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Syndication


I got a pretty interesting email (not saying that every email I get isn’t interesting!!) from Nicole, 28 with CF, the other day. It was somewhat of a response to my last Ask Gunnar blog (http://gunnaresiason.com/ask-gunnar-5), and specifically the question I received about dating. The gist of her email was that after a bad break up she entered the world of online dating. On her profile, she decided to “lay it all out there” as she says. She let all potential suitors know about her CF and everything that she deals with on a daily basis. She noted that over time her ex-boyfriend had a really tough time dealing with her daily medical needs and treatments, so this approach was a way of sorting through that. Nicole said that she received all kinds of matches and messages that were both positive and negative until one day she found someone who she thought was perfect. They now live together and will be getting married next year. Nicole, I wish you all the luck in the world with your next step in life!

Before we go on, I really want to point out that I’m not over here frantically looking for a girlfriend or a future Mrs. Esiason. My time will come – I realize that. I’m just chilling.

So, this got me to thinking – what if Nicole’s method really is the best way to go about finding “the one.” I cranked up the old Tinder app since I love doing funny and outside-of-the-box things at the expense of myself for blog content. After a year of running this thing, you would not believe the ideas that cross my mind for UNIQUE content.

For the past week or so, I decided to test this “method” with Tinder and Bumble. I wanted to see how many girls would actually “match” and then have a conversation with me, given the public knowledge that I have CF. I assume that 99% of you know what Tinder is, but for the 1% of you that have been living under a rock and have no clue what this thing is, I am going to give you a quick rundown, because I’m super reader friendly.

Bumble and Tinder are very similar and are designed for singles (or I guess people who aren’t single and are the kind of assholes who are into that type of thing) to meet other people and make the fireworks happen. You are given space to upload five or six pictures and then enter a little bio about yourself if you so choose. Each app uses your phone’s location and then connects you with nearby people who have also downloaded either app. You then “swipe” right on someone’s profile if you think the other person’s pictures are attractive or I guess if the bio, composed of less than 300 characters, is witty. If you don’t think either of the above is true, you swipe left, for a “no,” and move on to the next person. There’s no limit on the number of people you can view or swipe in either direction.

Basically this is the most superficial thing in the world.

The catch is that neither you nor the other person knows if anyone has swiped right or left unless there is a match, meaning both people have “liked” each other. Tinder has been around since I was in college, while Bumble is relatively new (there are a bunch of other apps that all do essentially the same thing as well). The difference between the two is that if you are using Bumble the girl must initiate a conversation when there’s a match, whereas anyone can talk first with Tinder. I can honestly say that I would have never thought I’d find myself writing out how to use these things, but, hey, here I am.

Let me first answer a few questions that I know every single one of you undoubtedly has:

1. No, I do not think I will ever find true love on Tinder, I think it’s dumb.

2. Yes, I think these things are very creepy since you are given no information about the other person except for age, college, place of work, general location, a few pictures and a brief bio.

3. Yes, I judge myself for having used these things.

4. Yes, I have been on a Tinder date, but not in a few years. Everyone used it in college get over it.

5. Yes, people shockingly use these things in real life because they have forgotten how to talk to someone at a bar, concert, etc…

6. Yes, it’s a fantastic way to kill time.

To put things a little more into perspective – in an attempt to find out how stupid people really are, I once bet a friend of mine (we’ll call him swipe-right-Craig) five whole dollars, yes American dollars, that I could get a girl’s number off Tinder using only Blink-182 song lyrics. It was very reassuring to learn that not everyone in the New York metro area is actually that dumb. With that being said, you would be surprised by how many people were unknowingly invested in a conversation with me while I was spitting out lyrics from All The Small Things. It’s amazing how bored you can get at a hockey rink in between practices to think of doing something that dumb. Also, to answer your question that you undoubtedly have here: No, I had zero intention of carrying on any sort of conversation after scoring a number using lyrics… come on. Either way, the people who actually responded to me during that little ploy are a pretty good representation of the kind of people using Tinder. “That’s all I have to say about that.”

As for my little CF experiment… I had never before in my bio included that I have CF. This probably goes back to the point that I firmly believe people see me in a way beyond that of someone with CF, but as Nicole pointed out in her email, and as I have experienced, some people just can’t handle it, which in fairness is understandable – some people just suck.

When it comes to the dating apps, I’m not going to sit here and tell you that I match every single girl out there because I have looks comparable to that of Brad Pitt, because it’s simply not sure. I may look like Brad Pitt (from a really particular angle), but I don’t match every soul out there. I have gotten my fair share of matches in the past, because, well obviously I had to try out my Blink-182 thing.

Last week, I first tried matching people without adding the fact that I had CF in my bio. That didn’t seem to be a problem. Either I was on a hot streak or people really loved my American flag hoodie in one of the pictures. A bunch of girls even messaged me (OMG I KNOW RIGHT?!) on Bumble, but since I wasn’t really into it for the true reason the app was developed, I just let the conversation die down, and that was it. No, I did not keep actual statistics on the number of people that I matched with during this part of the test. Like I’ve said a million times before, I am no scientist.

After a few days, I changed my bio to include the fact that I have “a genetic lung disease.” I wasn’t confident that the average person would know what CF is, so I wrote the next best thing with the intention of explain what CF is (like I would normally do) if the question came up in conversation after a match. I also added my least favorite fact in the whole world, the life expectancy from when I was born in 1991.

In 7 days, I have gotten 0 matches on Bumble and 2 on Tinder, but no conversation has come from either of the matches. I was even “unmatched” by one person (ouch).

Basically, there was enough of a difference to notice.

I AM NOT ASKING FOR A PITY PARTY. I was fairly confident that this would be the result before beginning since the apps are totally superficial. Also, with all due respect to the email I received, this really isn’t my thing, but it was still fun to do, and like I said anything could be blog content, if you put your mind to it.

You can draw whatever conclusion your heart desires, but first I have to concede that this was in no way, whatsoever, scientific or controlled. It was a random sample pool and well, maybe I was on a cold streak. There is nothing more random than the next profile that comes across Tinder.

It does go without saying that it could perhaps be worth considering the little addition to my bio was a turn-off for some people. There’s no way of knowing how many people actually read my bio, nor does it confirm that my bio was the reason people were left-swiping me.

It is an interesting thought. Are people afraid of something they perceive as an imperfection?

Forever swiping right…. As for me, I’ll meet Mrs. Esiason the old fashioned way, like by messaging her on Twitter or Instagram or something.

 

 

Remember, you can subscribe to my blog at the bottom of the page!

My reading list lately:

The Great Gatsby – F. Scott Fitzgerald

Tender is the Night – F. Scott Fitzgerald

All Quiet on the Western Front - Erich Maria Remarque    

Category:general -- posted at: 2:07 PM

This is the final episode of the Own Your Feeding Tube video podcast series. Here, you will see how the feeding tube has helped me immensely over the past 4 years. I have gained about 30 pounds, and to be honest with you, it has opened some doors that I hadn’t thought twice about prior to the feeding tube’s placement. The energy that the extra nutrition gives me is nothing short of remarkable. Between the feeding tube and normal eating, I try to take in about 5000 calories in a day – unlike Michael Phelps, I don’t have the appetite of a racehorse. I truly think my feeding tube has exceeded my expectations.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 1:20 PM

**Please be advised: do not consider anything in this blog official medical advice. Medical advice can only be given by a certified medical physician. The contributors on this blog may not be held responsible for any damage that may result from using the information in this blog without permission from a medical doctor.

I was overwhelmed with all the emails and notes I received after my last blog post about 15 things you shouldn’t say to someone with CF (http://gunnaresiason.com/dont-say-that-to-me).

It’s a pretty cool feeling to know that people are actually reading what I am putting out there, so thanks for all the feedback! The emails were all over the map. A lot of them were questions or comments about why I let people lick me from time to time. Others shared hated questions that I didn’t list in my last post. To be honest, as I was writing a few weeks ago, I quickly realized the list could go on forever, but forever is a long time, and I had a few others things I wanted to do that day – most of them didn’t include sitting in front of my computer for hours upon hours.

Also, real quick – A big shout out to my haters, specifically the ones who have a problem with my language choices. I’m 24 years old, I watch a lot of Family Guy and I like to tell it how it is. I’m going to say a bad word if I want to.

So, here we go, we’ll another installment Ask Gunnar (honestly, if you have a better idea for this portion of my blog, please let me know, I am looking for a better title). I have to cut into these emails somehow.

The First Question comes from Lindsay. She saw my blog about dating (http://gunnaresiason.com/will-you-go-out-with-me) – you know the one with the picture of Paris Hilton and me? Anyways, Lindsay, who is almost 30, is post double-lung transplant and asks “I am almost 30 and had a serious boyfriend for 5 years but he left this past winter. I want to get back into the dating world but am nervous too for many reasons. As you know most CF patients have a complicated medical background. I met my first boyfriend at a bar and we met for dinner a week later. Here I told him everything on the first date - the CF, the double lung transplant, the diabetes. He stayed around for 5 years until he said it was too much. I guess I am wondering what you and/or others think about when to tell someone you are dating or going to be dating about [your case with CF].

Well that guy sounds like a real asshole if you ask me. I think the major challenge that a lot of people with CF face is that finding a person in the significant other category can be a real challenge at times, because that person is going to have to be willing to make enormous sacrifices. It sounds like your ex-boyfriend was not that kind of guy. If you watch enough Dr. Phil (I don’t watch Dr. Phil at all), I am sure he will say that relationships are built around sacrifices and trust. Trusting someone is not easy and willing to make large changes in life may not be any easier. In my personal experience, I like to be upfront with the lucky girl that gets to go on a date with me. The nasty cough, tons of pills and appearance of my feeding tube are not the easiest things in the world to hide, so I just lay it all out there. I’ve seen people cower in fear when I’ve done that, but I have also seen people take a genuine interest in everything that goes on in my life. I think it’s really kind of a trial and error thing.

With that being said, your boy over here can’t seem to hang on to a winner for longer than a few months, so whatever I am doing may or may not be working. (We’re getting really deep here) I think the real challenge for me is that people kind of want to live the wild and crazy lifestyle of a New York City young-professional, or “Yo-Pro’s” as the kids say these days. Sadly, that’s just not in the cards for me. Finding a person who has the backbone to make significant scarifies and the emotional strength to deal with something as heavy as cystic fibrosis is not an easy task, but the only way to find out if that person is willing to try is by letting him, or her, in on the big secret.

The next question comes directly from my last blog post, specifically the point about vaccinations. Linda, who is the aunt of a 10 year old with CF, asks, “Why are [vaccinations] important to you?”

I can only answer this question from my own experiences and what I have learned through conversations with other people who have CF. I was vaccinated as an infant and get the flu shot every year. I also got the Bird Flu shot while I was in college. I ain’t got no time for the Bird Flu, and neither do you. Seriously, though, if you want to know what real misery is, ask someone with CF what it’s like to have the flu also on top of the hideousness that is cystic fibrosis. Fortunately, I have never gone down that path (knock on wood), but I know a few who have and I don’t think I have the words to describe what that seems like.

While I was in college, I made sure my roommates were vaccinated as well. For example, while the flu shot protected them, I also felt a sense of relief that we were somewhat protected from the virus making an unwanted entry into our room. I have enough on my plate with CF, I give my immune system more than it can handle on a daily basis. I realize there may be a lot of negative talk about vaccines out there, but what can I say? They seem to help me. Science.

The third question comes from Tom in Boston. Tom’s connection to CF stems from meeting me at BC club hockey tryouts. I came across the middle to get a pass with my head down and he dropped me pretty hard. Needless to say, we both got cut from the team. We’ve been friends ever since and now he dates one of my best friends…. Anyway, his email asks, “What are your thoughts on deflate gate?”

It’s a sad time to be a Boston sports fan, isn’t it? The glory years of all the championships are coming to an end. The Red Sox are in crisis-mode, the Bruins are not going to be any good this year and the Pats are in trouble without their main man, Tom Brady, for four games. (I know nothing about the Celtics, or the NBA for that matter, but since they don’t have LeBron, I am willing to say their chances are slim.) Boston has had 9 championships from 2000-2015, most of any sports market in the major professional sports. Business Insider and my ability to count to 9 are my sources here. Business Insider actually chooses to include MLS championships and claims that the LA area has won the most major sports championships (14) because of the Galaxy, but come on, let’s get real here. Soccer is about as American as Freedom Fries are European. Get out of here with that nonsense. Soccer was fun to play when we were all five years old and learning how to run, beyond that it’s about as entertaining as watching paint dry.

That’s neither here nor there. Do I think TB12 is probably, maybe, just a little bit, perhaps guilty as that big investigation points out? Yeah, he and the Patriots cheated. Rules are rules and he, along with some help, circumvented them. You can’t deflate balls. I don’t care how big (or little) you like your balls. All the balls need to be a certain size and his balls weren’t that size, so tough luck. In reality, though, his biggest crime is his ability to write really long Facebook posts. No one likes seeing a novel of a Facebook status about the state of the world. Learn from Tom Brady’s mistakes and don’t be one of those people who write convoluted Facebook statuses that take forever to read, for the love of God!!!!!

With that being said, do I think Deflate Gate will really prevent him from going down in the history books as the best quarterback who has ever played? No, I don’t think it will. He’s an awesome player, his wife is a babe and he wins championships. What a life he has. This was just a little hiccup and after his four-game suspension, hopefully all will be back to normal in Foxboro. Maybe then we can move past it just like Mark McGuire’s steroid use, or…..

The final question comes from Joey and Jessica, the parents of an 8-year-old boy with CF who is starting up tackle football in the fall. They ask, “What recommendations or suggestions do you have?  We are concerned about germs from the mouthpiece.”

Well first off, awesome job by you guys for letting him get involved in sports at a young age, there’s nothing better for a young kid with CF than playing sports. Get those lungs pumping.

As for any recommendations I have, well let’s tackle that question about the mouthpiece first. Wash and rinse that thing every day. Just stick it in a little cup of Listerine or wash it with the rest of his Neb-T’s, that’s what I used to do. You should also throw his practice uniform in the laundry after practice as well. Really, just do your best to keep everything clean. There is an antimicrobial spray for pads that you can buy. I recently put that stuff on all my hockey gear. Who knows if it works, but I did it anyways. A Google search will yield an answer for you there.

You also have to make sure you clean any cuts he may get. Those don’t need to get infected, but beyond that just make sure he’s having fun and he’s committed to the team. Make him carry his own equipment to and from practice. That will pay dividends in the long run. I hated seeing my little hockey players this past winter walk into practice only to be followed by their parents carrying the big hockey bag. That will help teach discipline and respect for the sport. Enjoy the season, and good luck.

 

 

My top ten favorite movies of all time in no particular order:

Top Gun ------- definitely my favorite by far

Saving Private Ryan

Braveheart

Old School

Zoolander

Miracle

That Awkward Moment

Friday Night Lights

All 6 installments of Star Wars

American Sniper

Ted (bonus)*** 

Category:general -- posted at: 3:24 PM

The fourth episode of the Own Your Feeding Tube video podcast series discusses some of the social questions that tube feeders, or potential tube feeders, may have when it comes to a new feeding tube. Obviously, it’s a pretty noticeable device. I think the social hurdle was really the biggest one that I had to overcome. With that being said, once I realized the benefits of the feeding tube, especially in my life, it was an easy hurdle to get passed. Here, the message is that I really want you to own it. What is it? The feeding tube. If the feeding helping make your life easier, then don’t worry about what it looks like. You never know where it will lead you.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 6:32 PM

This blog post touches on the invisible disease side of things. I know I went pretty deeply into that with my little story about almost getting tazed on an airplane ride from Boston to New York (http://gunnaresiason.com/i-hate-the-color-purple), but this is a little bit of a different take on the subject.

I recently saw an article online (http://www.cosmopolitan.com/sex-love/advice/a7212/things-not-to-say-to-a-non-drinker/) about a few things you should never say to some who doesn’t care for drinking. For the record, I don’t actually read Cosmopolitan, but Blake Lively is super hot and I think that picture of her is why I found myself on the website. I will say, though, it’s amazing what you find yourself clicking on when you go through your twitter feed (follow me @G17Esiason BY THE WAY). Either way, I thought it was kind of witty and gave me a good laugh, but more importantly, the article made a pretty good point – there are a bunch of things that are off limits when it comes to talking to someone who chooses not to drink.

I want to write about a few things you probably shouldn’t say to someone with CF, unless of course you are looking for a fight. Don’t fight anyone. That’s dumb.

As a side note here, I am speaking to pretty specific “you.” Personally, I love when people ask me about my disease, because I think some people are actually looking for legitimate answers. I am obviously pretty comfortable talking about my little health issue, but really, conversation about CF gives me a chance to educate anyone asking about it, and beyond that, it only furthers awareness for the disease. On the other hand, though, I don’t love when people make stupid little remarks behind my back. The kind of person that casually knows me, but doesn’t quite have a full understanding of what I go through on a daily basis and to be completely honest, the kind of person who doesn’t really care. From my little airplane incident, I think you should be able to tell that I can flip the switch and go into Hulk-mode if needed. So here we go, 15 things you probably shouldn’t say to someone with CF… if you don’t really know what you’re talking about.

1. Why the hell does your breath stink? Come on, man. Do you actually think the sh*t in my lungs doesn’t have a smell. Guess what – I can taste it too and it doesn’t quite have the same flavor as mint-chip ice cream. I promise you I brushed my teeth today. I hate going to the dentist, so I brush those bad boys 3 times a day, and the smell still won’t go away.

2. You’re looking a little skinny these days, huh? Yes, you’re right, thank you captain obvious. That little mushy thing inside my body called a pancreas doesn’t work so well all the time. Food goes right through me sometimes. Yup, there’s a good mental picture for you.

3. You hardly ate anything! I know. I know. Listen, I don’t want to be wasteful. I try my hardest not to be, but nausea can come on real fast. All the bacteria in the lungs – totally not meant to go into the stomach. You can do the math here.

4. You have alien fingers and toes! Actually, I kind of think this one is a sort of funny and I totally embrace it, but it is a sensitive point for some people, which I completely understand. I love my little (they are actually pretty big. You know what they say about big hands?) alien fingers. I also have the world’s biggest toes. If you tell me that you know someone with toes bigger than mine, then I call you a liar. Science calls my alien fingers and toes “clubbing.” That happens when a limited amount of oxygen gets to the extremities, and as a result my fingers and toes are curvy. Science. Head, shoulders, knees and toes, knees and toes.

5. Did you just destroy that bathroom? LOL. I may have. Remember that point about the pancreas. Well, here’s the deal, fat sort of smells, and when it doesn’t get digested properly and goes right through me, things like that happen.

6. Would you cover your mouth when you cough, please? I’m trying my hardest, people! You try making a move to your mouth 300 times in a single day. Oh, by the way, I promise you won’t get sick. In fact, I pinky swear.

7. Wow that sunburn, just wow. Yeah, I know I can feel it. You don’t have to tell me twice. Remember my summer tips from a few weeks ago (http://gunnaresiason.com/summer-tips)? Those antibiotics and the sun don’t mix. I sure as hell take enough of them.

8. The surgical mask on the subway, really? I don’t know how many times I have to write about this, but this little issue is really a never ending up hill battle. I mean, I’m not even going to link to the other stories in my blog about this, it’s mentioned in every freakin post. People are just so damn judgmental about surgical masks in public. The outcry is nearly as bad as the selfie stick phenomenon. Don’t use a selfie stick in public – don’t be that person. The flu and CF don’t mix. Hopefully the conversation about this ends here.

9. You want me to get vaccinated? I have never gotten the flu shot or any of those things. Get to the doctor and get your ass vaccinated. Since we are talking about the flu again, let’s just set the record straight – I don’t need the Measles either. I get poked about 9 million times a year, give or take – you can do it once for a vaccination. You aren’t bigger than the rest of the population; you’re actually helping other people out by getting it done. Don’t be selfish.

10. Are you really going to park in the handicapped spot? You know, there are people who are actually handicapped, right? You’re an asshole if you say this to me. Don’t be an asshole.

11. What happens if you don’t do your treatments or take all those pills? Are you serious? I, uh, die….

12. Do you still have that cold from [the last time I saw you]? Ugh, yes, I still have that cold. I’ve had it for 24 years.

13. You’re having a bowl of ice cream for breakfast? Yeah, it’s coffee ice cream, my favorite! You have coffee in the morning too, don’t you? See, we in the CF community actually need fatty foods, really just about whenever we can get them. What better than ice cream? SHOW ME A CHILD THAT DOESN’T LIKE ICE CREAM! Best childhood ever, right here. Can’t you tell? I’m so lovable and sweet. (For those of you keeping score at home, that was a pun – ice cream is sweet and everyone LOVES ice cream. Come on, you’re better than that)

14. Can I… like, lick you? Okay, this has actually happened to me, more than once oddly enough. While it may seem like a gross thing or something you may stumble upon after a weird Google search, but on the scale of grossness, it’s somewhere near the bottom. As soon as people put together the whole salt thing associated with the disease, it’s like people actually want to give it a try. They want to test it for themselves… or something along those lines, I’m not quite sure why. “Nah, you’re lying! You don’t have CF, your skin isn’t salty!!!!” But, like some of the other things in the list, this one can be a real knee slapper when I go along with it and someone actually ends up licking my arm to taste the salt. What’d you think, I was gunna let them lick my face or something – wrong website. Without fail, there is ALWAYS a “holy sh*t” moment when the person does realize that I do, in fact, taste salty. I’m best served medium-well… just for future reference.

15. How do you live like this? It’s everyday life, that’s how. There are different ways to handle some of these things. You can take the France approach and just let people roll right over you, or you can take the America path and unleash the fury. There are times when either option is acceptable, but personally I love the American way of answering some of these questions… it usually makes for a pretty good laugh in the end. Like Russell Crowe says in Gladiator, “Unleash hell.” Seriously, though, I think it’s important to be able to laugh at ourselves in some of these situations, because in the end, if we can’t laugh at ourselves when it comes to these idiotic things that we go through, than what the hell are we fighting for anyways?

 

 

 

 

Here’s my reading list lately!!

Band of Brothers – Stephen E. Ambrose

Killing Jesus – Bill O’Reilly and Martin Dugard

Black Hawk Down – Mark Bowden

Category:general -- posted at: 2:00 PM

In the third episode of the Own Your Feeding Tube video podcast series, you will see how I have been able to maintain my physically active lifestyle. Prior to getting my feeding tube placed, I had a fear that my life would change drastically. It did, but for the better. My health drastically improved, plus I saw my energy and activity level sky rocket. I was in the gym and on the ice only 6 weeks after surgery. While the feeding tube does require a little extra work outside of the realm of normal cystic fibrosis responsibilities, I am more than willing to give a little hard work for such incredible gains.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 3:59 PM

**Please be advised: do not consider anything in this blog official medical advice. Medical advice can only be given by a certified medical physician. The contributors on this blog may not be held responsible for any damage that may result from using the information in this blog without permission from a medical doctor.

It has been a little while since my last installment of “Ask Gunnar,” so I wanted to get ahead of the curve and answer some of these emails before they begin piling up on me. I want to thank everyone for seeking advice from me, a 24-year-old dude who barely passed art class in high school, then had an equally tough of a time with astronomy in college; you couldn’t have come to a better spot!

The first question comes from Shawn, the father of a 14-year-old with CF. “Throughout [my son’s] life we have provided him with information that we felt was appropriate for his age; however, he is gaining more knowledge, a lot which can be hard for a young kid. What advice can you offer and what can be helpful at this age?”

Shawn, I think this is a pretty tricky subject. It’s no secret that there is a very dark side to cystic fibrosis and a lot of that is available on the Internet. The Internet can be a scary place – specifically cystic fibrosis Facebook communities and groups. I do my best to stay away from these places as an unbelievable amount of negativity spreads from them. This is not to say that all of these groups and forums are bad, but some are, he will have to be careful. I have a pure hatred for Facebook because of that. Beyond that, a simple Google or Wikipedia search for “cystic fibrosis” will not lead to the most appealing web pages. Somewhere along the line during my high school years I decided I would do such a search. Next thing I knew, I was on WebMD diagnosing myself with 15 different illnesses.

That was a tough night. Unfortunately, as he grows older there will be moments in his life when he is going to be facing enormous challenges. We all handle them in our own ways, but it is your responsibility as a parent to prepare him as best you can for such a moment. I remember the first time I coughed up blood as a 15-year-old, it scared the sh*t out of me. I have since learned that 99% of the time it isn’t such a huge deal – it can and does happen. My biggest fear with that nowadays is how awful it tastes. Personally, I am at a stage in my life where I can be pretty candid with my parents about the realities of CF. It’s not like it is always a topic of conversation at the dinner table, but we all know the uphill battle we face. I think for an adolescent boy, there are certain subjects that are age appropriate conversations, for example the reproduction issue. That might be something that is a few years off and doesn’t need to be covered right this second. You will need to walk that very fine line with him about the realities of the disease. While some of those realities can be quite the burden, it is also beyond important to reassure him with hope. The cystic fibrosis community is on the verge of something great – something that will change his life and is going to be an incredible advance for his generation. He will need to learn how to balance his life, manage his time, continue to be an athlete and, above all, live a fulfilling life. It does not surprise me that many people with CF possess a level of courage that so many healthy people wish they could have. Your son will reflect that courage, and with it, he will be able to face anything that stands in his way.

The second question comes form Melissa, the mom of a 7-year-old little boy with CF. “My 7 year old son has CF and my question is how your parents handled overnight invites from friends. Did they allow you to go? Did they come over before bedtime to help you with your treatments? Were there any issues that came up in terms of that over the years?”

Well, I can tell you one thing – I survived four years at camp college (BC) and I think I turned out all right. I did not live inside a bubble. I was allowed to have sleepovers as a kid. In fact, every Friday night in 3rd or 4th grade (I think that was the timeframe), my buddy Jeremy and I would do overnights either at his house or mine. Admittedly, at first I was scared to leave home – I was a total momma’s boy (and still definitely am). Once I got over that fear, it was totally fine. Jeremy had a PlayStation, I only had Sega – I preferred his house by that point. I did my treatments and nebs at his house while we played video games or something. Keep in mind, these were the days before the Vest or Frequencer, so I would use my Flutter and everything was gravy. That little thing was much easier to travel with. Looking back, I can totally see how my parents probably definitely told his parents what treatments I needed to do and how I needed to do them. Remember, the only thing that makes fighting CF worthwhile is if he gets the chance to actually live his life.

The third question comes from Max. He has no ties to CF whatsoever, except for the fact that I reluctantly agreed to let him play on my intramural hockey team at BC. He asked me 6 million different times if he could try the Vest on because “it looked fun.” Max’s question is “What are you thoughts on Day-Light Savings?”

Thanks for the email, Max. Never change. It’s funny you bring that up because I do feel somewhat passionately about the subject. Why does Day-Light Savings even exist? Personally, I love the fall-back version of the day, while I hate the spring-forward variety when it comes to my sleep schedule. With that being said, when it comes to the actual hours of sunlight, I feel like the flip-flopper himself, John Kerry, and totally reverse my opinion on the matter. I would have to guess it greatly impacts farming communities because their days are based on solar-time. Is that right or am I just making that up? Let’s ask the Internet. Wikipedia says I’m right. We’ll go with it. Honestly, Max, since I am not running around with a pitchfork or attempting to turn a crop, I can’t say that my day is impacted very much by the change in sunlight hours. What I can tell you, however, is that for the two or three days immediately succeeding the bi-annual Day-Light Savings event, I can never seem to figure out what time it is. Between my phone, watch, microwave and car, they all seem to say something different.

The next question comes from David, the father to a 12-year-old son with CF. David asks, “We are looking to purchase a portable, battery operated, nebulizer for [our Make-A-Wish] trip and were wondering if you could recommend one! We saw your video with the portable vest and were amazed.”

There are several types of travel nebs on the market. I can’t say one is better than the next since I haven’t tried them all, but I have used PARI and Respironics travel nebs at different points in my life. They both had a car adapter and a battery operated function. The car adapter thing was a great time saver in high school and still is for long road trips or early mornings. Some people even make the case that travel nebs actually work faster than the home style. As for the “portable Vest” you saw me using, it is called the AffloVest. That thing is pretty cool. It’s really easy to use and the mobility is awesome. People have had different experiences with its efficiency, so I can only testify to my own use of it. It seems to get the job done when I am on the move. Keep in mind there may be insurance battles ahead of you as you are trying to get some of these things for your son. Your clinic’s social worker will be a great resource for that!

The final question for this post comes from Maria. She has a son with CF who is about to go off to college. She asks, “When you were 17, what would you say were the most important aspects of having CF that I can share with my son besides the normal day to day treatments? [sic] How was your health with CF at college? Any tips on staying healthy as a college freshman when you have CF? [A question about bacteria colonization and antibiotic use was also asked]”

First, let’s tackle the bacteria question. I am a patient who has been colonized with bacteria. This is not the time or place to share the names of my lovely friends living inside my lungs, but they are there taking this ride with me. So yes, I use inhaled antibiotics every day. They are great. They usually taste the worst.

When it comes to being a successful high school student headed off to college, I think I would tell your son to be as active as possible. High School, especially senior year and the summer following graduation, is a great time in any kid’s life. There are very few responsibilities for them and they get to learn how to interact with their peers in both negative and positive ways. It is a time to be “one of the boys.”

Your son should be transitioning to learn how to care for himself in every possible situation (cleaning nebs, accepting that he doesn’t feel well, learning how to stick to a routine, etc…) so that he is prepared for college life on his own. High school is very regimented. CF kids wake up, do treatments, take pills, eat breakfast, go to school where lunch is provided, play sports after school, come home, do homework, take evening pills, eat dinner, do treatments again, then go to sleep. College is not like that at all. He might have class for 3 hours in a given day. One class could be at 11:00a, the next at 3:00p, then finally 6:30p. When and where is he going to eat or do treatments? What is he going to do during those blocks of time between classes? Schoolwork? Okay. That lasted about a day for me at Boston College. I quickly found out that I wasn’t doing anything fun in the Library. My sister loves to tell people that I only went to the Library when a girl wanted me to go with her. I quickly became like every other student doing homework from 9:00p-1:00a (on a good day). Time management is going to be key. We all (like every college student ever) struggles with that at first. For example, what the hell was I doing my freshman year when we were snowed in for two days up in Boston? We found ways to keep ourselves occupied. We tied a dollar bill to a really thin string and tried to fool people into taking it before pulling it under a door. That lasted about 25 minutes and resulted in a great video. Then we watched a Mighty Ducks Marathon, then played hours of videos games. It got to the point where I found my roommate playing Guitar Hero at 7:00a while sitting 5 inches from the TV. It’s amazing what people do in college when they have time on their hands.

Keeping a routine becomes difficult, but that will be his biggest ally. Treatments immediately after waking up and doing them before going out at night will be the best way to fall into a routine and take care of himself. There is no way around it.

As for my health, well, college is disgusting, so I did the best I could do. I would be lying if I said I feel as great as I did when I was 18, but the experience of living with roommates and being away at school for 4 years is something I would never trade back, for anything.

Category:general -- posted at: 5:03 PM

The second episode of the Own Your Feeding Tube video podcast series will show you how I have had to make a few lifestyle changes after I had my feeding tube placed.

I agree, it can seem like a lot of work and even a little scary at first, but I can honestly tell you that living a full, healthy life with both CF and feeding tube can be done. Here, you will see what I have done to overcome any challenges that a feeding tube may present.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 1:47 PM

In the first episode of the Own Your Feeding Tube video podcast series, this “How-To” video will show how I am able to use my feeding tube in different situations. I cover two different types of “feeds,” bolus feeds and nocturnal pump feeds. Bolus feeds are quick and easy and can get me as much as 750 calories in just a few minutes. My nocturnal feeds typically run for about 7 hours and give me anywhere from 1500-2500 calories depending on how much formula I use.

I also discuss how the feeding tube system is undergoing a change to the ENfit connector system. The current ENfit transitional set has been introduced and has created many questions for tube feeders. In 2016, feeding tubes and their accompanying pieces will complete the total transition to the ENfit connector system, which is designed to improve patient safety. Hopefully this video can help answer some of those questions.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 2:06 PM

Well, it’s just about summertime, or at least I hope it is. I guess we can never be too sure. Anyways, I figured now is a better time than any to give you my 7 tips for a hot, hazy and humid summer with CF. Let’s get into it.

Vitamin D

Ah, vitamin D – the stuff that comes from the sun. It’s hard not to open this blog post without everyone’s favorite thing, the sun, so that’s exactly what I am going to do. Like Katy Perry once said, “Daisy dukes, bikinis on top / sun-kissed skin / so hot we’ll melt your popsicle!” getting tan is awesome, and as a dude, how could I not love the bikinis on top. BUT did you know that vitamin D is actually great for lung health? No, you didn’t know? Now you do. That’s right. Studies have shown (http://advances.nutrition.org/content/2/3/244.full) that vitamin D is a key ingredient in keeping the airbags healthy. I don’t want you to think that I’m telling to go out there and get crushed by the sun only to come back looking like Mr. Krabs from Spongebob. I am telling you to get outside and enjoy the fresh air. Remember it’s healthy to do so.

Sunscreen

Before we get ahead of ourselves here, REMEMBER TO USE SUNSCREEN. Melanoma is no laughing matter, and while we are at it, neither are sun burns or skin cancer. Sunscreen can literally be a lifesaver. Beyond that, have you ever noticed on the little antibiotic bottles that the red label warnings sometimes say “avoid sun exposure”? That warning isn’t a lie. I can recall a few times when I was younger that I fell victim to sun poisoning during a course of Cipro. Take it from me, sun poisoning is not fun. During football preseason my senior year of high school, I had it so bad, I basically peeled the skin off my entire nose. So, while I tell you that vitamin D is awesome and being in the sun is great for your lungs, you need to be smart about it.

Hydrating

For those of us with feeding tubes, there really isn’t any excuse here. Your feeding tube acts like a second mouth. Utilize it. I know Pedialyte tastes like garbage, so just dump it right down the feeding tube. You might as well add a little salt to it also – you aren’t going to taste it. For those of you who aren’t lucky enough to have a feeding tube, I guess there is a little bit more work involved in this one. Staying hydrated is incredibly important. For one, it’s essentially a root issue within cystic fibrosis. Our lungs aren’t hydrated properly, so the mucus gets harder to cough up, then it can get stuck and lead to infection. Secondly, we are salt deficient. Replace that stuff. Drink Gatorade, water, Vitamin Water, (or pedialyte if you can stomach it) whatever suits your personal needs (you can add a little salt too), get it done. Don’t get left out, sitting on the bench. This is something you can help control. Monitor your fluid intake, and remember, when in doubt on a hot day, just keep it going – drink! Make sure that pee stays clear. [Also – if you want to know more about how I keep myself hydrated check out my blog post from last year… http://gunnaresiason.com/quenching-a-thirst]

Crushing a few brews

Yeah, I’ll admit it – I’m a sucker for driving the truck out on the beach, lighting up a bonfire and hanging out for a couple hours. Nothing spells America quite like combining horsepower, nature and a good BBQ. Once the sun goes down and the temperature drops, though, it’s game on. Clean up, drive home, change clothes and head to the bar (designate a driver please, don’t be dumb). I realize I am totally contradicting myself with the “staying hydrated” tip, but whatever, it’s life sometimes you have to live it, just remember it’s important to be responsible. If it’s 105 degrees and painfully humid, maybe it’s not the best idea to be drinking, let alone to be outside. If you do choose to drink, however, make the right choice. I choose Budweiser. Not only is it the great American lager, it also has great calories. While the King of Beers may not be on par with the Silver Bullet, “great taste, less filling,” it certainly will help pack on the calories better than any beer I would drink. It’ll fill you up too (don’t funnel Budweiser, bad things will happen). When you wake up the next morning, revert back to the hydration tip. Remember to enjoy life. You’ll survive if you crush a few – I promise.

Pick and choose your battles

I have touched on this one a little throughout this post already, but let’s just remember, I am not Superman, and neither are you. If it is painfully hot, there is no shame in staying inside in the AC. The heat can be deadly especially for people with any chronic illness. You have to be smart about what you can expect of yourself on a super-hot day. This is especially true if you are on IV antibiotics or something that can lead to dehydration. There have been several summer BEF fundraisers in the past that I have chosen not to attend simply because of the heat. As the saying goes, I would rather live to fight another day. I understand, or at least I like to think that I understand, what I am dealing with. It is important to know how far to push yourself in several situations – the heat is not an exception.

Salt Air

I can’t say whether this one is true or not, but I like it, so I’m going to take the ball and run with it. As the story, or myth, or whatever you want to call it goes, the hypertonic saline treatment came from CF surfers in Australia. If that is actually true, that is freaking awesome. Why would they be in a position to discover it, or realize that surfing is helpful? The salt air. The salt air, much like HyperSal, moistens the mucus in our lungs triggering coughs.  Coughs help clear the mucus, destroy plugs and allow us to breathe easier, so get your a** down to the beach. I am not telling you to suddenly turn into SI swimsuit girl and professional surfer Alana Blanchard, but I am saying that I am a believer that this actually works. With that being said, if you do want to turn into her, go for it. For the record I do not surf. I am terrified of sharks. Seriously, though, I cannot be certain, but I do feel like I am a healthier person during the summer months. That could be a result of a million different things, but I like to think that the salty beach air helps. I hope it helps you too.

Have Fun

It’s corny, I know, but I am going to say it anyways. Remember, life isn’t all about work and stressing out over little things. You are bigger than your disease or whatever else you have going on in your life. You have the freedom to do whatever you want, as long as you take care of yourself. You make your own luck, just like you present yourself with your own new challenges and opportunities. Take a trip, make a few mistakes, create some memories – get yourself involved. There’s nothing worse than watching life go on without you. Make sure you get on board the train when it leaves.

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I am planning on writing another Ask Gunnar blog soon, but I want to keep it unique, so keep emailing those awesome questions, but please for the love of God, ask something new!!!! Take a look at our older Ask Gunnar blogs before you send some questions in. That email is GunnarsBlog@Esiason.org

Also! I have been working on some really great videos and podcasts, be on the lookout for those to drop intermittently along with my weekly blog posts.

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My reading list since March:

Friday Night Lights – H.G. Bissinger

Legend – Eric Blehm

Profiles In Courage – John F. Kennedy    

Category:general -- posted at: 2:13 PM

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