**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.
Here we are, back again for the third round of Ask Gunnar. I have gotten quite a few really good questions over the past couple weeks, so let’s just dive into it. Oh, and remember, I AM IN NO WAY A MEDICAL PROFESSIONAL, so this is just advice, no more, no less. Don’t do something stupid because you think I would do it. The funny thing is, I do, do a lot of stupid things. Ha ha I said dodo.
Our first question comes from the mom of a CF patient who is a freshman in college, but is having some trouble with the new environment. “[He was] put on disability status at school… [and has] become not only depressed, but very angry… Did you go through anything like this? What do you think would be helpful?”
This sounds like quite the tricky situation here. From your brief email, it sounds like he is having trouble accepting his cystic fibrosis, and that you have also tried the therapy route, but without much return. I think the key to success here is getting him to accept that there is an enormous challenge in front of him, but a challenge that he can overcome. It is definitely not something that can happen overnight. The million-dollar question is: how can you help him understand that? I can’t remember a specific time in my life when I rebelled against my CF, but I can think of a thousand different instances when I was frustrated beyond belief. My support system is always the most helpful thing for, but I definitely do need to get away by myself sometimes. I guess it is pretty easy to see when I am going through a tough time or am down on myself, because it seems like I always have a friend or family member right there to pick me back up. My biggest fear is that I will let down my friends and family when I get sick, but they are always there to reassure me that a lot of things that happen to me are not within my control. I am no stranger to getting sick, but it seems like whenever I do, I always get that same feeling of helplessness, I don’t know why, but I do. Like I said though, there’s always some right there to pick me up. They know how far to push me to help me get back on his feet. My friends and family have found the perfect balance between knowing when to be there with me or let me do my own thing. That’s what I think you need to do. I think you, the rest of your family and his friends need to figure out how to give him an incentive to getting better and how to push him in that direction. I know this is a cliché, but you won’t be able to walk him through the door to compliancy and accepting his disease, but you can show him how to get there.
This next question was probably one of the more blunt emails I have ever received. “How do you know what the right time to get a port is?”
That was literally the entire email. Straight to the point – got to love it.
The “port” is definitely a hot topic. I am no scientist, but this is really a question for your doctor. I will say, though, that I do not have a port. Fortunately, I do have good veins, so I don’t have any trouble getting PICC lines or IVs placed. My veins actually make up one of the few systems in my body that works correctly. I also would not be able to play hockey with a port, so no port for me anytime soon. With that being said, I do know quite a few people who do have a port and they love it. It sounds like it makes their lives a lot easier on the homecare front. They spend less time in the hospital, and they have much more flexibility when it comes to scheduling IV meds and typical day-to-day things that can be a challenge with a PICC line. To that point, I have friends who have become so good at accessing their own port that they can choose to go swimming or take a real shower mid IV course. That is definitely something I am envious of, but when it comes down to it, I am fine with not having a port myself.
The next question has to do with youth sports. To this point, I think this has been one of the more widely discussed topics. It comes from parents of an 11-year-old boy with CF. “Should we tell our son’s new [soccer] coaches and team about his CF. We don’t want them to think he is sick and can’t do as well as other because of CF.”
This is a pretty common question, but it is also a decision that you need to be comfortable with. My parents always told my coaches, teachers, etc… about my CF. I don’t think I received any less playing time as a result when I was a kid. In fact, I can remember a few times when I felt like I was playing way too much in a given hockey game or two. On the other side of things, though, I guess there is no telling how someone may react once given the new information about your son’s CF. I would hope that whoever is the youth soccer coach is the kind of person who wants all of his players to succeed at that age, because, let’s be honest that’s the most important thing. Everyone is supposed to have fun at that point in life – win or lose. I think it’s fine to tell the coaches. If he is the type of kid with CF that coughs a lot, it tells them why and it also tell them how to react God forbid something ever goes wrong.
The last question today comes from a mother of two. One of her daughters does not have CF, while her youngest does. “I am curious if you have wisdom to share about how your sister has encouraged you during your battle with CF? We have a 3 yr [sic] old and she does not have CF. She has a gentle spirit and just adores her little sister. She always wants to “help” with the breathing treatments & chest PT. I’m wondering if there’s anything I can do now to help her understand CF and encourage her to continue to be supportive of her sister?”
This is a hugely important topic. I think my sister has certainly been my lifeline in quite a few aspects of growing up. We managed to go to the same school all the way through college, which is pretty unique I think. We are certainly very close. If you haven’t already read my blog about Sydney, then I would advise you to start there (https://www.gunnaresiason.com/sydney). I think one major thing that you can do to tighten their bond is to afford them the same opportunities as they grow up. Syd and I have a lot of the same interests, and I think that’s been a big part of our relationship, but more importantly, we have always felt like we have been able to include each other in whatever we do (except for the one time her roommates forgot to invite me to her surprise birthday party last year…still haven’t forgotten about that one). We have always had a lot of the same friends and experiences because of that. Their relationship should obviously be centered on things other than CF. CF will occasionally come up in conversation when Sydney and I talk, but typically we talk about normal brother-sister things, including but not limited to me loaning her money that I very rarely see returned. As long as they are always there for each other, they will grow up to see nothing but success!