**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 have been collecting Ask Gunnar questions for a while now, and for some reason, I haven’t done a post. Time to end that trend. It’s interesting to me that so many people have quite a few similar questions when they reach out to me. Here are a few of the most popular questions I have been asked over the past few months.
Remember, you can always send me an email at GunnarsBlog@Esiason.org or message me on my Facebook page HERE if you want to be featured in an Ask Gunnar blog post.
The first question comes from Destiny. “My doctor wants me to consider getting [a feeding tube] and said it’d be a good idea to reach out to a couple other CFers who already have [one]…
1. Are there any downsides of having it, and what are they?
2. How long have you had yours?
3. What made you decide to get your feeding tube?
4. How much weight has it helped you gain?”
The idea of a feeding tube can be very scary – I totally understand your hesitation. For years, my doctors and parents tried to persuade me to have one placed, but I put up a major fight against it. Finally, during my sophomore year of college I developed pancreatitis, dropped a significant amount of weight and needed to take care of business. My G-tube was placed in May 2011, and I’ll be totally honest here – the only part that sucked was the immediate period of time right after the surgery. The recovery is pretty annoying, but once the wound healed, everything went back to normal for me. By the time 2012 rolled around I had gained close to 30 pounds and felt significantly better. My health stabilized almost overnight and I saw an increase in my pulmonary function. As far as decision-making goes, getting the feeding tube placed, was one of the best things I ever did for myself. If you want to see what life with a feeding tube is like, just go ahead and click the Videos tab at the top of the page and you’ll find 5 videos I put out last year to help erase the fear around the topic. You can also visit www.mytubefeeding.com. It’s a really fantastic source of information for tube feeders – one that I helped create with Nestle Health Science!
I am going to leave the person unnamed who asked this next question. She asks, “How can I hide my IVs from everyone at college when I go back to school next week? Most of my friends/acquaintances don’t know about my CF.”
While I certainly do advocate for people to share the story of their disease with the world (you don’t have to look further than my BLOG post from last week to learn why), I do understand why some people may want to keep it quiet, especially something like this. There is a degree of vulnerability that people with CF feel during a course of IV therapy. Whenever I have needed IV antibiotics I have done so with a homecare company so I’m not stuck in a hospital for two weeks. I also love having the flexibility to continue normal activity when hooked up to the IV once I start feeling better. In college, normal activity means going to class, and even during my senior year, going on Spring Break in the Bahamas. Yes, I was the legend who went on Spring Break mid course of IV’s. With that being said, I definitely did my best to conceal the treatments during class simply because it was a distraction for my peers – it’s sort of the same kind of thing if I ever need to be on IV’s during my work life now too. Whenever I go on IV, I make sure my meds come in the little self-pumping IV bags. I think they are called Eclipse Balls. That’ll be a fun Google search. Basically they allow for a person on IV’s to have a little freedom away from an IV pole. They are also really tiny, so whenever I need to go out in public with an IV, I just slip the meds into my pocket. No one would ever know an infusion is going on unless I said something. In the event the particular antibiotic isn’t stable enough to last a few days after being mixed (long enough for a shipment from the homecare company to reach me), my homecare company certified me to mix the antibiotics myself and inject them into the IV balls before every dose – that allowed me to go to class and conceal my IV treatments regardless of whatever antibiotic I needed to use.
The next question comes from Ryne, “My long-term boyfriend is going through a very hard time with his CF. [His] doctors aren’t saying anything to help ease his mind, and that has obviously gotten to him. I am always trying to stay positive for him, and for us, but most days it doesn’t seem like it’s enough. I was wondering what ways I could comfort him?”
I think it’s important for people with CF to feel like they have more in their lives than the disease, and I think a person’s support system plays a huge role in making that happen. You have to be sympathetic to the situation, but at the same time, you really have to do your best to make your boyfriend feel like he is still involved in every day life despite being sick. For me, there is no greater motivation to be healthy than when I get a taste of how great life can be. The little things, like getting out of the house, and actively doing something, whether it’s going to the grocery store or going out to eat can be big time releases from the stress of CF. Every person with CF goes through his or her whole life trying to find the perfect balance between healthy living and being alive. Help your boyfriend explore that balance. Sometimes, I’m sure he will want to be left alone, other times, he will want nothing more than to be included in whatever is going on. Do your best to figure out when each moment comes up and act accordingly.
In honor of St. Patrick’s Day, this one comes from Dave, “Are you going to be drinking a few green beers tonight?”
Absolutely not. Green beer grosses me out. As soon as you turn something into a weird color with food dye, you ruin the whole thing for me. With that being said, I’m definitely looking forward to putting away a Budweiser or two. I have to put a little bit of American spin on things. The taste of America has great calories too.