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
Mon, 16 June 2014
It is hard to put into words what my parents have done for not only me, but also the cystic fibrosis community as a whole. As the story goes, my dad wanted to get involved in CF fundraising well before I was even born. He and my mom were at an awards dinner and Frank Deford was the keynote speaker. Frank talked about his daughter Alex, whom he lost to CF some years earlier. It really touched my dad, and so, it all began there.
In 1993, when I was two years old, I was diagnosed. My parents kicked it into high gear, and started the Boomer Esiason Foundation. Long story short, here we are 21 years later and things are going pretty good.
Whereas my mom is in unrelenting command of my health on the home front, my dad spends an enormous amount of his time raising money and awareness for all of us stricken with cystic fibrosis. Whether he’s on the radio, TV or computer screen, he is out there getting the message out that people can help us win this fight. I’m confident that you all know this already though.
On a more personal note, though, my dad has been a great mentor and taught me quite a few things along the way, probably nothing more important than never turning around on a commitment. He certainly leads by example. It seems like he has fifteen jobs, so I have to say this lesson has been drilled into me quite a bit. For as long as I can remember, I have been allowed to do pretty much whatever I have wanted as long as I see it all the way through. I guess you could say he really instilled a never give up attitude in me from the very beginning. No matter how tough things get, I know what my responsibilities are, and the number one responsibility is always my health, even when I am so sick I can hardly move. If I take care of every responsibility I set out for myself, I know my dad will be happy. I will too. I think happiness is certainly tied to a sense of accomplishment, and taking care of any responsibility can provide that feeling. So, when it comes down to it, I know I have two treatment sessions to do every single day, about 80 minutes each. No matter what time it is, or what is going, I’m going to do them. I can count the number of times I missed a treatment in college on one hand.
As long as I don’t put myself in harm’s way, everyone is generally happy in my family, especially my dad. That could be something as small as staying away from someone who just lit up a cigarette, or something as serious not playing hockey a few hours after coughing up blood. That really ties into the second most important thing he has taught me, and that is being able to say no. I have to tell you, I am pretty stubborn, and when I can’t do something that I want to do, I can get pretty worked up and angry. Just like the Hulk, you will not like Gunnar when he is angry, so, getting me to say no to something can be a real challenge. My dad always tells me that there is no one more important in my world, than me. That’s not the easiest thing to accept, but it makes sense. I think the way I finally learned that I needed to say no sometimes, was after getting pneumonia in the fall semester of my senior year at BC. Pneumonia put me on my back for about three weeks. For the first time in my life, I felt like I was actually drowning from the inside. There were a few nights in the hospital that Fall that were not so fun. I was discharged once I was no longer dependent on oxygen, and allowed to go back to school a week later. After that, I had one of those moments where I had to tell myself that dad had been right all along and no, I didn’t know everything. So, there it was, and from that point on, going out drinking until whenever had to be cut down. I needed to actually sleep and get back to being a normal human being, not just a college kid living in the Animal House. It’s not that the drinking was necessarily bad, but more so the fact that college life in general is just disgusting. Really, it was a small miracle I didn’t get pneumonia until my senior year.
My dad and I have been through a lot together. Some of it bad because of CF, but a lot of it has been pretty good. I think his favorite memory has got to be when we were at game 7 of the Stanley Cup Final in 1994 when the Rangers won it all. My dad is a HUGE hockey fan, and if you can’t tell, it sort of rubbed off on me. Sadly, I can’t say I remember that game because I was sleeping on his shoulder. How I was sleeping, I don’t think we will ever know. He always says it was the loudest sports venue he has ever been in. Three and a half years later, he didn’t put me in football pads; he put skates on my feet and threw me on the ice.
Now that I no longer play hockey super competitively (the dream really ended after high school), my dad and I play on a beer league team together. The year after retiring from the NFL, he took up hockey and learned how to skate. Now, he has made himself our first line center. OF COURSE. Come to think of it, he really considers himself to be like Mark Messier out there. We’ve all given him the nickname Reggie Dunlop, who is from the movie Slapshot, because he was the player/coach for the Charlestown Chiefs – dad is our player/coach (it’s a good and bad thing).
Playing together and going to just about every home Rangers game together, are probably our favorite things to do. Thinking about some of our past seasons and more specifically games we’ve played in, and been to, it is amazing my dad and I still talk to each other. There was one game specifically that comes to mind. I was maybe 14 or 15 years old and we were at a Ranger game. At the end of the 2nd period, the Rangers were getting blown out. It was bad, maybe 5-0, and my dad, like any New York fan, loves to get on the players of his favorite team. He started bad mouthing one player in particular, Nik Zherdev. At the time, Zherdev happened to be my favorite player because he played with style. I’ll agree he was a lazy player, but he could do things with the puck that were amazing. My dad was really laying into him to the point where my dad and I were screaming at each other in the middle of the grandstand. It was a huge scene, and we were very loud. Eventually, my dad just stormed out and said, “I’m leaving, you can take the train home.” So, I stayed at the game by myself, watched the Rangers lose 7-0 and then took the train home once it ended. Mom picked me up at the station. We all laugh about it now, but it was heated.
Father’s Day just passed, and I think that’s why I chose to write about faj, as I call him – If you haven’t seen Austin Powers: Goldmemeber, you won’t get that reference, sorry. He really has made a huge impact in my life, and I will forever be grateful for everything he has done for the CF community, we really have come a long way. This week coming up is probably one of my favorite weeks of the year. We have several fundraisers going on that I get to go to with him. We have an event in Kentucky, Cincinnati, two in New York and one in New England. It’s going to be a crazy week, but I get to spend it with my dad.
Category:general -- posted at: 1:13 PM
Thu, 12 June 2014
My mom is really the unsung hero when it comes to the invaluable support I have gotten from my family throughout my fight with cystic fibrosis. Whereas my dad gets a ton of the credit (rightfully so) in the public eye for bringing a ton of awareness to the disease, my mom has been, and still is the backbone for the hands-on fight at home.
When I was younger, she essentially did all the dirty work. Everyday she would clean all the necessary equipment for my treatments, order new medications from the pharmacy and prepare them for use. It may not seem like a lot, but the sterilization process is no joke. As a kid in grade school, I probably would have managed to burn the house down while trying to complete step one of the whole ordeal, boiling the water. I’ve since gotten past that speed bump, thanks largely to my mom, but the task has certainly gotten heavier.
Since new nebulized medications have been introduced to patients, it means a few things have happened. First, we saw improved lung function and quality of life, but second we saw more time spent doing the actual treatments, which, also meant more equipment to sterilize. What was once a 5 to 10 minute process, it had become a 15 to 20 minute process, once or twice per day by the time I was 14 years old.
For many CF patients, including myself, sterilization is probably the single most challenging part of dealing with the day-to-day maintenance of the disease. Think about it, no one likes doing the dishes after dinner, just ask any of my college roommates. The sterilization process is just another added chore.
By the time I was well into high school, my mom really drilled into me how to sterilize my “nebs” as we call them. She was preparing me to be more independent, and then ultimately the task of taking care of myself during college and beyond. If you were to ask her today if I do a good job in that department, she would probably tell you that I still don’t do it right, but we can agree to disagree there.
As I got older, though, there came other lessons. She taught me how to use a syringe properly, and safely for that matter. I cannot tell you how many times I have accidentally stuck myself while trying to reconstitute medicines – it really hurts too. She taught me how to deal with pharmacies and insurance companies whenever there seems to be an issue, and there will almost always be an issue when it comes to that stuff. She also taught me how to take care of an IV or PICC line properly with the help of homecare nurses. Whenever I was home on IV’s when I was younger, and still today as a matter of fact, my mom would always volunteer to do the early morning IV shift.
IV meds, depending on the drug, generally have to be administered every 6 or 8 hours, so when I am not in the hospital with an overnight nurse to do the job, someone has to start and finish the IV med at 4 or 5AM every morning for two weeks, and since IV meds are required when my health is sort of in shambles, waking up in the middle of the night is not the easiest thing in the world. Although, I will tell anyone that I have no problem getting myself up at the crack of dawn to get my meds done, my mom almost always has had different plans for me, and those plans have always involved her getting up and doing them. Instead of the tooth fairy, I was getting visits from my mom in the middle of the night to run a toxic antibiotic designed to kill the deadly bacteria in my lungs. Nice analogy, right?
Mom still holds my hand when I have to get a shot, my blood drawn or an IV inserted because let me tell you, I am still terrified. I can act all big and tough around just about anything except the little 2-inch butterfly needle the doctor uses to draw blood.
During my time in college, whenever my mom would come up to visit me, her routine was the exact same every time. Without fail, should would start boiling water to clean my nebs for that particular day, then she would make my bed, which in all honesty probably hadn’t been made for weeks (I’m just using averages here), then after that she would use the boiled water and complete the neb sterilization. Every single time she came for a visit, for all four years of college, that was the routine, crazy.
Beyond teaching me how to deal with all of the manual maintenance and labor involved with the disease, the most important thing my mom has taught me up until this point is probably that no matter how bad things get, they will always get better. She never gets angry with me when I get sick, but rather she likes to know if I think I am sick, because to her that is the most important part of caring for the disease. If I am able to be honest with myself and know when an infection is brewing, or if it is time to see the doctor, or if maybe I should take it easy for a few days, then that is how I am able to get on top of the disease. Unfortunately, there is a very fine line between acting tough like nothing can stop me, and getting very, very sick. There have been times when there was literally nothing I could do to stop the impending hospital stay or serious infection, these things just happen with CF, and my parents understand that, they just want to jump on it when moments like that do happen. I do give a lot of credit to my mom, though, for teaching me how to be honest with myself. At a very young age, I had to learn how to really understand my body. I wasn’t able to have the feeling of immortality that most little kids have, which isn’t a bad thing, I just had to mature faster. My mom showed me the door to maturity, and I had to walk through it.
Mom will always be an inspiration to me, even though we definitely do butt heads at times, like when it comes to my sterilization skills or my reckless abandon as a 13-year-old hockey player trying to hit the much bigger kids, but she will always smile and agree with me – after all, I am her baby boy.
No one prepared her for parenting a son with cystic fibrosis, but she has definitely mastered it. Honestly, it really doesn’t even seem that difficult to either of us when we are battling the disease, it just seems like another day in our lives.
She makes my fight to stay alive a little easier every single day.
Category:general -- posted at: 3:31 PM
Thu, 5 June 2014
So, before we get going, this is really my first attempt at a blog… here we go.
It’s no secret that I have cystic fibrosis, it shouldn’t be. It is apart of me, but it doesn’t define who I am. I never let my disease dictate my life. I have so much more to live for.
I have to say, my life has been quite the ride. Although, ride probably isn’t the best word to use when it comes to talking or writing about cystic fibrosis, it sure has felt like one. I have had plenty of high moments, but, unfortunately, there have been quite a few low moments as well. There have been memories made and a few experiences I have had to miss out on. There are times when I am perfectly fine and fully functional, but there are also episodes when I am hunched over coughing up blood. My life can be pretty graphic at times; through only 23 years so far I have seen quite a few things people my age shouldn’t have to see.
I want to use this blog to share some of my experiences so that hopefully when you, whoever you are, read this you can see the world as I see it. You can appreciate life as a whole. I want you to laugh and have fun while you read, I do not want you to feel sorry for me, or feel like the world is some cruel unfair place. The truth of the matter is that I was dealt a certain hand of cards, and I am making the best of it.
If I held a grudge for the fact that I was born with cystic fibrosis, I don’t think I would get anywhere in life. It would be a waste of time. It wasn’t bad luck, I wasn’t cursed, it just happened. It has been a privilege to meet other CF patients who handle the disease so well. Their strength in dealing with day-to-day life is truly inspirational. I don’t think I would have had the chance to meet as many amazing as I have if I was born without CF. I hope other patients who read this can somehow use some of my experiences, both good and bad, to enhance their own lives.
The bottom line is that my family, my friends and I have all taken the disease head on. I can promise you that I will never quit. Things have looked pretty bleak at times, but I’ve bounced back, I always have and I always will continue to do so. It is amazing how far we have come since I was diagnosed in 1993. I, along with every other CF patient worldwide, have benefited directly from the heightened awareness around the disease. It is pretty rare that I meet someone now who has no idea what cystic fibrosis is, and I think that is a major reason many of us continue to live our lives to the fullest.
There is no reason, in my mind, this disease should be the end of the world for people stricken with it. CF is just a challenge that I, along with however many other patients, have to overcome. It is not impossible to win this fight, nothing is.
Category:general -- posted at: 8:57 PM