**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.
Take it, or leave it, these are my answers to a few of the questions I have gotten since I added the “Ask Gunnar” feature at [email protected]
Before we get going here, let it be known that this is my first attempt at answering questions in this kind of setting. So, if I suck at it, this will also be my last attempt at it for a while before I can rebuild the courage to try again. It is also VERY important to keep in mind that I am in no way a medical or scientific expert meaning that this cannot be considered medical advice. Unfortunately, I am not a doctor. You can just ask my senior year astronomy professor from BC about my scientific expertise, or I guess, lack there of. Also, my last disclaimer: let’s not forget that I am only 23 years old, and well, to be honest a large portion of my motivation and concern that I have in my life revolves around my ability to pick up chicks at a bar, so with that being said, let’s answer some questions.
Question from a “germaphobe” mom in New Jersey who has an 8 year old with CF:
“[do you have any]advice for parents of younger kids with CF, what would it be? Is there something that your parents did that just really affected you as a kid, that you wish they didn’t do? I would say that we hide our anxiety somewhat well from him, but sometimes it’s impossible to do. I know he feels different sometimes, but I tell him that “everyone has their own something, and we just have to do what we need to do for now.”
I really like what you tell your son, because it’s true, we do all have something, and in your case (and his) that something is CF. He can never forget that. My dad, really both my parents, always made a conscious effort of trying to share the disease with me when I was younger. They wanted to make me feel like I was never alone. Whether that meant sitting and watching cartoons with me while I was doing my treatments or making sure I felt safe in the hospital, they were always with me.
I also think it’s important to make sure CF doesn’t entirely define his life. I largely credit the way I look at life and how well I am doing to my parents. They let me play sports, have sleepovers with my classmates when I was younger and really do anything a normal kid would do. Well, I guess my mom wasn’t too happy about me playing football because she was worried her little baby would get hurt, but I won that battle. On the flip side, though, they also drilled a sense of responsibility into me. When I was younger, I was allowed to do all these great things only after I got all of my treatments done. It was sort of like a task and reward system. My mom always tells the story that if I wasn’t willing to do treatments at a given time, Santa was only a call away or Tigger (yes the cat from Winnie the Pooh) would be very mad at me.
Basically, what I am trying to say is that I don’t think you should restrain your child at all. He needs to do what he likes to do. It will help him grow into a fine young man, someone who lives a normal life despite having CF, at the same time though, there is a very fine balance that you and your husband will need to find for him. How can he maintain his responsibilities? For me, at a young age, it was thinking that CF was like a game – a game that I wanted to win.
As far as your germaphobe fear, I am totally a germaphobe too. Hand sanitizer is my best friend – it should be your friend too.
Here’s a question from Uncle Jonnie:
“…My best friend has two daughters who are afflicted with CF. They are like my daughters and I have referred to them as my nieces since they were toddlers. They have called me “Uncle Johnnie” since then…My question is this, how can I be a better influence on [my teenage “niece”]? How do I convince her that she can have the life of a teenager and still treat her CF?
Ah, teenage years, the glory days. If I could go back, I totally would. I felt like my life in high school was right out of the movie American Pie. I always liked to remind myself that I played quarterback, had long hair, had a hot girlfriend and drove a cool car. I definitely peaked in high school. Take it from me, though, CF patients can 100% have a normal life in high school. It is important for her to know that she can ONLY have a normal life if she takes care of herself, though. I definitely struggled with that at times, but I think I quickly learned that I wasn’t going to be living a normal life if I was constantly missing football practice because I was sick. I think you, as an uncle, need to impress upon her that she can totally live a normal life if she wants to earn it. She can have a million friends and deal with all the teenage drama that girls deal with (I have a sister, I totally get it). Unfortunately CF is a burden, but her loved ones around her are there to help. No one is going to be a perfect patient, believe me, I am certainly not a perfect patient, but I understand the difference between being healthy and being sick. Now with that being said, no teenage wants to actively seek help for anything, or at least, I never wanted to actively seek help for anything when I was 16. I think you should encourage her to accept her disease, maybe even tell her reach out to other people with CF. I had (and still do to an extent) a relationship with a few other patients back in my high school years through Facebook. They told me all about their good and bad days. That definitely inspired me to focus on my good days, but learn from the bad. I think repetitive positive influence, maybe even some war stories from your high school days and a family viewing of American Pie might help. Well, maybe not the American Pie thing, but the other two for sure. Let her know a normal life is there, it’s just waiting for her to seize it.
This question comes from Mike in Newton, Mass:
“Gunnar, great stuff you’ve got going here, but I’ve got a question. If you had to choose hockey or football to be a pro in, which would you choose and why?”
Well, this is different, but thanks for the question. I would choose hockey. Now, I know you were a goalie back in the day, Mike, but I have to tell you goal scorers do get all the girls, or, well, that’s what I am led to believe after watching Youngblood. There’s nothing like shooting and scoring top shelf where mama keeps the thin mints. Bar-down, hands up, celly into the night. It would be pretty cool to play for the Rangers, lift the Stanley Cup and be loved by New York City. The Bruins suck, by the way.
The last question comes from a 19 year-old college student with CF:
“…You see, my freshman year of college, last year, I got sick, like really sick. I stopped taking care of myself because I was just so sick of doing the same thing everyday and I guess in some way it was my teenage rebellion coming to surface… The first month of school I was hospitalized in RI for double pneumonia, blood infections, lung infection, and even the commom cold. You name it, I probably had it. I was even on oxygen. Gross…Apparently I was gray! Anyways, It was just the sickest year of my life. But that wasn’t even the kick in the pants I needed to get back on track with my treatments. So, I guess what I’m asking is, how do you do it? Treatments day in and day out? I’ve tried so much and so hard to get a routine but it’s like I have this mental block that prevents me from taking care of myself.”
Believe me, you are not alone in dealing with the tough transition from high school to college inside the CF world. I was right there with you. Towards the end of my freshman year, I actually had to cut out a few weeks early and get myself back on the saddle. Here’s the deal, though, you have to ask yourself: do you want to enjoy college? If the answer is yes, you MUST own your disease (see what I did there, I used the title of the blog in one of the posts). There are a few ways to help you do that.
The best piece of advice that I ever got before going away to college actually came from another CF patient who had just graduated college. She told me that NO MATTER WHAT I had to complete my daily treatments, regardless of whatever I would be doing. If I wanted to enjoy college, I had to do my treatments. She made me promise her I would listen. I didn’t really think anything of it in the moment, but now I totally get it. She told me that it was the first thing I needed to do when I woke up, whether it was 6:00am or 2:00pm, because let’s be honest, not all college kids are waking up before noon. She didn’t stop there, though, she went on to say that I 100% need to do my night time session as well. I agree with her. I made a point of doing my treatments before I ever went out with my friends at night or before I went to bed. I knew that if I was going to be out late, there was no chance I would do them after getting back to the dorm. My friends understood that too. They were just as helpful. They would make me feel comfortable spending a little extra time in the room before we went out. There was never a rush, because frankly, they never wanted me to rush through them. Now with that being said, if I felt like I needed to throw the vest on for an extra 20 minutes after getting home from a bar at 2:00am, then I did the vest for an extra 20 minutes. Honestly, there’s so much free time in college, there’s no reason to not do your treatments. For us, we would kill time by playing Halo or NHL 13 on Xbox. You can only play so many rounds of Halo before it gets boring. Oddly enough, treatments helped fill some of the time.
Here’s my other little trick. Set attainable goals for yourself. Whether those goals have to do with your PFT’s or day-to-day life. If you set goals that you can achieve, you will feel an overwhelming sense of pride. For me, every night before I go to bed regardless of what I did that day or how I am feeling, I bang out 100 pushups, 200 sit-ups and 200 flutter kicks. I know that’s not a lot, but it’s still something, and when I finish it I still feel like I accomplished something. It gets me into a better mindset, and it sounds like that’s what you need. You just need to get your mind focused on the task at hand. I wish I was back doin