May is CF awareness month!
May is Cystic Fibrosis awareness month, most of you have maybe possibly caught on by now that I have CF…. and that I'm all about spreading awareness. Even though you may already know some of these facts, I'm still going to force this knowledge upon you and people who don’t have a clue. Just like that blunt man at Black Hawk casino, who didn’t even say "Hi" and was like why you wearing o2? What's Cystic Fibrosis? I told him to google it because I didn’t have patience for such man, anyways...
“Cystic Fibrosis is a life threatening genetic disease that causes persistent lung infections and progressively limits the ability to breathe.”
- The defective gene causes a thick build up of mucus in the lungs, pancreas and other organs.
- For the lungs, the mucus clogs airways and trap bacteria leading to infection and extensive lung damage, and eventually respiratory failure.
- In the Pancreas the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
- About 30,000 people in the U.S, and about 70,000 worldwide.
- It used to be considered a childhood disease because children would live past a certain age but now because of research and advancement in care, people are now living into their 30’s and 40’s.
- There currently is no cure, but with the help of spreading awareness and raising money for research there have been many incredible drugs and therapies that have extended the life expectancy.
Every individual with CF is different. I was diagnosed at four months old. Some aren’t diagnosed until years later (that part baffles me). We all have different severities and difficulties. Some may have more issues with their stomach and pancreas and not many lung infections and for others it’s reverse. Growing up I use to mostly have stomach and pancreatic symptoms. I remember being out from school a lot because my stomach would hurt so much (I just wanted to curl up into a little burrito at the nurses office).
By Middle School and going into High School it switched. I started to need to go into the hospital more often. Instead of every other year or once a year, it increased to every several months to every few months. Instead of being able to just get an IV called a PICC line (peripherally inserted central catheter) in the arm or a midline due to the scarring from the PICC line, I eventually needed to get a port. A PICC line is an IV that has a skinny white flexible tube that they feed into the vein and up the arm where it ends dumping into a main vein by the heart over the shoulder. As a child, getting them placed was my least favorite thing, I would try and hide. But now I have a wonderful thing called a portacath. It's an implanted venous access device, the catheter connects the port to the vein. It’s always there and never comes out like the other IVs, but I have needed it replaced twice, so I’m on my third one.
Another example of how all CFers are different is, when I was younger I was very active and was able to run and play sports. I use to run track in middle and high school and would do the 100 meter sprint and 100 meter hurdles (hard to believe, I know!). Now, I can barely walk far without being winded. Some CFers around my age now are still able to be active. Some that I see on social media run marathons and play sports and go to a gym to workout (gah! Germs!).
Cystic Fibrosis is like an invisible disease, we look fine on the outside but on the inside there is a war raging. So many people when they find out that I have it are like “But you don’t look sick”. I think in college I refused to miss class because I missed so much school growing up and I didn’t want that to effect my grade. I was determined to make it to class everyday if I could, even when I was sick (not contagious to anyone besides another CFers). There were a few semesters that I finally had perfect attendance, I was pretty pumped about that!!
Even when I wasn’t actually “sick” my normal everyday cough sounded sick. In lecture halls I would have students turn around whenever I would cough and give me dirty looks and mutter something to their friend (I wanted to throw my text book at their head when they did that). I sounded like that everyday...you think I’m contagious?? NO ya fool! I wouldn’t go to class if I had the flu! Anyways…yeah maybe trying so hard to make it to class everyday wasn’t the best for my health because when I did need IVs, I would still go to class and go about business as usual and not let myself rest or heal. I guess that’s why I was constantly needing IV antibiotics in college. Things that also did not help were the surplus of germs, staying up late, partying on weekends and other such nights (oh Fiona my funnel, such a bad influence).
Franklin Pierce, was such a fun time but also a time when I was sick a lot. I guess I didn’t want to face the facts that I couldn’t and shouldn’t “keep up” with the college lifestyle. For any young CFer thinking about going away to college, I warn thee to be careful and take care of yourself first! (shaking my head at myself). There were a few times I caved and listed to my body and doctors…one time in particular, it was the summer going into my senior year and I was going to be taking summer classes for a semester. I wasn’t feeling so hot for a little bit but of course I didn’t do anything about it. Moving in was a struggle, but at least I had some help from my roomie. I didn’t fully unpack but I was basically moved in. The next day I had a doctor appointment with my pulmonologist in Boston. My PFT numbers decided my fate that summer and I needed to go in for IV antibiotics for a clean out (I was SO pissed). I fought it for a bit before my doc convinced me and I caved. I had to withdraw from my summer courses and move back out! (I was like are you serious!!??!). Once I got back up to campus, I grabbed my roomie, my inflatable leopluerodon float, and a backpack full of beers to enjoy my last day of freedom. To the lake we went and we floated around in the sun for several hours (and yes of course I got an awful sunburn).
Okay enough of that, back to present day. So my goal, as well as Laima’s, is to raise awareness to anyone and everyone in any way possible. This blog is a way to share some incite as to what having CF is like and maybe helping other CFers going through the same ish* and possibly making their situation better by learning from us. This journey to getting a transplant is definitely a project especially because I need to go to a different state for the transplant. We didn’t find much out there when we first started researching where to go once Denver said they didn’t want to do my transplant. We wanted to see what other people did when they were in this situation, there was limited information online. So now we hope we can help others and to show what the process of an evaluation and everything leading up to a transplant is like.
This month, the wonderful month of May, because it's Cystic Fibrosis awareness month, we found one way we can spread a little awareness. I came across a strawfie on social media. A strawfie is a selfie that one takes a picture of themselves breathing through a straw with their nose plugged. This is a movement to raise awareness for CF by having people experience what its like to breathe with CF lungs. One person was even working out like that to see how it felt. Sooo.. of course Laima and I took a strawfie!!
If you are so inclined and would like to help us spread the word, take a Strawfie and post it to Facebook or Instagram or Twitter and hashtag the following...... #strawfie #CFawareness #CF ......THANKS EVERYONE!!!!!