Wed, 29 October 2014
CF is often called an invisible disease. It’s invisible in the sense that you can’t quite see what’s going on underneath my skin. If you saw me walking down the street, your first thought might be, “wow that guy looks like a stud!” not, “wow that guy looks horribly ill.” While I may consider myself a stud (hopefully chicks around the world do too), I probably do fit the “horribly ill” description to an extent. It is certainly not bad that CF is an invisible disease, but it can be misrepresented as a result, so here is my list of 7 things that go on inside a CF patient. I chose 7 because 7 is my favorite number, and the CF gene is located on the 7th chromosome, duh. Science.
1. I am not a sick kid
Yes, I do realize that having the cough of a 60-year-old smoker, taking dozens of pills daily, doing hours of breathing treatments and occasionally coughing up blood doesn’t quite define the word healthy, but it works for me. As far as I am concerned, I can really do whatever the hell I want. While I do have some limitations, they are not necessarily set in stone. My body does handle the rigors of everyday life pretty well. Thank you science. Seriously, though, if CF kicks my ass one day, I damn well expect myself to get out of bed the next morning and carry on with my day. If there is anything CF has taught me, it is that hard work pays off. I can immediately see results when I am an active go-getter or a lazy bum. It’s up to me to decide who I want to be.
2. If I look exhausted, I probably am
Sleep can be very hard to come by. Have you ever had a cold or what we call “a cough,” and haven’t been able to fall asleep? I know Drew Brees has because he does those Nyquil commercials all the time. Imagine that feeling quite a few times throughout the year, but for days or weeks on end. Sometimes, that could be a regular feeling for me or anyone with CF. I’ll be the first to tell you, a persistent cough is a pain in the ass. Further, though, when I am sick, I’m usually up late into the night doing an IV infusion, then getting up real early to follow up with another IV infusion. It’s funny, whenever I’m sick, I’m always told to get as much sleep as I can. Hell, I’m always told to make time for rest even if I’m not sick. Not really the easiest thing in the whole world. The fact of the matter is that a CF patient is constantly fighting infection, and it weighs heavily on us. By the time it’s 5 or 6 in the afternoon, I’m usually exhausted looking for my second wind.
3. Stress is unavoidable
CF is as much of a mind game as it is a physical challenge. I find myself constantly playing out scenarios in my head. Just like anyone with or without CF, my decisions can have unintended consequences. Unfortunately, I found that out the hard way in college. When I was a freshman, or I guess, maybe a sophomore too, being up three or four nights in a row until the crack of dawn wasn’t the worst thing in the world, but as I got older after years of beating myself into the ground, that changed. Consecutive nights of that kind of behavior now, would lead to weeks of being sick. Not fun. That epitomizes some of the decisions I have to make, though. I am 23 years old; I am supposed to get myself into all kinds of messes, but I have to know what that can do to me. I find myself getting pulled in a million different directions from time to time. Should I really be getting up at 5:30 in the morning to go to the rink tomorrow? It’s my best friend’s birthday tonight; can I stay out until the sun comes up? I didn’t get home from my football game until 1:30 last night and didn’t finish my treatments until an hour and a half later, should I really be going out and doing much today? Here’s the deal, I am very much the kind of person that loves to do anything whenever I have the opportunity to do so, but I deal with an immense amount of frustration and stress when it comes to not doing something that I want to do. I know that I am not letting down the people around me in my life when I have to say no, but it feels like I am when I have to shut it down.
4. Sometimes pain is a reality
I know it’s a cliché, but pain really is weakness leaving the body. There are times when I don’t have any clue what is hurting, but whatever it is, it hurts. The pin pricks, stitches, and needle sticks are one thing, but chest pain and general aches are in a whole different category. Sometimes there’s no better way to deal with pain than to just ignore it. If I allow myself to be consumed by one thing, no good can come of it. I’ll tell you what; I will not allow myself to be consumed by pain of all things. It comes and goes, from time to time, but in the grand scheme of things, it does do a hell of a job of toughening people up. For me, or anyone with CF, it’s just a part of life.
5. Being admitted to the hospital isn't all it's cracked up to be
There’s this show on Fox called Red Band Society, and to be quite frank, it’s horrible. If you actually enjoy watching it, I seriously question what you consider entertaining. I really think it would be a small miracle if the show gets renewed for a second season. For those of you who haven’t watched it, or don’t know what it is (sadly I can’t include myself in that group), it is a show about a bunch of teenagers that live (?) in a hospital. Yeah, I don’t really get it either. Anyways, each kid has a different issue ranging from cancer all the way to cystic fibrosis. Normally I would say any press is good press when it comes to awareness around the disease, but not in this case. In the first episode, my man with CF is seen in a closet smoking the weed. Here’s the honest truth – I would be six-feet-under in about five seconds if I ever did that, so I’m going to go out on a limb and say that this show sends the wrong message about CF patients, but I digress. What really gets me, though, when it comes to this show is how
6. No, I do not include myself in the Ebola panic in New York City
While I realize that Ebola is an extremely dangerous virus and it is not something to overlook, I do not wear a surgical mask on the subway here in New York City just because there is an Ebola “scare” here in the city. Someone looked me straight in the eye the other day and said, “don’t you think you’re overreacting a bit, buddy?” I laughed and kept walking. The truth of the matter is that I am far more likely to be in direct contact with someone that has the flu, than I am to have even the remotest of ties to someone that has been exposed to the Ebola virus. I can confidently say that I am not going to get Ebola, and neither are you. The flu, however, can be horrible for a CF patient, even life changing, so to be completely honest, I don’t really care what people think of me when they see me walking through Penn Station with a surgical mask on. Here’s the deal, I have things to do, people to see and job commitments to live up to, so I don’t have time to come down with the flu or any other virus for that matter. I’ll wear my surgical mask whenever I want. It usually gets me my own seat on the train, too, so that’s a major positive, I think. No one wants to sit with a sick kid, duh.
7. I'm actually just a regular guy
It’s not like I am a part of an exclusive club or cult or something. I just have a genetic disease – that’s about it. I say that with some sarcasm, but really it’s not taboo or anything to talk about cystic fibrosis with me. Many CF patients are open about their disease, obviously I am too, but I very frequently sense hesitation when the subject is approached. There’s nothing wrong with it. Beyond CF, though, I have my hopes, dreams, passions and desires just like everyone else. I also realize that sounded very mushy and weird, so for the record, I do go out drinking and go to football games and put steaks on the grill and stuff like that with my buddies too. In all seriousness, for the time being CF may be with me, but it is not the whole story.
While it may seem like some of these things underneath the skin of CF may suck, and they do, I have made it this far in life and managed to be pretty happy. For me, dealing with cystic fibrosis is all about balancing things out and outweighing the negative with the positive. Whether we like it or not, life is full of challenges – It’s just a matter of whether or not we choose to overcome them.
Category:general -- posted at: 7:02 PM
Mon, 20 October 2014
Jerry Cahill, my CF hero, and I sat down and had a talk about how he has gotten so far in life. He is quite the inspiration. He’s now 58 years old and living post-double-lung-transplant. Some of us around the foundation call him “old man.” Here’s the deal, though, having CF at 58 years old is quite the accomplishment, so he takes it like a compliment, or so I hope.
His life very well could be the basis of a novel, so I hoped to dig a little bit up and see what he had to say.
In the podcast, Jerry explains why exercise has been such an important part of his life both before and after transplant. He thinks exercise is “good for the mind, body and spirit.”
He also shares with me why his life’s mantra is “You Cannot Fail.”
This “Own it” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Thu, 2 October 2014
It was brought to my attention earlier this week that people with cystic fibrosis, specifically young adults, have a tough time making new friends and maintaining friendships that they already have. I am not sure how I feel about that idea as a whole. With that being said, I guess I can understand it. There certainly are times when the disease is consuming. All I am thinking about is making it from one day to the next, but to be completely honest, I have always had a friend, coach or family member in my ear getting my mind off the sh*tty side of CF. Sure, there have been times when I have had to say no to a wild party night, or THE BEST NIGHT EVER, but, quite frankly, THE BEST NIGHT EVER seems to happen pretty frequently, so I don’t really mind if I miss one every once in a while.
I can’t make it sound like I don’t get frustrated when I am sick, because I do deal with a ton of frustration. It’s just one of those things that I have to overcome in my life. I just have to accept that I am not going to have to typical New York City young professional “work hard, play hard” lifestyle.
Truly, though, if I see the inside of a club, maybe once or twice a year, at ABSOLUTE most, I am a happy person. If I don’t see the inside of a club at all in the next 12 months, then that’s totally fine too. That is just not my idea of fun.
All joking aside, I have been very fortunate that my group of friends understand that about me. They know my days of staying out until the sun comes up are probably over for the most part. I had a good run in college, but, unfortunately, for me, I have always had to be a little ahead of the curve when it comes to growing up. I mean, at five years old, I had to recognize the difference between an antibiotic and an Advil. Now, if I am at a New York City bar that is open until 4:30am, I know I have to be out of there by about 1:30 if I don’t want to be paying for it for the next month.
My friends know that, they don’t hold it against me and they make it work for me. Sometimes they give up a little to get a little, and when I say get a little, I mean a lot, because they freaking get to hang out with me. WHO WOULD NOT WANT TO HANG OUT WITH ME??
Just kidding, but not really.
In all seriousness, though, that’s never been an issue with my friends. The hard truth of the matter is that if I tried to live a “work hard, play hard” lifestyle like my friends can, I would be driving myself six feet under pretty quickly, and my friends realize that. I think that might be something that scares some CF patients. There is this idea that they have to keep up, or they will be left behind. I am here to say that is not the case. There are times when saying no is okay, and maybe I am not around as much as some of my friends would like (Lynda, that’s you J), but they 100% understand why.
So, if you are a CF patient reading this, I don’t want to tell you how to live your life, because I am not all-knowing, but listen to me here, make that connection with your friends, they will support you, that’s why they are your friends.
I, obviously, can only speak from my experiences, but I can easily say that I could not have grown up with a better group of friends at every point in my life so far. From kindergarten and on, my classmates all knew about my CF. Any new friend that I make quickly learns why I cough so much and take an endless amount of pills each day.
My buddy David from high school went on to be one of my college roommates for all four years at BC, and he essentially got a taste of living and learning CF with me. In the ten years I have known him, he’s been there for quite a few of the good times and the bad. From the time I was coughing up blood on the football field sophomore year in high school to the freshman year college dorm room when we disastrously tried to shotgun cheap beers, we have gone through a lot of firsts together.
For many of the bad times, David was the first responder as well. I have to say that probably wasn’t what he signed on for when we thought being roommates might be fun. With that being said, he certainly hasn’t lost it yet when I have been down for the count with pneumonia or something. He usually figures out a way to bring me right back up.
All my friends have always wanted to be apart of my fight against the disease. A lot of them look forward to our BEF events and fundraisers every year. Dozens of my friends from grade school, high school and college have run for Team Boomer in the Boston, New York City and Chicago marathons as well as numerous half-marathons, or triathlons across the country. It’s hard to credit all of my friends and how much they have done on the fundraising front, but two of my best friends, Vince and Brian come to mind right away. Vince, another of my college roommates, raised over $15,000 when he ran the Boston Marathon our sophomore year at BC. Brian, one of my closest friends, and maybe even one of my first friends since age 2 or 3, raised an incredible $30,774 when he ran the New York City marathon last year. They, along with every single friend that I have, take everything I deal with in stride and try their best to make it a little easier for me every day.
Maybe most importantly, though, I’ve always had friends that are ready to step up and jump in front of a questionable situation that might be in front of me. The perfect examples are all of my college roommates. They knew my health always came first for me during our time at BC. If we were at a house party, they always knew I had to have my own cup regardless of how hard it was to get one. Because, as we know, cooties come from sharing cups at college parties, and that is a major concern for CF patients. As a freshman dude in college, there is probably no harder feat to achieve than getting your own red Solo Cup at an upperclassman’s party, but somehow my friends always managed to make it happen for me.
There were times when an idiot or two would try to light up a cigarette (or a drug that’s illegal in 48 states) indoors. Without fail we would be out the door and headed down the street to a new party to escape the smoke. If my friends and I were ever out, and there was even an ounce of danger directed at my lung health, I very rarely ever had to say something – the situation would just get handled.
I can remember back to this one time, junior year (at least I think it was junior year, it’s all kind of like a blur), and I was in line for a bar with my two other roommates, Carmen and Flynn. It was almost like someone flipped a switch, because the next thing we knew the students that were around us in line all suddenly started smoking. It was gross, but apparently that was the cool thing to do. We were very much stuck in the line, and I was totally willing to suck it up for a few minutes, but Carmen and Flynn went to work putting out the cigarettes one by one until we got into the bar. I didn’t get one dirty look from anyone around us, so I don’t even know what those two guys were telling people. It worked, though.
I realize that isn’t the craziest of stories, but things like that did not go unnoticed.
I never once felt like I was alone in college. My friends always had my back in college and still do. There’s always a watchful eye over me, and I think my parents and sister are grateful for that, I know I am. It’s not like I go around always making terrible decisions, because that’s not the case, but on the off chance that I do, someone is always there to say, “Gunnar, is that the best idea?” That extends far beyond my health too. There’s always someone that wants to get on the ice, go to a movie or grab a drink at a bar with me. Just like there’s always someone stopping me from pushing myself a little too far or downloading Tinder on my phone.
I don’t think I would ever trade my life for a different one. As far as I am concerned, the friendships that I have made along the way have really shaped who I am, and I really do like who I am.
I know all of my friends respect everything that I have to go through and know exactly how far I can take things. Obviously there are times when the rules can be broken and my limits can be pushed, like my 21st birthday, but I do know for a fact that a lot of them try to make things easier for me. Not that any of my friends would ever admit to it, but it is pretty easy to tell that’s what’s going on – because I can definitely tell CF isn’t as much of a struggle when some of my buddies are around. All I can say is thank you.
****If you are looking for something to read about friendship, teamwork and toughness, check out the book Fearless by Eric Blehm. It is the story of fallen Navy SEAL Adam Brown’s life. It is probably one of the most inspirational and motivational works I have ever read. One of my fellow football coaches recommended to me, and I am glad he did.****
Category:general -- posted at: 6:27 PM
Fri, 12 September 2014
Yesterday was the thirteenth anniversary of the September 11th terrorist attacks. In 2001, and for several years prior, the Boomer Esiason Foundation headquarters was located on the 101st floor of World Trade Center One inside of donated office space from the financial firm Cantor Fitzgerald. Thankfully, none of the BEF employees were in the office that day. The picture above features a Cincinnati Bengals football helmet that was one of many fresh out of the box on September 10th,2001. It survived the collapse of the towers and was found during the rescue efforts in the days that followed.
I was young, but I vividly remember the days before the attack when I was up on the 101st floor looking out over New York City through WTC1’s enormous windows. It was truly one of the most breathtaking views imaginable.
Every year around this time, I try to think about what is important in my life, and if I’m actually living my life to the fullest, because, quite frankly, there is a lot of s*** going on in the world. There’s also quite a bit going on in my life. Sometimes it isn’t the easiest thing in the whole world to keep my head straight on my shoulders, but I do my best.
There’s never an easy day when it comes to living with CF, but what I am talking about is much bigger than that. The seemingly endless of list of BS that goes on day in and day out is hard to articulate, but it all compounds into one word, stress. A five-minute conversation about politics is enough to wind someone up. Add that to being stuck in traffic, missing a commuter train, dealing with an illness, fighting with a friend, feeling lonely, being cheated on, losing a bet or anything that could bother any one of us. What does that all add up to? Well for one, a headache, but any combination of those things is nightmarish. More times than not, the things we worry about drive us to the brink of going crazy.
I am here to tell you that you can find peace. We can all find peace through the things that are important to us.
Anything that is truly important in my life can take me away from everything else that goes on in the world. The kind of things that have led to some of the best memories I have.
Obviously, the first thing that comes to mind is family time. I have already written about the roles my sister and parents play in my life. Very simply put (and if you don’t want to read those posts), I think there is nothing more important in my life than my family. I think that is only scratching the surface, though. It goes without saying that spending time with my family, friends and my (nonexistent) girlfriend are cherished moments, but we all need something else – something that drives us individually. Or, really, what makes Gunnar get out of bed and go every morning? What do I look forward to? What do I strive for?
I am all about fun. No, that doesn’t mean I love going out to the club “with my boyssss.” Fun, for me, is when I am happy – a few things come to mind. There’s nothing quite like playing pond hockey in the middle of the winter, Friday night high school football or talking about nothing for hours on end with someone.
Pond hockey is one of the most liberating experiences there is. The pond does not have boundaries. The air is crystal clear and there is a rock hard ice surface that allows the puck to slide forever. Only the sunlight dictates how long the day on the pond lasts. It is freedom in every sense of the word for a hockey player.
High school football is probably the purest form of football that exists. I love coaching these games because it is amazing to see the amount of pride all of the high school kids have just to put on their school’s jersey and play underneath the lights. It is a genuine celebration of hope, athleticism and community. Winning makes the night even better.
Finally, human interaction is not obsolete. Texting is one thing, but actually talking to someone and hearing emotion rather than trying to decipher emojis is a whole different ballgame. Last night, a college buddy of mine, Max, called me asking about a fantasy football trade. Before we knew it, it was an hour later and we were talking about our junior year at BC. It’s easy to get lost when you’re actually talking to someone.
Getting lost is a good thing. It separates us from the rest of the world. It allows us to think independently and confidently about anything we want, rather than getting caught up in the inevitable stress the world throws at us. It’s okay to slow down.
Find peace in your life.
When it comes down to it, we are only going to get so many opportunities to do what we love – the kind of moments that draw personal happiness, and that is important. It is always a sad time of the year right around now, but I try to spin it as positively as I can. If being so close to the September 11th tragedy, perhaps one of the most devastating events that’s ever happened, has taught me anything, it is to live, because everything and anything can change in the blink of an eye.
Find out what is important for you. Find out what gives you happiness and draw every little last inch out of it until your heart is full.
***I want to dedicate this post to Timmy O’Brien and Michael Seaman – lost on September 11th, 2001, but always with us.
Category:general -- posted at: 7:16 PM
Mon, 18 August 2014
The truth of the matter is that I just don’t have time to be sick, or I guess sicker than normal. Between working at the BEF, coaching, trying to have a social life and a million other things I have going on day to day, there’s just no left over time to deal with being sick. Unfortunately, as with any chronic illness, there’s really no choice in the matter.
Things were going pretty good for a while, but my CF popped up the other day, probably just to remind me that it was there. I woke up with a pretty nasty cough this past weekend. Who knows where it came from – my guess is the bacteria in my lungs, but what do I know.
For me, it’s pretty easy to tell when my health is about to go bad. First, the texture of my lovely green mucus changes. Normally, it’s thin, the way snot is probably supposed to taste and feel. When I’m not feeling so hot, like this past week, my mucus feels like yogurt. It tastes like **** too. Next, I might see a little blood mixed in with my mucus. That tastes pretty terrible also. Think of having a brick of iron in your mouth, but red, and not solid. Thankfully that doesn’t always happen, and didn’t happen during this flare up, but it’s definitely a sign things are going downhill pretty quickly. This time around, though, fatigue set in pretty quickly followed by my loss of appetite. Those are the, “time to get help” signs. I can deal with the mucus tasting bad and the inevitable increase in my awesome sounding cough, but feeling tired 24/7 is no fun. That’s where I draw the line.
Of course this all happened a week before high school football preseason starts up here in New York. So, it was decision-making time. Either try and fight it the old-fashioned way, you know, by letting my body take care of the job or call in the heavy hitter, the PICC line. As Darwin has taught us all (or so he thinks), only the fittest are going to survive, so modern science takes over where my body leaves off just about every time something like this happens.
The need for a PICC this time around probably wasn’t completely dire, but it made sense. In the CF world, especially at my age, we go for tune ups, or clean outs. Think of it like changing a car’s oil – a car can only go so far before getting serviced. I can only go so far before needing a little boost.
I went in Monday for a PICC placement, which is where I got the great selfie at the top of the post. It takes about 20 minutes to get the whole thing done and stitched into my skin. I realize I’ve now said “PICC” three times without actually explaining it, so for those who don’t know what a PICC line is; it’s essentially a longer, more permanent IV. Like I said, I get mine stitched in place. In first or second grade, I nearly had one fall out of my arm during a course of antibiotics, so I have decided to play it on the safer side ever since that little issue. This time around, the line is 40 cm long. It looks like a little worm when it gets pulled out. Or, I guess a long worm, because what worm is 40 cm long?
Here’s a fun fact about me: I used to do this weird thing when I was younger where I would keep all of my pulled PICC lines. I don’t really have much more to say about that, other than I used to have a little plastic bag full of PICC lines until my mom threw them out a few years ago. It was totally weird and gross. I guess I sort of felt like it was the equivalent of someone keeping his or her tonsils in a jar after getting them removed or something. Looking back, I now realize that I wasn’t even in the same ballpark.
Either way, the line is in now, and I went home to start antibiotics right after it was placed. I know some CF patients find it easier to stay in the hospital for a course of IVs, but that’s just not my style. I have always done home IV courses, with very few exceptions, and even then, to this point, I have only ever been hospitalized for a few nights at a time. Knock on wood. As far as I am concerned, I have a life to live, even if I am feeling sick. If I am feeling well enough to stand on my own two feet and walk around without any help, then I can do whatever the hell I want to do. I have a busy few weeks coming up, so I don’t have time to be sitting in a hospital bed. I have a few remaining responsibilities at the foundation this summer, football starts on Sunday night and then Hockey in two weeks. I don’t have a problem coaching, or even skating with a PICC line in. When it comes down to it, it’s just another little tube in my body. I already have one in my stomach, so it isn’t anything new. In fact, it looks like I’m connected to the Matrix or something when I am sleeping. I get totally wrapped up in all the tubes.
My prescribed antibiotics obviously change from course to course, but I typically spend around six hours a day hooked up to IV meds or fluids. That’s on top of the three hours I already spend doing my normal treatments, so it’s very much a full day process. I end up having to stay up late every night to finish a med and then get up early in the morning to keep the process on a timed schedule. Sleep is a little difficult to come by, but whatever. My mom doesn’t love how I sometimes handle it because I don’t sleep a whole lot, but if I feel like I really need some help with doing early morning or late night infusions, I’ll ask for it. With that being said, I have gotten to the point where I don’t really like asking for help with the PICC. I feel a little more independent when the PICC line works on my schedule. Come to think of it, my dad has accidentally pulled the cap off of it a few times, so he has lost his IV privileges all together. It’s okay, though, I probably wouldn’t be able to see the cap either if I was old and my eyes were starting to go.
In all fairness, my mom is the one who taught me how to keep a tight schedule, so I think I’ve really learned from the best. We have it down to a science. As soon as I start one infusion, everything, from the flushes, to the alcohol pads, to the next med, gets prepared for the subsequent infusion. Preparation makes everything easier in the long run.
I realize I am talking about this like it’s nothing, because for me, someone who has had like a million PICC lines, it really is nothing, but truly, the entire process must be sterile and very controlled. Whenever I am infusing, I move through the progressions very slowly and methodically. The end of the PICC line itself is right next to my heart, so God forbid the line got infected, or something went wrong during an infusion, disaster could strike in a heart beat (see what I did there?). Safety is my primary concern when I deal with the PICC, so I take nothing for granted. I have never once felt like I have put myself into any sort of danger. My golden rule is that if there is any question as to what I am doing, I close the line, wash my hands and start over. My time is valuable, but going into cardiac arrest isn’t on my list of things to do, so I can spare a few extra minutes here or there.
Dealing with a PICC line is very easy, though. In college, I used to infuse in the middle of class. The home healthcare service that covers me has these great little self-pump IV bags that are super tiny, so I could be sitting right next to you, infusing, and you would never know. I’m sure there were a few people that may have gotten a look at me during school and thought I was some sort of druggie, but whatever, I could hardly careless. I was getting the good stuff. I needed it to survive. People can think whatever the hell they want – it doesn’t bother me, it never has. I have even brought a PICC line with me on college spring break one year. That’s a story for another time, but I did it, and everything worked out totally fine.
In all seriousness though, next week during football preseason, I’ll bring three medication doses with me to the high school each day and complete them in between practices, during film sessions or in offense meetings. All of my players know what’s going on, there’s no secret. One of my keys to success is everyone being on the same page. I’ve got nothing to hide from my players, so I just go about my business teaching offensive schemes or breaking down films while I’m infusing antibiotics. It’s really just another day at the office. During the season, my biggest concern is how to exploit different defenses on a week-to-week basis. I can’t be thinking about what I may or may not look like while I am infusing an IV antibiotic in public.
The world does not stop when I get a PICC line. The antibiotics may eat up some of my time, but life is going to continue with or without me. I would rather be a part of it than sit on the sidelines watching. I have nine days left until I have complete freedom from the line, but until then I think I am still pretty independent.
Category:general -- posted at: 2:11 PM
Mon, 28 July 2014
My sister’s birthday is coming up, so I thought now would be a better time than any to write about her.
Sydney, my only sibling, is a year younger than me, just about to turn 22. She does not have CF, nor is she a carrier of the recessive gene. Thank God. She just graduated from Boston College and the world is definitely her oyster. Like we always say, it’s Sydney’s world, we’re just living in it.
Sydney is easily my best friend. We’ve definitely had our moments, like the time in high school when I picked her up and threw her across the room after she spent a half hour straight of annoying me, but I think we’re past all of that now. We love spending time together, especially when it’s just us. We don’t really get those opportunities as often now as we did before we both graduated college, but we definitely value every moment together.
As tough as things have sometimes been for me, they haven’t been much easier for her. I think it’s fair to say I probably received more attention from our parents when we were growing up for two reasons: first, my health has always been a priority for the whole family, and second, the more important reason, I was the perfect child, duh.
I don’t think she realizes it, but she has never once complained about anything, including her role in our family structure.
I think she may play arguably the most important part in my support system as a CF patient. My parents are obviously an enormous part of that, but as Sydney and I once decided, it is we two versus the world. Since we both went to the same college and our parents weren’t there with us, she would always go out of her way to make sure I was set with anything I needed. Whether it was a rack of Gatorade during a bout with the stomach flu, someone to talk to after a break up or someone to go shopping with for a formal dance (because I have no idea what to get if I am on my own in that department), Syd always answered the call of duty, and still does as a matter of fact. If I was ever sick, she was the one driving me into downtown Boston to see the doctor, or in some cases carrying all 6’3 of me into the Emergency Room.
My G-Tube once fell out, which, evidently, happens from time to time, and driving a car while my stomach was spilling out of my body wasn’t really an option, so at the crack of dawn on a Friday morning (not the easiest of times for any college student), Sydney had to come over to my room, help me plug the hole in my abdomen and then drive me down to Boston Children’s Hospital so I could get the tube replaced. I’m not sure if you have ever been in a position to smell (or plug, for that matter) the inside of a stomach, but it’s pretty gross. It doesn’t hurt at all, but it’s horrifyingly disgusting. Actually, it’s like dealing with vomit, so enjoy that picture in your head. Anyways, Sydney handled that one like a superstar.
During our time at BC, Syd had to drive us down to the hospital a few times, but those certainly aren’t the only memories we share. We did our best, or I guess I should say, she did her best to make sure I could take her out to dinner at least once a month. She’ll say it was great bonding time. I’ll say it was great bonding time too, up until the point when I had to play the part of the ATM. The first thing out of her mouth was always, “How have you been feeling?” and the last thing out of her mouth was always, “So, you’re paying right?” Even after college, I always have to pay. Always. She knows that first question, though, has been an easier question to ask when it’s just us without anyone else around. During my senior year of college, I actually found out that question, most of the time, was really coming from my mom, but Syd has always been genuinely concerned about me too, so I can’t take all of the credit away from her. Here’s the thing, Sydney and my roommates were all like little spies for my mom while we were all away at school and mom was home. My mom always felt like I would never give her an honest answer about my health because I never wanted to go home and get checked out by the doctor. Sydney, on the other hand, would always get an honest answer from me.
Aside from asking how I was feeling, Syd would always make sure I was doing okay socially. She is like a self-proclaimed social coordinator for me sometimes. She has always made sure that I have something to do, so that I’m not sitting on my ass. She loves to get out and have fun, so she wants to see me doing the same thing. It’s really a bonus for us when we end up at the same place with all of our friends. As a result of this, though, she has sort of asserted herself as the person who gets the last word on any girl I even think about taking out on a date or something. That’s a good and bad thing. It’s good in the sense that she can keep my standards up, as well as making sure I’m not hanging out with some idiot, but it’s a bad thing too because mega-bitch Sydney can come out and scare away any potential girlfriend candidate. Mega-bitch Sydney very rarely comes out, but it has happened before…. The one that got away…. Sorry Syd.
In all seriousness, Sydney has been a real champ. She deals with a crazy amount of stress and frustration because of me. It’s never fun to see a sibling laying in a hospital bed or coming out of anesthesia. Unfortunately for Sydney, she has seen that sight far too many times. She tries to have fun with it, though. If I am coming out of anesthesia, she knows I am like an open book. She always loves to ask me tough personal questions, just so she can get any sort of upper hand on me. I have to say that because of her little fun that she likes to have, Sydney (and consequently my parents) now knows all of my darkest secrets. It’s really great.
I guess it’s hard to know how Sydney actually feels about all of this, but whether she likes it or not, big brother is always watching. I think I have a pretty good sense of what’s going on in her life and I am very grateful that she doesn’t have to deal with cystic fibrosis, physically, like I do. She has everything I would ever want in life without CF, good looks, athleticism, energy and a very bright future amongst other things, and I have no problem with any of that. Syd has her life, and I have mine, we both succeed with the cards we were dealt. She unconditionally gives me the only thing I would ever want from her, and that is the best friend I could ever ask for. Without Syd, God knows I would be totally lost when it comes to anything outside of school, work or medicine. She shows me how to live a normal life, or…well… not so normal since she still thinks she’s a little princess, but I love her anyway.
Category:general -- posted at: 2:54 PM
Tue, 15 July 2014
Last summer I went through a period of time when I could not stay hydrated. It was pretty tough – dehydration is no laughing matter. There’s vomiting, dizziness, exhaustion and really just a desire to do nothing at all. The summer was hot, and like any normal kid (I still like to consider myself a kid) I like being outside when there isn’t a cloud in the sky, but I was not bringing in enough fluids. I found myself in a seemingly never-ending cycle. First, dehydration would set in, then my energy supply would disappear, followed by a loss of appetite, and finally, before you knew it, I was sick as a dog heading into the hospital for IV antibiotics. Just like that, two weeks of my summer were ruined because of the IV therapy. It felt like I was doing IV treatments all summer, and it would never end. All in all, I spent a total of 10 weeks hooked up to the IV, on and off, from May through August.
Being constantly sick was new for me. I really do consider myself a relatively healthy CF patient, but for the first time in my life, I was unable to complete an entire summer recreational hockey season. Of 15 possible games, I think I played in three. That was unacceptable.
Obviously, I don’t contribute my little dehydration issue to being sick all summer, I think having just graduated college played somewhat of a part (you’ll find out all about that soon), but it definitely was a major problem.
The root of the issue was that I was losing salt faster than I normally do and also, I was not bringing in enough electrolytes, which was somewhat shocking because I LOVE Gatorade, probably more than I love myself. I spent a week trying to keep tabs on how much fluid I was bringing in. It turns out I really wasn’t drinking enough water or Gatorade. I was around three or four bottles per day, and that was simply not enough. Unfortunately, I was paying for it in a bad way. So, towards the end of August, and through September, I had to sort of adapt since I am a football coach and am outside every single day regardless of the heat. Gatorade, or any sports drink, had to be the drink of choice for me. The reason being is because Gatorade contains both salt and electrolytes. I’m no scientist, so, for now, we will leave the amount of salt and electrolytes at, “a lot.” Like I said, Gatorade is unrivaled in my opinion, especially the Lemon Lime flavor, so I have had no problem increasing my intake. I had to at very least double the amount I was taking in. The only issue with Gatorade is the amount of sugar, so for diabetics it’s not really a great option. Also, in the eyes of my mom, it really isn’t the greatest option either, but I digress.
Now, this is where I can cheat a little. For those of you keeping score I home, you may know that I have a G-Tube (see the previous blog!), otherwise known as a feeding tube. For those of you who didn’t know, well now you do. I love the thing, it’s like a little toy, and it’s great for moments like this. Somewhere along the line last August, my mom had a brilliant idea, and that was to give me Pedialyte. I hate to say it, but we’re all thinking it; Pedialyte tastes awful. If you are someone who says it tastes good, I call you a liar. Fortunately (or unfortunately depending on how you look at this), though, for me, anything that goes through the G-tube is tasteless. I usually get the 1L bottles of Pedialyte at the drug store and mix in a teaspoon of salt. Like I said, I don’t have to taste it, so who cares if I am making it worse. If there is a hot day, I’ll run half of the bottle through my G-tube over a couple minutes and then carry on with my day.
Obviously, water is totally fine to drink also. We’re all told over and over that we need to have what seems like 97 cups of water per day. Regardless, I have noticed a major improvement in my health since I have taken a conscious effort to fight off dehydration. Gatorade and Pedialyte are my two go to drinks to keep my “pee clear,” as they say. Keep in mind, as I have been writing this, I’ve also been eating a burrito and drinking a Coke while it’s hot, hazy and humid just outside my window, so, there’s that.
Please note, it is also more than worth it to watch fellow CF patient Jerry Cahill's "CF Wind Sprints" podcast concering hydration at the following Link
Category:general -- posted at: 2:54 PM
Tue, 8 July 2014
If I took my shirt off, unfortunately you wouldn’t see a chiseled movie star’s body. I’m not really looking like the guys from 300 these days. Rather, you would see scars from plenty of stitches or procedures, a lean figure, and a hole in my stomach with a white thing sticking out of it. That white thing is my G-tube, or my feeding tube.
Like many CF patients, I struggle to keep weight on my body because of the pancreatic deficiency associated with the disease. I might be 6’3, abnormal for someone with cystic fibrosis, but I am as light as a feather.
The feeding tube experience is still relatively new for me. I have only had it for barely over two years now. It had always been talked about and I dreaded the idea of getting one. I always associated feeding tubes with extreme malnourishment in third world countries, or for people who are really sick. I have since found out that I was wrong.
After I had a bout with pancreatitis my sophomore year of college, there was no running away from the feeding tube. Pancreatitis was horrible. If you have had it before, you know exactly what I am talking about. If you haven’t had it, or haven’t even heard of it, like me before I was sitting in the hospital with it, the short version of the illness (if that is even what it is considered) is that is causes a tremendous amount of abdominal pain because of swelling or something like that. I’m no scientist, but I think that’s what was going on. It was just horrible. I hope you never have to deal with it, ever. The hospital staff equated the pain to getting stabbed in the gut by a knife over and over and over again because the pain comes and goes every few minutes. If that is actually true, I really hope I never get stabbed by a knife. It’s also one of those things that the doctors really can’t do anything for. They tried to make things easier by offering me pain medicine. I will be the first one to tell you, I made a mistake there. I thought I was a tough guy and could get through it. I could not have been anymore wrong in my entire life. Advil was not cutting it. Like an idiot I refused to take anything stronger until day three when I took half of a painkiller. Other than that, I basically had to fast for what seemed like a week. Fasting supposedly shortens the symptoms. Who knows if that actually helped, but what it led to was rapid weight loss. After about a week and a half of not eating anything more than a piece of toast here or there, I had dropped down to 137 pounds. There was nothing glamorous about that; I was literally skin and bones. The conversation I had been dreading for years took place, it was time to get a feeding tube. One week after my sophomore year at Boston College ended, I was home and went into the operating room to get the tube put in.
I have to tell you, I freaking love the feeding tube. After two years, I now weigh 175 pounds. The worst part was the first two or three weeks after getting it put in. There was a surgery involved, so the familiar pain of pancreatitis was back, just this time for a completely different reason. I won’t lie; I was strung up on the couch for quite a while right after it got put in. They told me it would be 6-10 weeks before I could resume normal athletic activity. I made sure it was six. I put my skates on and played hockey exactly 42 days after surgery. I set that goal up so that I wouldn’t get complacent with just sitting around worrying about the new little part of me. I also wanted to prove to myself that I could actually play hockey with a tube inside me. I had no problem with playing that night – it was just really nice to get off the couch.
The feeding tube itself is exactly what it sounds like. It’s a little port that is basically 2-3 inches long, and it goes directly into my stomach. All I do is connect a 12-inch hose to it, and then put whatever I want through it. Primarily, I connect that hose to what looks like an IV pump. Liquid nutrition is pumped through the tube into my stomach overnight. It can take anywhere from 6-8 hours. That was probably the toughest part of it all. I had to learn how to sleep with my stomach connected to a pump. That really sucked because I used to sleep on my stomach, now I have to sleep on my back. Other than the “overnight feeds,” I can do a bolus feed. Basically, I just get a giant syringe out and shoot whatever I want through my feeding tube. The port acts like another mouth, and when I say, whatever I want, I really mean whatever I want. Once I became comfortable with it, I started shooting anything and everything through it.
I have plenty of college stories I could tell you that involve the G-Tube, this may not be the time or place, though.
On a more serious note, though, I am able to take in as much 5000 calories per day. That includes my overnight feeds, three square meals, and an extra bolus feed or two during the day. The weight flies on when I really want it to. I still have some work to go to get to my goal of 190 pounds, but I’ll get there, hopefully within the next six months. I have seen an increase in my energy and a pulmonary function testing as a result of all this too. I think the feeding tube is directly responsible.
The only negative, and I hardly consider it one, is the visual appearance of the tube itself. I’ll admit, it really isn’t the most attractive thing in the whole world. When I’m at the beach and I’m trying to show off my six pack, unfortunately my ripped abs aren’t the first thing the ladies see. I needed to find a level of comfort with my new visual appearance. It took about a month or so, but here’s the deal I cough loudly, I look lean and I have to spit a lot. I have plenty of reasons to think I stand out for being a little different, but I could hardly care less. I just accepted the fact that I have a tube in my stomach and if I am going to receive a negative judgment from someone, then that person can go screw, I get plenty of bad looks when I start coughing, so who cares. The G-tube is great, I love it, that’s all that matters.
Category:general -- posted at: 6:22 PM
Thu, 26 June 2014
I often get asked why I find it so easy to tell someone new about my cystic fibrosis. The first thing I say in response is that it actually really isn’t the easiest thing in the whole world, it is just easier tell someone about it up front rather than keeping a giant secret.
When I was really young, or I would tryout for a hockey team or football team, my parents always used to tell whoever the important “adult” or the coach what I was dealing with. That way if something ever went wrong, God forbid, there could be a sense of calm and control for that person. For me, though, I took on the responsibility of telling whomever I thought necessary at a young age.
I do understand, though, why it is so hard for some patients to talk about it openly. It makes people feel very different, and I get that. I don’t care what you think, but it is human nature to stay away from someone who you think might be sick, that is just the honest truth. Just think about any time you were in grade school. There always seemed to be a kid with a runny nose and anyone, with or without CF, was always taught to keep his or her distance from that kid, I get it. Well, unfortunately, a CF patient might be in that situation more than once.
There are a few different “techniques” that I think I have mastered over the years when it comes to openly discussing a terminal (hardly) illness.
1 - When I was younger (not to say that I don’t still do this, I do but better when I was younger), and my friends were also younger, as well as the new people I was meeting, I would just talk about it very generally. There was always the question, “hey why are you coughing so much.” No little kid is going to understand the severity or the intricacies of the disease, so I always just said I had a lung issue. More than often the conversation would end there, unless I was dealing with the kid who thought he was the smartest kid on the planet, or the kid, at the other end of the spectrum, who wasn’t the sharpest pencil in the box, so to say. At that point, I would always say to myself, “well I can’t turn back now, so I might as well keep talking about CF positively.” That was the most important part; I always had to talk positively. The thought of mortality doesn’t quite hit kids until they are just about done with high school or even through college. Believe me, I still have some friends who think they are going to live forever. Unfortunately, that’s not the case. If I talked positively about CF in front of other little classmates, teammates or whatever, I never got any sympathy in return, which is exactly how I wanted it. It also made the other kids think I wasn’t that different because I wasn’t worried or stressed about myself, which was nice.
2 - As I have gotten older, there have obviously been situations when I have needed to tell someone about CF and what I have to deal with. The biggest of all moments, up to this point was when I got to college. I had heard horror stories of kids (I get that a 18 year old freshman doesn’t want to be called a kid, but that’s my way of doing things) hiding the disease for years and becoming really sick because of it. I had also heard stories of kids completely removing themselves socially from the college culture because they couldn’t deal with CF publicly. I knew I did not want to be one of those people. I wanted to be one of the guys from Animal House, so I decided to just go for it. With that being said, my roommate went to high school with me, so he knew all about CF, to an extent, so maybe that made things easier, but still it was my job to break it to all of our new friends, not his. So, I used what I call the brunt force technique. The first night of college when it was time to do my treatments there just happened a bunch of fresh new faces in our room just hanging out trying to develop new relationships, just like we were, so I set up my nebulizer and vest, and went to work. At first many of them didn’t know what to say or how to react, then finally a brave soul asked me what the hell I was doing. The key is to wait for them to ask, once someone did, I laid it all out there and told them I had CF and this is what I had to do every day. Before I could stop talking about it, most of them chimed in saying something about how they knew what CF was and maybe even had a distant friend with the disease, or something like that. Two of the kids from that night ended up living with me for the next three years, so I would say it worked out. If I am ever in a big group of people, or staying somewhere new overnight, that is really the easiest way to handle it, the props (treatments) are really the key part there.
3 - This technique is probably a little more discreet, it also uses a prop, but is better suited for a smaller group of people, or even a date (if you’re into that sort of thing). I carry my daily pills around in a pillbox. It holds my enzymes and any antibiotics I might be on or even, Advil, Tylenol, and really just all those lovely things. If I am on a date, hopefully more often than not (a guy can hope), I will (not by accident) leave my pillbox on the table for a period of time. It may not seem like a big deal, but it’s there and it definitely stands out. Then, when the meal comes, I just open it up and start taking my enzymes like I am eating candy. If the girl (let’s stick with the date scenario) doesn’t say something about me taking the pills, because we all know how nervous she is to be on a date with ME, then maybe I say something or cough like I was choking and make mention of the pills. This is a proven formula, it works every single time, I promise. It breaks the ice, she will ask why I take them, and then BOOM, there’s the open door, now I can calmly tell her about cystic fibrosis because she’s interested. Now, since I’m on a date, not only do I not have to listen to her talk about herself, but also I don’t have to pretend I am interested in her. I, on the other hand, have something completely new and unique that she wants to listen to. There you go, I got you a new girlfriend and you were able to break the ice.
4 - My last technique is really just honesty. If it ever comes up in conversation, there is no negative side to saying, “hey, I have CF.” I have done it plenty of times in casual conversation, and just like my little date technique, a conversation will carry on. It is pretty easy to tell how far in depth to actually go based on the conversation, and that certainly will be on a case-by-case basis.
I have never met anyone that was completely turned off by the fact that I have CF. Most people won’t know what to say, and that is totally okay. Some might actually know what CF is, but I normally do all the talking anyways just so there is no confusion or fear that it might be contagious. It is important, though, to always sound positive and confident. Disaster will strike if the conversation turns negative, but here’s the deal, there is no reason to not be positive about your outlook on the disease. It is a pretty deadly thing that you are dealing with and you, if you have CF, have made it this far, that is something to be very proud about. Don’t let it get you down. As far as I am concerned, I am winning the fight, failure is not an option for me, and I want the person I am introducing to the disease to know that.
Category:general -- posted at: 3:33 PM
Mon, 23 June 2014
I spent the past couple days in Northern Kentucky and Ohio, more specifically, the Cincinnati area, where I was born and lived for the first few years of my life. I hardly have the right to call myself a Kentuckian since I’ve called Long Island home for so long, but I did live there in the early years and I do take a lot of pride in it. Most importantly, though, I was diagnosed with CF at Cincinnati Children’s Hospital. I can’t say I remember the day that happened; I was two and probably more concerned with picking my nose than learning about the serious uphill challenge I faced, but I have heard the story a million times and needless to say my family was given a rude awakening.
Traveling may not be the easiest thing to do, but it has to be done. I’m not going to sit at home all day and think about what may be out there. I have to see it and experience it all.
It may not be something many people think about, but traveling is pretty stressful for a CF patient. I get that going to the airport is no one’s favorite activity, but an overnight bag for someone with CF isn’t just a backpack. For a two-night trip this past week, I had three pieces of luggage, plus my backpack. I had one bag for clothes, another for medicine and my nebulizer and a third for my Frequencer, which is a chest percussion device to loosen mucus in my lungs during the treatment sessions. The medicine bag is almost always the biggest. Like I said, I keep my nebulizer in there, so that takes up a good amount of room. I also carry my inhaled medicines, which include some that need to be refrigerated with icepacks and some that need to stay room temperature. With those, I need to carry my neb cups. A neb cup is what the medicine goes inside in order for it to be nebulized (that may not be a word, but that’s what we say, so it works here) into my lungs. Also, so I can sterilize my neb cups, I bring a bottle of rubbing alcohol, dish-washing soap and an electric kettle to boil water. Oddly enough, the eight or nine pill bottles take up the least amount of room. The pills range all the way from daily digestive enzymes to antibiotics I may need just in case. Every single thing has its place, and nothing can be forgotten. Packing blows, dear God I hate it, but that’s the way it has to be.
I get to go back to Kentucky once a year for a Boomer Esiason Foundation event hosted by a dear family friend, Jack Cassidy. With all due respect to all of our other great fundraisers, this event is my favorite. Why? It’s simple, because we get to shoot guns. It’s a two-day sporting clay Pro-Am, and I absolutely love shooting sporting-clays. If you haven’t done it, you cannot judge me for loving it until you have tried it. If you have tried it and don’t love it like me – tough, that’s it.
This year was the sixteenth annual shoot, as we call it. I think I have only missed one, and it was because of a final exam I had as a sophomore in high school (needless to say I was not pleased that year). Since then, I have made a point of never missing it. It has also become a tradition for a bunch of my college buddies to make the trip with me, which is really awesome because they get to see a whole different part of the country and they get to see the BEF activity outside of New York. It’s actually gotten to the point where I’ve had friends fighting over who can go with me, but that’s a story for another time.
I could talk about the shoot for hours, but the trip was a little different this year because it also included going to the Cincinnati Children’s Hospital Celestial Ball, which is the hospital’s biggest annual fundraiser. It was a black-tie dinner held in downtown Cincinnati and my dad and I were honored this year. It was pretty cool. A bunch of my dad’s ex-teammates from his days with the Bengals were there, amongst 1300 other attendees. To kick off the program, a pretty emotional video was shown that featured my dad and me, but there were also several other really young CF patients that got to speak in the video. It is never easy to see a little kid stricken with CF, but it my heart I know the prognosis for them is much better now than it was for me 20 years ago, and I think I’ve been just fine so far. The video did nearly bring me to tears, though, and after that my dad, who was feeling the same way, and I had to go up on stage and say thank you to everyone who has supported the fight.
My dad always has a natural stage presence and was able to inspire the audience last night; he does an incredible job every time he gets a microphone in his hands. I can only hope to be as good of a public speaker as he is one day. I have really only been on stage in front of huge crowds maybe two dozen times, one of which being in 8th grade when I played in the Sound of Music (definitely not my best moment), so I don’t really command an audience quite as well as my dad does, but I don’t feel totally lost up there. Last night, though, I think it went pretty well. I tried to lighten the mood and make the audience laugh, so I told a story about the time was when I was just a little kid, and was so scared of getting an IV put in my arm that I ran out of an operating room (that too, is a story for another time). I got plenty of laughs and was able to make fun of my dad a little bit, so I would say it was a success.
All in all, the trip was great, and it was fun to break from the norm of the yearly Kentucky trip and go to Cincinnati for a night. I also got to see my first friend, (some would say my first girlfriend at the age of 3) Nikki. She has been a huge part of the fight from the very beginning, and it was really great, because I haven’t seen her in a few years.
Anyways, I need to get packing, I am leaving for New Hampshire tomorrow, another fundraiser – the mission doesn’t end until I, along with all those kids that were in the video shown at the dinner, don’t have to pack a medicine bag full of treatments every time we want to go anywhere. One day, we can all deal with the normal level of stress that comes with travelling, but we aren’t quite there yet.
Category:general -- posted at: 2:24 PM