May is one of my favorite months. It means that winter is mostly (and sometimes completely) over. A few days ago on a walk in the woods I noticed that the last patch of snow has finally melted and that the ferns are starting to uncurl their fuzzy heads. It’s also my mom’s birthday (today actually, happy birthday mom!), and mother’s day, and one of my best friend’s birthdays. These are the things I think of most when I think of May. It’s rare that in April I think, “Next month is CF Awareness month!” But maybe I should? I guess to me, everyday I’m 100% aware of CF and so designating a month to focus on it just seems like a normal month to me.

That led me to think maybe I was missing something. I started thinking about what CF Awareness Month really meant. Not only is it a time to spread the word, raise money, and support one another but it’s also a time for people who don’t have CF to understand it a little better.

In 2015 I wrote a blog called 12 Things You Might Not Know About People With CF, But Probably Should where I listed some of the not-often-talked-about qualities of people with CF. This time I’ve made a list of things about having CF that if you don’t have it, may surprise you.

1. We’re not supposed to be around other people who have CF. Which adds a whole other layer to an already isolating disease. It’s unfortunate for a lot of reasons, but the biggest being that the people that know CF best are also the people who have it. There used to be summer camps specifically for kids with CF but in the early 90’s they had to shut them all down because they realized kids were passing harmful germs to each other and getting very sick because of it. The only way we can connect 100% safely with one another is through social media, email, phone, letter, etc. 

Of course this a personal choice and many people with CF feel that the rewards of interacting with other people CF far outweigh the risks.

2. Exercise is really good for us. There was a time when it was thought that exercise only worsened the symptoms of CF (probably because it does make us cough more, which is actually a good thing), but now research shows it’s quite the opposite. I've always been active and involved in sports and other physical activities and really feel that that's what has kept me as healthy as I am today. So I was surprised when I was talking on the phone with a Grant Recipient recently and he mentioned that there are still so many people out there (who have CF) that think exercise is really bad for us. Honestly, I thought those days were long over and that we were all on the same page about this one. Apparently not. Exercise not only clears the lungs but builds strength and stamina which is key in fighting off infections. 

3. Our skin is incredibly salty. It’s sort of complicated but basically when we sweat the salt and water that normally travel to the skins surface do that, but then our bodies are unable to reabsorb the salt. So when we exercise or get hot we have to be careful that our salt levels don’t become depleted which can lead to a lot of bigger problems. On a hot summer day when I’m exercising I end up with a layer of white salt on my skin that rubs off and almost looks (and tastes) like table salt. If you want a longer explanation of what exactly is happening inside the body of someone with CF, you can read all about it here.

4. We are our own nurses, respiratory therapists, nutritionists and sometimes doctors. That doesn’t mean we aren’t still taking the advice of those people, but over time you become the expert. You’re more in tune with what you need, what works for you, how things work and how to do them yourself. Many of us have done home IV’s which means being experts on saline flushes, IV pumps, late night IV set ups, and how to get air out of the line, among many other things.

5. We get married, have families, go to college, own our own homes, have jobs, drive cars, run marathons, go sky diving, ride motorcycles, date, travel, laugh, cry, grow old... It’s like that Ginger Rogers quote about Fred Astaire where she says, “I did everything he did, but backwards and in high heels.” We’re doing it all, it’s often just A LOT more challenging.

6. Our immune systems are compromised so we catch EVERYTHING. Seriously, sometimes I feel like just by talking to someone on the phone who’s sick I can catch their cold. Clearly not true, but you get what I’m saying. You are more contagious to us, than we are to you. Even though we may sound like we have something terrible, your runny nose and occasional sneeze could put us in the hospital.

7. Being in the hospital becomes normal for a lot of us. The first time I was admitted into the hospital I was 24 and it was definitely the hardest. It was also probably the sickest I’ve ever been, and so far, the only time I’ve needed oxygen. 

Each time since then things have gotten easier. You get into your hospital routine, you get your room set up the way you like it, you soon have your favorite nurses and respiratory therapists, and you know what days the cafeteria serves the best foods. It’s gotten easier but it's still not easy and it's still slightly soul crushing to hear you have to go back in, but, like so many things with CF, you try to make the most of it. Usually, by day 7 when I’m going stir crazy you can find me pushing my husband around in a wheelchair late at night (when the hospital is empty) to get exercise, both of us laughing.

8. Just because we have CF doesn’t mean we’re immune to other ailments and illnesses. In fact, in some ways we’re more prone to certain cancers, osteoporosis, acid reflux, arthritis, sinusitis, etc. Roughly 50% of adults have diabetes (myself included). I don’t think much about the various ailments I’ve collected over the years, until I’m filling out new patient paperwork or seeing a new doctor and I start listing them. I recently had to get an “appliance” made for my mouth from the terrible TMJ I’ve had that’s destroyed my jaw (thanks to all my nebulizers over the years). After listing all the things I take medication for, the doctor looked up and said, “Wow, as if having CF wasn’t enough.” Exactly! 

9. We’re really good at taking massive amounts of pills each day. When I was a kid I would impress my friends by putting all 8 of my fairly large enzyme capsules in my mouth and swallowing them all at once. Now I joke that my second course (after breakfast) is my pill course. My morning medications alone fill up almost two of those plastic prescription bottles.

10. We do hours of treatments everyday to clear our lungs. There are a number of ways to do this. The Vest, a percussor, manual CPT, certain breathing techniques, the Acapella, the Flutter, IPV, the Frequencer, The Vibralung. The list goes on and on and I've tried all (or most of them). Typically I do my treatments three to four times a day. It ends up being 3+ hours of sitting, usually doing a nebulizer or two, while also using one of the above devices. Lately, for me it's been the Frequencer and manual CPT.

10. Although Wikipedia loves to put a number on the number of years we will live (right now it’s around 40) there are SO many people going above and beyond that. One of the former CFLF Board Members is about to turn 71, and she goes swimming, golfing and travels more than most people I know. We also recently awarded a Recreation Grant to man who is 80 and still goes to the gym a few days a week. They both strongly believe that it’s because of their regular exercise that they are where they are today.

11. We’re not all the same. As with any group of individuals there are vast differences in all of us. Even the severity of our CF can vary widely. The one thing we have in common is the tiny CF gene found on our 7th chromosome.

12. It’s not all downhill. I was on the phone recently with the mother of a grant applicant asking for her son's current lung function scores (because the ones they had sent in were over a year old and we require them for all applicants). And she told me, rather annoyed at my request, that “CF patients don’t get better they just get worse and worse!” I was a little dumbfounded at this theory of her's. Especially since she was so closely related to CF and yet still had such a negative opinion of it. But that’s really all it was, an opinion and nowhere near fact. Not only have I seen firsthand as my own lung function scores have gone up in the past (yes, they also go back down from time to time) but I have also read from hundreds of applicants who have said the same thing, and it often relates to how much they’re exercising.

 

Help Others Live STRONGER and LONGER this CF Awareness Month:

       

     

 

 

Erin Evans is the Program Coordinator for the CFLF and organizer of the CFLF Blog. She is 33 and was diagnosed with CF shortly after turning one. She lives in Central Vermont with her husband and their adorable dog. You can contact her with questions or to volunteer to write a blog at erin@cflf.org
 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***   

 

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