We are months into the COVID-19 outbreak in the United States and we are all experiencing a range of emotions. Everyone’s experiences, emotions and thoughts are unique to their own situation. I’ve found myself to be weirdly prepared for this situation. No, I’m not a paranoid doomsday prepper but because having CF for 26 years has, in a way, trained me for this lifestyle change that we are all facing together. I am not taking COVID-19 lightly and do not mean to compare its severity to CF, that is not my intent at all, but I do feel like the CF community has an important voice when it comes to the current situation.

I was in 5th grade when I first had a bad lung infection that resulted in my doctor telling me I needed to stay home from school in order to rest, do extra vest treatments and start oral antibiotics. 

I guess you could say this was my first “stay at home” order in a way. I listened to my doctor. I stayed home from school for two weeks. I didn’t see my friends or go to hockey practice. I was bored and I was definitely not happy but I eventually got better and with time I was able to rejoin my classmates, friends and teammates. It’s not how I pictured 5th grade going but that’s what happened and I had to deal with it.

Like most people with CF, my 5th grade sickness started to become a yearly occurrence and more intense each time. Since I was 12 years old I’ve been hospitalized at least once every single year from 2006-2018 with lung infections, pneumonia, and other CF complications that damaged my lungs. Hospitalizations mean PICC lines and IV antibiotics for at least 3 weeks, or in some extreme cases, even months. If you have CF you are in complete isolation when you’re hospitalized. You can’t leave your room hardly ever and if you do, you’re monitored and wearing a mask. Doctors and nurses can’t enter your room without gloves, gowns, and a mask! And when they leave your room they take it all off IN your room because they can’t bring your germs anywhere outside your room. The hospital leaves your food tray outside your hospital room door because they know they cannot enter a CFers room. Cross infection is nothing to down play. You learn to live in a hospital room. You hope you’re lucky enough to get one with a nice view or a quiet neighbor. You don’t get a roommate and sometimes you can’t have visitors if they might be sick. It sucks, but you get used to it. 

I think the worst part of being hospitalized is the mental aspect of it all. 

You worry about your health, your job, paying rent, bills and overall you just feel left out. I can’t tell you how many special events I missed out on as a kid and young adult because of a CF “tune up” and that’s where when I say we’ve trained for this lifestyle comes into play. People with CF are used to putting their life on hold and living in uncertainty. We know what it’s like to miss family and friends, to interrupt a routine suddenly and press pause.

This pandemic is like nothing we have ever seen as a country. This goes way farther than a CF hospital-stay, I’m aware of that. But if I could offer some words of wisdom as someone who has dealt with isolation on a smaller scale, I’d leave you with these three things:

1. Be Patient.
Healing takes time. Medicine takes time. Results take time. Believe that a better day is coming but don’t rush it. I absolutely hated sitting in a hospital bed for months with an IV but I did it because I had hope that one day it would be over and my life would continue. Be smart, be patient and wait this out safely from your home if you can. 

2. Use your time wisely.
I’ve wrote some of my favorite stand up bits while hospitalized. I’ve had some of the best conversations while hooked up to an IV talking to an old friend on the phone. Make the best out of a crappy situation and use your time to your advantage. You don’t need to have a full transformation if you don’t want to but find a good use for your time. Read, work out, relax, write, reach out to an old friend, eat anything you want, find a new hobby, pick up an old one. Do what you need to in order to get through this but don’t say you’re bored. My 6th grade English teacher once told the class that only boring people get bored and I’ve believed in that saying ever since.

3. Be Respectful
This is the big one. Anyone who has been in and out of the hospital can ensure you that everyone who works in the health care setting deserves your respect. These people have dedicated their life to helping people. Thank them. 

Tell them you appreciate them and don’t make life harder for them than it already is. And right now that means stay home. I cannot think of a bigger slap in the face to any health care professional than to wave off this pandemic like it’s no big deal.

I think of all the great nurses and doctors I’ve had in my life. I think of my friends, Morgan, Maggie, Tyler and Laney, who are just starting their nursing careers and are now facing this COVID-19 pandemic. I’m scared for them. I’m scared because I know they’ll go above and beyond and put themselves at risk to save others because that’s just the kind of people they are. They shouldn’t have to but they will. 

I also think about people who are not health care professionals, who refuse to stay home and this is where I get mad. These are the people who are not taking this pandemic seriously. These are the people who are just going to visit their families or friends real quick and its okay in their minds because “they’re being careful.” Unless you are gloved, gowned, and masked for droplet precaution, you are not being careful. You are being selfish and you are being disrespectful to those who don’t have a choice and to those who are truly trying to help. Health care professionals have enough to worry about, don’t add to their plate.

I have waited 26 years to feel as good as I do now. Thanks to Trikafta I am feeling great and like I have a new lease on life. I, of course, want to go out into the world, do fun things and be with the people I love but I will wait. I will respect and trust the process. I hope others do the same.  So if you need me, I’ll be hanging with my dog for as long as it takes.

 

      Help Others Live STRONGER and LONGER-

 

 

Martha Garvey is a 26-year-old with cystic fibrosis. She was diagnosed at birth. She lives in Minnesota and works as a college instructor for young adults with autism. In Martha’s free time she is busy snowboarding, playing hockey, kayaking, or playing with her dog Charlie.

 

 

 

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