**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.
All right, so here we go with the second round of “Ask Gunnar.” We are going to stick with that name until I can figure out something a little better – my family friendly creativity only goes so far at the moment. Remember, you can always ask a question (about CF or anything for that matter) by sending an email to [email protected]
To be completely honest, this has probably been my favorite part of the blog so far. I don’t think I ever imagined I would have nearly this many readers, so a big shout out to all of you for taking a few minutes out of your day to read my pretty relaxed take on the English language.
Oh, and as always, remember I’m not a doctor, so anything I say here is merely advice, no more no less. Don’t go out there saying I’m doing something just because Gunnar does. I promise you, I am not that cool to be a trendsetter, and for the record, I got a C- in one of my college science classes. It was about Space, not about the human body. I’m not sure I could even spell biology correctly without spellcheck. (For the record, I received my A’s in other classes.) Also keep in mind that I sometimes eat ice cream for breakfast – for some reason that seems like an important side note here.
Our first question comes from Tony who has a four year old with CF:
“…I was always kind of curious if I should hold my son back on any specific sports or just let him go through them like I normally would if he didn’t have CF. I am planning on getting him involved in anything he wants but wanted to see if you had any recommendations on what you experienced growing up…”
There’s no reason to hold him back! I had a little taste of everything growing up. My parents threw me on skates at age 6 when they saw that I was in love with the New York Rangers. I also played soccer, little league baseball and just about everything in between like every 9 year old. By the time I was older I was involved in some pretty violent sports – football, lacrosse and hockey. Sure, my mom didn’t love that I wanted to play football when I signed up just before my freshman year of high school, but I can tell you that some of my football memories are by far some of the best memories I have.
Isn’t part of growing up all about learning that you can get back up after you scrape your knee on the concrete? I broke my wrist in sixth grade playing hockey with older and faster kids. I got crushed coming across center ice with my head down. From that point on, I learned to skate with my head up. Athletics are incredibly important in a kid’s development – let him play whatever he wants!
The next question comes from CF mom Renee who is about to send her son off to college
“Can you please give us your advice on…things that we need to know as [my son gets ready to go] to college. For example, how can you clean and sterilize your nebulizer mouthpiece/equipment when living in a dormitory…honestly, just any advice, information, etc., you can provide to us to prepare for this transition would be greatly appreciated”
I wish I were preparing to go to college. That sounds fun. The best source of information is probably this CF podcast I did my sophomore year of school (https://www.youtube.com/watch?v=OA27rZokRno). It seems like that was forever ago – I look really young there, wow. Hair looks good, though.
Anyways, there are a few major points that I should probably make. The first is obviously the question of the roommate. I was lucky enough to be going to Boston College along with one of my best friends from high school, David (the one buried in the sand last blog post), so that transition was pretty easy for me. He knew what I was dealing with, maybe not the extent of it, but he was right there with me along the way. I still remember the first time I did the vest and my treatments in front of all my new friends the first day of college. I decided to just jump out and make it public knowledge. One of the kids in the room asked if I was getting high and if he could have a hit. My roommate just laughed, and I said, “No, you cannot have a hit.” Honestly, that will probably be the biggest test, or challenge, for him – deciding how open he wants to be about his CF. My advice is to go for it, CF is not something that should be a secret.
When it comes to material advice or day-to-day living, I think the most important thing is to make an attempt as a parent to make sure he has everything to keep the place clean. I cannot tell you how many bottles of Clorox wipes or hand sanitizer we had. Unless he’s going to one of those resort-style universities like Highpoint, Pepperdine or something like that, the dorm is going to be a mess, there’s no way around it. You just have to do your best to give him what he needs to make it happen. It’s going to be up to your son to figure it out – that is what college is for.
As for cleaning the nebs, I just used the electronic kettle, bottles of rubbing alcohol, dish washing soap and the newborn baby bath-thing that I’ve talk about in my two prior posts. It’s pretty easy. You will see what that all looks like in the video link posted above.
The next question comes from Rachel:
“When do you wear a [surgical] mask? And how often do you wear a mask?”
This question is very important. I know in your email to me, you said your doctor told you to use your best judgment, and I totally agree with that. As far as what I do with the mask, it sort of depends. I always wear one if I am on public transportation, ESPECIALLY DURING FLU SEASON. The mask really serves two purposes. It serves as a first layer of protection, and it also let’s people know that you want them to stay away, well reasonable people to stay away. Some people are just idiots and have no compassion for anyone else, you should just stay away from them as a general rule.
You definitely have to wear the mask on planes, subways, busses and things like that. Also in the hospital, that is a must. You mentioned you are a physical therapist in your email, so I would probably wear it around sick clients too, or just see if you can stay away from sick clients all together – I’m not sure how that works, or if it’s even an option. You have to use your discretion if you are in a crowded place. I try to stay out of crowds as best I can – you won’t find me hanging out in Times Square on New Years Eve anytime soon for that reason. You don’t need to wear one if you go to a concert or something like that – you’re allowed to live a little. You also asked if I wear one if there is a high pollen count, the answer is no. I am more concerned with protection against viruses, not the elements. I am not sure if that would even work, maybe?
I wear 3M masks; they actually have a filter in them that lasts a few hours. You can check out their website. The normal surgical masks you get at CVS aren’t too helpful, those are more for letting people know to stay away rather than protection.
The last question for this post comes from fellow BC alum Caitlin, who graduated in ’06 and has CF.
“I am still undecided if I am going [to get a g-tube]…I am not sure [how the procedure will go], did you have sedation during the placement?”
I always love to hear from fellow Eagles. Who knew so many alums also have CF. The surgery for the G-tube was not the most amazing experience of my life. It was pretty quick, but definitely a process. There was an anesthesiologist in the room and I was totally sedated. In fact, I could not even imagine what that would have been like without sedation. I’m not totally familiar with how the surgery is typically done, but for me, they did it via endoscopy, then I assume they just cut me open and stuck the damn thing in. One minute I was trying to make the case to the doctor why American soldiers should be granted the ability to buy alcohol before they turn 21, then the next thing I knew, I was in the recovery room feeling like Snoop Dogg.
I will be totally honest here, too. As much as I love the G-tube and think it’s really an amazing device, there was a considerable amount of pain for a few weeks after the procedure was done. The recovery time was a pain in the ass. It hurt like hell every time I coughed, laughed, sneezed or tried to move from the sitting position to standing. God, sneezing was the worst, so if you have allergies, I would consider getting it done like now, not in the middle of April or May. I know you said you would prefer not to be sedated, but that’s really a question for your doctor, I only know how things went for me. I also hate needles and like all that stuff, so that’s probably important for me to note too.
My reading list since the beginning of February
The Energy Bus – Jon Gordon
Killing Kennedy – Bill O’Reilly and Martin Dugard
Killing Lincoln – Bill O’Reilly and Martin Dugard
The Reaper – Nicholas Irving and Gary Brozek