Hi! My name is Rima, and I was diagnosed with Cystic Fibrosis at four months old. I’m now 27 years old and am originally from Massachusetts. I graduated from Franklin Pierce University with a BA in environmental science. Last January I moved to Colorado, because I wanted to live near the mountains. I grew up wanting to pursue a career with either wildlife or habitat conservation. I hope to one day get there! Okay enough about me, here is a little background about what CF is to get you started.
Cystic Fibrosis is a genetic disease that effects about 30,000 people in America and 70,000 worldwide. CF causes thick sticky mucus in the lungs and other organs such as the pancreas, stomach and GI tract. In the lungs, mucus clogs the airways and also acts as a breeding ground for bacteria to grow. This leads to infections 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 nutrients. Cystic Fibrosis requires many hours of chest physio therapy in order to loosen the mucus to cough up. Nebulizer treatments are another daily need, as well as many pills and supplements. Some of the pills I take are enzymes in order to digest the food my stomach is unable to. I take 3-5 depending on meal or snack. Since absorption of nutrients is difficult, it’s hard to gain weight and keep it on. People with CF need a high calorie, high fat and high protein diet. Extra calorie supplements are also used for weight gain.
Because of they way our lungs are, it is very easy to get sick. Cold and flu season are the worst but basically I can get sick at any time. Some germs I can only get from another person with CF, and those are the germs that stick around and grow in the lungs. People with CF are not supposed to hangout with each other. We’re supposed to stay about six feet away and wear a mask. This is a rule that a lot of CF centers recommend and enforce. These types of ‘bugs” are not transmittable to you normies (folk without CF). When I’m out in public and coughing, I definitely get some side glances that probably suggest that they are thinking “oh boy, she’s probably contagious”, wrong! No, I’m not sir! Back when I was in college people would sometimes say after a cough attack, “that doesn’t sound good” yeah, not shit it doesn’t, thank you for letting me know… Another phrase I’ve heard people say after witnessing me cough up a lung, ha ha, would be “are you going to live?” in a half joking half concerned way. Those people usually just get a death stare back and a quick “yep” as an answer. Public transportation is the worst for cough attacks…especially in the winter.
Cystic Fibrosis to me has become the norm. Anything CF related I have to do everyday and any issues that pop up are just part of my daily life. I don’t know anything different so this life that I live does not seem too crazy to me, but as for someone that would be dropped in my shoes they might think different. Growing up I was pretty active and didn’t get sick too often, but as I got older it changed. I started to need to go into the hospital more often for IV antibiotics, and was sick longer. In college my hospital admissions became quite frequent. Hmmmm, I wonder why…? Oh, because of all the lovely germs I was exposed to! Of course I partook in drinking activities which obviously did not help my cause. You live and you learn I guess.
Most recently my health has nosed dived into the direction of needing a double lung transplant. Last April I went through the evaluation process at the University of Minnesota transplant center in Minneapolis. I’m now waiting on the list as of late September, and have yet to receive new lungs! My sister Laima and I moved here temporarily from Colorado for the transplant. The list of things I want to do once we’re able to move back to Colorado after my new lungs, is endless. All the places I want to go and hike! All the adventures that are waiting to be had! I’m getting very antsy waiting for my new air bags, to begin galavanting. But, for now, I’m substituting those adventures for ones around Minneapolis and with my partner in crime.
Last year before I started this whole journey for new lungs, my sister and I started a blog to document everything from beginning, middle and post transplant life. One of our main drives is to help spread awareness for Cystic Fibrosis and organ donation. We also wanted to show that even with living with this disease you can still have fun and have a smile on your face. Life isn’t so bad when you have the right mind set! If you would like to learn more about our journey you can keep up with us by following our blog at www.lungstoryshort.com. We also can be found on Facebook, as well as Instagram!