often filled with havoc; however, there is no doubt that the same aggressiveness and fierceness has kept me alive. I can't afford to abandon that mindset.
Perhaps a cape is just as important as a nebulizer for someone like me...
I can't look my children in the eyes knowing that I have accepted complacency over invincibility. How can I tell them to do their best in the classroom or on the field if I don't do it in the gym or in the doctor's office? I can't and I won't.
Some would say I'm insane to believe that I'm invincible but most would have said the same if I told them I would be living and breathing on this earth at the age of 43 with two children, several patches of grey and a workout routine that most people without CF could not handle.
So today marks my 21st consecutive year running the Peachtree Road Race. Today is supposed to be one of the most humid days in memory and my lungs are not quite where they need to me.
Clark Kent would not run this race.
I will.
It's time to teach them the lessons of invincibility.
I don't need a cape, an "S" on my chest or to stand at the stop of my steps with my hands raised to prove that I am Superman.
It's all about attitude...but a nebulizer and Superman headband never hurt anyone, right?
The 5 year old would be proud!
Live your dreams and love your life!
Andy
I felt a bond with Superman early on...
Around the age of eight, I opened up an encyclopedia to learn that people with cystic fibrosis don't normally live to the age of 25. At least that's how it was in the early eighties. I was devastated. I went from a feeling of invincibility to extremely vulnerability. I was not Superman. It was around that time that I stopped digging through my drawers to find the cape and ceased from raising my arms around the house because it just didn't seem to matter anymore. Superman was immortal. I, on the other hand, had less than two decades of mortality left.
The cape disappeared; was my desire next?
As I grew up, I learned that Superman was less about wearing a cape and an "S" on my chest and more of a feeling of hope and positivity. Invincibility, while a bit unrealistic, was probably healthy for someone like me. Why couldn't I beat cystic fibrosis? Why couldn't I challenge the stereotypes and the statistics? Why did I have to be okay with dying young?
It was around this time that I traded a cape and Superman shirt for athletic shoes and wristbands. I was learning to do something that cystic fibrosis was not supposed to "allow" me to do and that was RUNNING!
Granted, there were roadblocks along the way both mentally and physically as I would spit mucus with most steps and have to take breaks for coughing spasms but I did not quit. In 1997, I was able to run my first Peachtree Road Race, the largest 10 kilometer race in the United States. As a runner, I had to work a lot harder to get to where I needed to be than most people but I thrived at that. Over my 43 years on this earth, I have battled negative statistics that said I would never live to have children or grow grey hair because of my cystic fibrosis.
I suppose that I could make things easier on myself by accepting the role of Clark Kent but running taught me that being Superman is so much more fun. I have had people over the years tell me to make it easy on myself and turn it down a notch and while not at my peak health recently, I began to accept that. Maybe Clark Kent was who I was always supposed to be.
Well, you know what, that's a lot of BS!
I have lived 43 plus years with a daily routine of multiple therapies, copious amounts of pills and more vitamins than a local CVS and "easy" has not once had the decency to come visit me.
Why do I need to accept the role of Clark Kent? Why do I need less pressure? Why can't I be Superman?"
Having a chronic disease is a different beast. You can't ever be complacent. You can't accept "pretty good." You can't accept a new baseline because you're getting older. You have to be the best. So for now on, I proudly accept the moniker of Superman. I owe it to my five year old self and I owe it to my children to teach them that society's version of "status quo" does not have to cut it.
Being overly competitive has been a curse in that my mind is often filled with havoc; however, there is no doubt that the same aggressiveness and fierceness has kept me alive. I can't afford to abandon that mindset.
Perhaps a cape is just as important as a nebulizer for someone like me...
I can't look my children in the eyes knowing that I have accepted complacency over invincibility. How can I tell them to do their best in the classroom or on the field if I don't do it in the gym or in the doctor's office? I can't and I won't.
Some would say I'm insane to believe that I'm invincible but most would have said the same if I told them I would be living and breathing on this earth at the age of 43 with two children, several patches of grey and a workout routine that most people without CF could not handle.
So today marks my 21st consecutive year running the Peachtree Road Race. Today is supposed to be one of the most humid days in memory and my lungs are not quite where they need to me.
Clark Kent would not run this race.
I will.
It's time to teach them the lessons of invincibility.
I don't need a cape, an "S" on my chest or to stand at the stop of my steps with my hands raised to prove that I am Superman.
It's all about attitude...but a nebulizer and Superman headband never hurt anyone, right?
The 5 year old would be proud!
Live your dreams and love your life!
Andy
Friday, June 30, 2017
Fighting on two fronts: The Battle against CF & Mental Illness!
2 A.M. Monday June 26th at the Lipman abode...
Everyone ELSE is asleep. The good shows have long finished. The sports teams have all finished their games. There I sit still doing my treatments and cleaning all of my equipment. I still have tons of voicemails, texts and e-mails to answer but I can't seem to get myself to answer them. My anxiety is still running rampant and my exhaustion is at its highest point. I'm depressed. I hate CF...and right now, quite honestly I hate the way I feel!
This has been a tough 4 weeks. It started out when I got food poisoning and threw up about ten times one night early in the month. A week later, my son was in a baseball tournament and we were rear ended on a highway ramp in Atlanta on our way to the tournament. The other car was totaled. Fortunately neither Ethan nor I was hurt. Of course the insured did not have enough coverage so I had to file under my insurance and the two insurance companies have been fighting ever since and are finally closing in on an agreement though I feel like I've had to do a majority of the work dealing with phone call after phone call. In the meantime, my car will be in the shop another 6 weeks. Then of course most importantly I got the news that my lung function was down again and so we agreed to be aggressive and added a steroid, an inhaled sinus aerosol, three more oral antibiotics and TOBI (an aerosol antibiotic). It's been a bit overwhelming to say the least but I wanted to be in the best shape possible to enjoy the summer with my family. The funny thing is that in this timeframe, good things have happened too like Ethan getting his first medals in a baseball tournament, having an amazing Father's Day with my wife and children and getting to have lunch with my sister. The problem with anxiety and depression is that I really have to dig deep to remember these moments as the bad moments are stuck in the front of my mind.
Initially my PFT's went up a lot on all of the meds and then they went down a bit and then I blew so hard that I probably pulled something and bled a little during my last PFT a week ago. I have decided to give myself a few weeks off of PFT's to heal. The Peachtree (10k race), which I have run for 20 consecutive years, is only 4 days away and I intend to run it again. I have been training this week hardcore. I ran 4.5 miles on Monday, Tuesday and Thursday at a 10 to 11 minute per mile pace but most importantly only coughing an average of once every 10 minutes. That's key! I can still tell my breathing is a bit impaired and I'm more tired than usual. Some of that is the medicine of course.
The hardest thing right now is mentally I'm cooked. Just to give you an example, I wake up around 6:30 to start my antibiotics and don't finish all of my treatments for the morning until 10am which is when I work out for 90 minutes (including my run). Then I do my Tobi. Then after a 45 minute break, I do my afternoon treatments. At night, I have been starting my treatments at 10 P.M. and not finishing until 1 A.M. or sometimes as late as 2 A.M. Yikes!
That's when the loneliness and the anxiety set in. When no one else in the free world seems to be awake but me, I just hate sitting in the dark alone while steam flows out of my nebulizer. And I feel horrible that most nights I leave my family alone to go to sleep while I do my stuff. Yeah, the dogs stay down with me but they're not great conversationalists. Let's face it though; I'm not either right now. I don't want to talk to anyone. I talk enough to the most dangerous person I know...me! I will say that I have now watched Jaws and Jaws 2 more times than Spielberg himself.
My strength
Thank goodness for Andrea. She is so strong. She listens and she is not afraid to light a fire under my butt if I'm letting anxiety, depression and CF win. I honestly don't know what I'd do without her. I once heard that you're only as strong as your significant other. Well then, call me Hercules!
When I went off of Prednisone a week ago, I didn't wean off. In hindsight, I probably should have. My anxiety was crazy and it hasn't gone down much. I'm constantly pacing and worrying. I'm probably driving my family crazy which is not intentional. I have closed myself off to the outside world which I really started doing more than six months ago. I don't know what started it. I've been so into writing the CF Warrior Project that it's become less of a passion and more of a quest. Sometimes it's hard writing about people who are really struggling but it's awesome at the same time seeing the resolve that they fight with and the accomplishments that they achieve.
Summer and social media just don't seem to mesh for me. When you're sicker than normal and you see everyone (when you're depressed you see a skewed view of the world) laughing and going about their wonderful lives in exotic places (though we all know that Facebook is never that accurate), envy creeps in as much as you would not want to admit it. It's as if life goes on and I have to deal with my own crap which it does and I do. It's tough especially when you know that people think you're Superman. I've probably created that façade. I'm not Superman. I'm much closer to Clark Kent. The work I put in is worthy of the Man of Steel but the fears I deal with and the sadness I have trouble conquering don't put me in the same ballpark as the son of Jor-El.
Here is the positive news. Other than a little tightness which could very well be a combination of all the meds and my anxiety, I'm doing pretty well. I'm running with barely a cough. My weight is stable. My appetite is normal. I'm working out like a beast. I even played a softball double-header the other day. I can still tell I'm not 100 percent but I'm edging closer. I wish I could just snap my fingers and be the old me again but that's not how CF works. That's not how anxiety and depression work either unfortunately.
I know that there are other people with CF who are far worse. There are people with other diseases who are fighting tougher odds. Still this isn't all about me. It was easier when it was. Now I fight to stay healthy for my wife and kids. I fight to get healthy so I don't miss a trip, or a celebration, or even just a simple moment in time. That's a lot of pressure that I unduly put on myself. That's pressure that Andrea doesn't want me to put on myself. My therapist told me Wednesday that I put far too much pressure on myself and then he said to make sure to send him his check in time (hey, that doesn't help. Ha Ha!). My doctor once told me "You can't be Superman all the time!" So right now, I'm focusing on being Clark Kent and being okay with that.
I have shed tears more over the last month than I think I have over the last 5 years combined. I cry watching stories on the news about people suffering. I cry when I see a movie I haven't seen in years. I cry when I just talk. It's awful. I can't define my efforts, my personality, my love for life, my accomplishments on one PFT number or just feeling a little crummy. It's not healthy and quite honestly it's not helping.
I want to make a comeback from this. I really do. I know in my heart that things will be okay. I just have to snap out of this funk. I have been writing some comedy material lately and it makes me laugh. I will start reaching out to more of my friends soon. I'm sorry I haven't been myself in some time. I miss all of you but I especially miss me.
The good thing about bad times is surviving them and subsequently appreciating the good times. The tough thing about bad times is missing out on some stuff and falling behind on others. Time is just not something I have a lot of right now. I figure I spend nearly 6 hours a day on meds, 7 hours on sleeping and 2 hours on eating. I want the rest of that time for my family but I need to divvy some of it out to my friends.
I intend to get better whether it's tomorrow or 6 months from now. The journey is never easy but the destination is always worth it.
Thank you for listening.
Live your dreams and love your life. It's time I follow my own advice.
Andy
Soon!
Everyone ELSE is asleep. The good shows have long finished. The sports teams have all finished their games. There I sit still doing my treatments and cleaning all of my equipment. I still have tons of voicemails, texts and e-mails to answer but I can't seem to get myself to answer them. My anxiety is still running rampant and my exhaustion is at its highest point. I'm depressed. I hate CF...and right now, quite honestly I hate the way I feel!
This has been a tough 4 weeks. It started out when I got food poisoning and threw up about ten times one night early in the month. A week later, my son was in a baseball tournament and we were rear ended on a highway ramp in Atlanta on our way to the tournament. The other car was totaled. Fortunately neither Ethan nor I was hurt. Of course the insured did not have enough coverage so I had to file under my insurance and the two insurance companies have been fighting ever since and are finally closing in on an agreement though I feel like I've had to do a majority of the work dealing with phone call after phone call. In the meantime, my car will be in the shop another 6 weeks. Then of course most importantly I got the news that my lung function was down again and so we agreed to be aggressive and added a steroid, an inhaled sinus aerosol, three more oral antibiotics and TOBI (an aerosol antibiotic). It's been a bit overwhelming to say the least but I wanted to be in the best shape possible to enjoy the summer with my family. The funny thing is that in this timeframe, good things have happened too like Ethan getting his first medals in a baseball tournament, having an amazing Father's Day with my wife and children and getting to have lunch with my sister. The problem with anxiety and depression is that I really have to dig deep to remember these moments as the bad moments are stuck in the front of my mind.
Initially my PFT's went up a lot on all of the meds and then they went down a bit and then I blew so hard that I probably pulled something and bled a little during my last PFT a week ago. I have decided to give myself a few weeks off of PFT's to heal. The Peachtree (10k race), which I have run for 20 consecutive years, is only 4 days away and I intend to run it again. I have been training this week hardcore. I ran 4.5 miles on Monday, Tuesday and Thursday at a 10 to 11 minute per mile pace but most importantly only coughing an average of once every 10 minutes. That's key! I can still tell my breathing is a bit impaired and I'm more tired than usual. Some of that is the medicine of course.
The hardest thing right now is mentally I'm cooked. Just to give you an example, I wake up around 6:30 to start my antibiotics and don't finish all of my treatments for the morning until 10am which is when I work out for 90 minutes (including my run). Then I do my Tobi. Then after a 45 minute break, I do my afternoon treatments. At night, I have been starting my treatments at 10 P.M. and not finishing until 1 A.M. or sometimes as late as 2 A.M. Yikes!
That's when the loneliness and the anxiety set in. When no one else in the free world seems to be awake but me, I just hate sitting in the dark alone while steam flows out of my nebulizer. And I feel horrible that most nights I leave my family alone to go to sleep while I do my stuff. Yeah, the dogs stay down with me but they're not great conversationalists. Let's face it though; I'm not either right now. I don't want to talk to anyone. I talk enough to the most dangerous person I know...me! I will say that I have now watched Jaws and Jaws 2 more times than Spielberg himself.
My strength
Thank goodness for Andrea. She is so strong. She listens and she is not afraid to light a fire under my butt if I'm letting anxiety, depression and CF win. I honestly don't know what I'd do without her. I once heard that you're only as strong as your significant other. Well then, call me Hercules!
When I went off of Prednisone a week ago, I didn't wean off. In hindsight, I probably should have. My anxiety was crazy and it hasn't gone down much. I'm constantly pacing and worrying. I'm probably driving my family crazy which is not intentional. I have closed myself off to the outside world which I really started doing more than six months ago. I don't know what started it. I've been so into writing the CF Warrior Project that it's become less of a passion and more of a quest. Sometimes it's hard writing about people who are really struggling but it's awesome at the same time seeing the resolve that they fight with and the accomplishments that they achieve.
Summer and social media just don't seem to mesh for me. When you're sicker than normal and you see everyone (when you're depressed you see a skewed view of the world) laughing and going about their wonderful lives in exotic places (though we all know that Facebook is never that accurate), envy creeps in as much as you would not want to admit it. It's as if life goes on and I have to deal with my own crap which it does and I do. It's tough especially when you know that people think you're Superman. I've probably created that façade. I'm not Superman. I'm much closer to Clark Kent. The work I put in is worthy of the Man of Steel but the fears I deal with and the sadness I have trouble conquering don't put me in the same ballpark as the son of Jor-El.
Here is the positive news. Other than a little tightness which could very well be a combination of all the meds and my anxiety, I'm doing pretty well. I'm running with barely a cough. My weight is stable. My appetite is normal. I'm working out like a beast. I even played a softball double-header the other day. I can still tell I'm not 100 percent but I'm edging closer. I wish I could just snap my fingers and be the old me again but that's not how CF works. That's not how anxiety and depression work either unfortunately.
I know that there are other people with CF who are far worse. There are people with other diseases who are fighting tougher odds. Still this isn't all about me. It was easier when it was. Now I fight to stay healthy for my wife and kids. I fight to get healthy so I don't miss a trip, or a celebration, or even just a simple moment in time. That's a lot of pressure that I unduly put on myself. That's pressure that Andrea doesn't want me to put on myself. My therapist told me Wednesday that I put far too much pressure on myself and then he said to make sure to send him his check in time (hey, that doesn't help. Ha Ha!). My doctor once told me "You can't be Superman all the time!" So right now, I'm focusing on being Clark Kent and being okay with that.
I have shed tears more over the last month than I think I have over the last 5 years combined. I cry watching stories on the news about people suffering. I cry when I see a movie I haven't seen in years. I cry when I just talk. It's awful. I can't define my efforts, my personality, my love for life, my accomplishments on one PFT number or just feeling a little crummy. It's not healthy and quite honestly it's not helping.
I want to make a comeback from this. I really do. I know in my heart that things will be okay. I just have to snap out of this funk. I have been writing some comedy material lately and it makes me laugh. I will start reaching out to more of my friends soon. I'm sorry I haven't been myself in some time. I miss all of you but I especially miss me.
The good thing about bad times is surviving them and subsequently appreciating the good times. The tough thing about bad times is missing out on some stuff and falling behind on others. Time is just not something I have a lot of right now. I figure I spend nearly 6 hours a day on meds, 7 hours on sleeping and 2 hours on eating. I want the rest of that time for my family but I need to divvy some of it out to my friends.
I intend to get better whether it's tomorrow or 6 months from now. The journey is never easy but the destination is always worth it.
Thank you for listening.
Live your dreams and love your life. It's time I follow my own advice.
Andy
Soon!
Friday, May 5, 2017
Going back in time...
Thirty-six years ago, I sat in my den and innocently began reading the “C" volume of our encyclopedia set as I was doing a book report on Christopher Columbus. Moments later, my life would drastically change as I would come to the term “cystic fibrosis.” It was here that I would read “People with cystic fibrosis don’t typically live to the age of 25.” I remember reading the sentence over and over and even saying it out loud a few times hoping that I had read it wrong. When I confronted my parents, my mom cried and my dad didn’t know what to do. I ran up to my room and slammed the door and began planning my funeral in my head. I don’t remember ever crying so much and ever feeling so alone.
It’s been more than three and a half decades since that day and I still remember how hopeless I was at 7 years of age. I try to provide hope for so many people now but I feel like I owe it to seven-year old Andy to give him hope too. So crazy story, today I snatched a DeLorean, sped up to 88 mph and I’m back in my house on West Fontainebleau Drive and the year is 1980, or as my daughter calls it, “The Olden Times.”
Andy, don’t freak out. It’s me. Don’t say a word. Let me talk. I don’t have much time.
First off, I’m you 36 years later. Please don’t make fun of my grey hair or my $5 haircut. By the way, it’s $18 now. Where I come from it’s May 5, 2017. In case you can’t do the math and if I remember your math grades, you can’t; you’re 43 years old and you are not dead. Your humor? Well, that’s another story. I know that encyclopedia scared the crap (don’t tell mom I cursed) out of you but don’t get down. Here are some things to know. Tomorrow morning, our dad will get you into baseball. I know you hate sports but baseball will change the way you feel about them and the way you feel about your father. You will become very competitive and it will help with your fight against cystic fibrosis. By the way, loving sports will not skip a generation. Just be ready for your son. That’s all I’m saying. Hint: Go Panthers.
You know how you have that dream when things go bad and a little girl comes to check on you. Well, she’s going to check on you tonight. Don’t be afraid to ask her to help you. She’s someone very special. In fact, 20 years later, you’ll start a big charity event because of her. She’s the only other person in your family that understands what it’s like to have cystic fibrosis.
Don’t let people tell you what you can’t do. Show them what you can do. Statistics are just numbers. I probably shouldn’t tell you but you do end up finding someone very special who will love you for who you are (hard to believe I know) and you will eventually have children. In fact, this weekend we start the playoffs. Why does that matter? You’re helping coach both teams!!! I would ask for lineup advice but you’re probably not the one to ask. By the way, both of your kids are good athletes. Let’s credit that to your wife’s genes.
Here is some more insight into the next 36 years. There is not a cure for cystic fibrosis yet but we think it’s close. I know you are afraid to talk about cystic fibrosis and don’t want to know any more about it especially after reading the encyclopedia but you are going to take charge of it. In fact, you, your family and friends have raised $3.2 million for the CF Foundation to combat it. I know your mom is upset tonight but she plays a big role in the event’s fundraising. You are very lucky to have the parents that you do. You may hate reading now but you’re writing your 4th book as we speak. You hate being in a crowd of people so of course now you’re a public speaker. All of our sports teams suck. Some things never change. By the way, watch the Sugar Bowl over and over this year. I don’t want to get you down but it might be the last time we can celebrate a national title. In a few years, your reign as only child will end and you’ll be glad it did.
There is so much more to tell you but I’m out of time. Take care of yourself. Give Howard a big hug for me. He’s been peeing a lot in the basement by the way. Don’t tell mom.
Oh, and don’t tell anyone about our conversation. They might think it’s a bit strange.
Ok, gotta put some more Plutonium in the DeLorean. Go get ‘em, buddy! You’ve got a disease to conquer…and you will!
It’s been more than three and a half decades since that day and I still remember how hopeless I was at 7 years of age. I try to provide hope for so many people now but I feel like I owe it to seven-year old Andy to give him hope too. So crazy story, today I snatched a DeLorean, sped up to 88 mph and I’m back in my house on West Fontainebleau Drive and the year is 1980, or as my daughter calls it, “The Olden Times.”
Andy, don’t freak out. It’s me. Don’t say a word. Let me talk. I don’t have much time.
First off, I’m you 36 years later. Please don’t make fun of my grey hair or my $5 haircut. By the way, it’s $18 now. Where I come from it’s May 5, 2017. In case you can’t do the math and if I remember your math grades, you can’t; you’re 43 years old and you are not dead. Your humor? Well, that’s another story. I know that encyclopedia scared the crap (don’t tell mom I cursed) out of you but don’t get down. Here are some things to know. Tomorrow morning, our dad will get you into baseball. I know you hate sports but baseball will change the way you feel about them and the way you feel about your father. You will become very competitive and it will help with your fight against cystic fibrosis. By the way, loving sports will not skip a generation. Just be ready for your son. That’s all I’m saying. Hint: Go Panthers.
You know how you have that dream when things go bad and a little girl comes to check on you. Well, she’s going to check on you tonight. Don’t be afraid to ask her to help you. She’s someone very special. In fact, 20 years later, you’ll start a big charity event because of her. She’s the only other person in your family that understands what it’s like to have cystic fibrosis.
Don’t let people tell you what you can’t do. Show them what you can do. Statistics are just numbers. I probably shouldn’t tell you but you do end up finding someone very special who will love you for who you are (hard to believe I know) and you will eventually have children. In fact, this weekend we start the playoffs. Why does that matter? You’re helping coach both teams!!! I would ask for lineup advice but you’re probably not the one to ask. By the way, both of your kids are good athletes. Let’s credit that to your wife’s genes.
Here is some more insight into the next 36 years. There is not a cure for cystic fibrosis yet but we think it’s close. I know you are afraid to talk about cystic fibrosis and don’t want to know any more about it especially after reading the encyclopedia but you are going to take charge of it. In fact, you, your family and friends have raised $3.2 million for the CF Foundation to combat it. I know your mom is upset tonight but she plays a big role in the event’s fundraising. You are very lucky to have the parents that you do. You may hate reading now but you’re writing your 4th book as we speak. You hate being in a crowd of people so of course now you’re a public speaker. All of our sports teams suck. Some things never change. By the way, watch the Sugar Bowl over and over this year. I don’t want to get you down but it might be the last time we can celebrate a national title. In a few years, your reign as only child will end and you’ll be glad it did.
There is so much more to tell you but I’m out of time. Take care of yourself. Give Howard a big hug for me. He’s been peeing a lot in the basement by the way. Don’t tell mom.
Oh, and don’t tell anyone about our conversation. They might think it’s a bit strange.
Ok, gotta put some more Plutonium in the DeLorean. Go get ‘em, buddy! You’ve got a disease to conquer…and you will!
Thursday, March 2, 2017
My Breakthrough Drug or Just More Nonsense?
Having a chronic disease is difficult but it's even more difficult sometimes having high hopes for a cure or even just a major breakthrough and then reading that the trials failed to show any improvements in the participants. We hoped that the Ataluren trials would be the first breakthrough drug to target nonsense mutations (my genotype), however; today we received the news that Alturen would not be the miracle medication that we so dearly needed.
Here is the quote from Dr. Stuart Peltz who is the CEO of PTC Therapeutics, the company who developed Ataluren.
"We are disappointed with the outcome of this trial as there are no treatments that target the underlying cause of nonsense mutation cystic fibrosis, one of the most difficult forms to treat."
No, Lloyd, I'm not.
Ataluren is a therapy that was created to try and restore the protein designed to help enable the formation of a functioning protein in patients with genetic disorders caused by a nonsense mutation. A nonsense mutation is an alteration in the genetic code that stops the synthesis of the essential protein.
In layman's terms, back to the drawing board.
I didn't have much hope in the trials as rumor had it that the drug was unlikely to be successful. Still the positive side of this is that drug companies along with the CF Foundation are now targeting the nonsense mutations that affect myself and another 10% of the world's CF population.
I'm conflicted with all of the great news surrounding Kalydeco and Orkambi, two of the breakthrough drugs for cystic fibrosis. These two drugs combined help 50% of the CF population while people like me are left to wait. The hardest thing is when people forward you the great news about these drugs and you're forced to respond, "Great to hear. I'm not a candidate."
Vertex Pharmaceuticals announced both breakthrough drugs Kalydeco and Orkambi this decade.
I am thrilled for the people being helped but sometimes it's hard knowing that my breakthrough, much like a sports championship in my home city of Atlanta, is still probably years away. It's not just me though. I'm also concerned for the parents of young children who put all their eggs in one proverbial basket.
Again, it's not the end of the world. Treatments today are so much better than 20, 10, or even 5 years ago.
Our breakthrough is coming...
And I refuse to call that "nonsense."
I've got too much to fight for to let this keep me down.
Live your dreams and love your life.
Best Wishes,
Andy
Here is the quote from Dr. Stuart Peltz who is the CEO of PTC Therapeutics, the company who developed Ataluren.
"We are disappointed with the outcome of this trial as there are no treatments that target the underlying cause of nonsense mutation cystic fibrosis, one of the most difficult forms to treat."
No, Lloyd, I'm not.
Ataluren is a therapy that was created to try and restore the protein designed to help enable the formation of a functioning protein in patients with genetic disorders caused by a nonsense mutation. A nonsense mutation is an alteration in the genetic code that stops the synthesis of the essential protein.
In layman's terms, back to the drawing board.
I didn't have much hope in the trials as rumor had it that the drug was unlikely to be successful. Still the positive side of this is that drug companies along with the CF Foundation are now targeting the nonsense mutations that affect myself and another 10% of the world's CF population.
I'm conflicted with all of the great news surrounding Kalydeco and Orkambi, two of the breakthrough drugs for cystic fibrosis. These two drugs combined help 50% of the CF population while people like me are left to wait. The hardest thing is when people forward you the great news about these drugs and you're forced to respond, "Great to hear. I'm not a candidate."
Vertex Pharmaceuticals announced both breakthrough drugs Kalydeco and Orkambi this decade.
I am thrilled for the people being helped but sometimes it's hard knowing that my breakthrough, much like a sports championship in my home city of Atlanta, is still probably years away. It's not just me though. I'm also concerned for the parents of young children who put all their eggs in one proverbial basket.
Again, it's not the end of the world. Treatments today are so much better than 20, 10, or even 5 years ago.
Our breakthrough is coming...
And I refuse to call that "nonsense."
I've got too much to fight for to let this keep me down.
Live your dreams and love your life.
Best Wishes,
Andy
Subscribe to:
Posts (Atom)