**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.