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Post by Rima Manomaitis

Journey to a Lung Transplant: Part 1

Hi everyone! My name is Rima Manomaitis. Some of you may know me as @lungstoryshort on Instagram, but this time I want to give you the actual long story…short, especially for those who aren’t familiar with what life with CF is like.

I was born and raised in Boston and lived there with my parents, brother, and sister. No one else in my family has Cystic Fibrosis, so it wasn’t until I was 4 months old that I was diagnosed because it wasn’t on the radar as something to check. (Fun fact, it’s common for more than one sibling to have CF!) My childhood was as normal as it could get with playing outside, collecting beanie babies, watching Disney movies, running around, and going to camp in the summers. But what also seemed normal to me at the time, may not have been normal to most. I had horrible stomach issues almost daily and would spend a lot of time in the bathroom or the nurse’s office. I had to take enzymes with almost everything I ate, pills in the morning and evening, breathing treatments by a nebulizer, inhalers, and chest PT. Chest PT sessions consisted of being clapped on the back, sides, and chest to loosen the mucus that was stuck in my lungs. This was to prevent the growth of bacteria and infections that wanted to hang around inside. And after many years went by, they came out with the first Vest machine! The Vest is a treatment method that you wear like a regular vest, but it has tubes that connect to a pump that oscillates air and creates pressure which then shakes the whole upper body. It is the same concept as chest PT – shake and loosen the mucus. Looking back at it now, that Vest is as prehistoric as the dinosaurs are, compared to the ones we have now! They have since evolved to portable machines and even further to a Vest with no cords or tubes so that you can walk around with it, drive, and go about your daily life.

During elementary school, I was only admitted to the hospital about every other year to once a year. Once I got to middle school, that yearly admission turned into going a few times a year. By the time I was going into high school I was getting admitted so often that I got my first portacath placed in my chest. A port is a device that allows IV access easily and is meant for frequent and long-term use. Over the years leading up to the port, I had PICC lines placed in my arms. A PICC is a tiny tube that gets fed in and up the arm and ends close to the heart. Due to years of scarring from having so many placed, they couldn’t get it all the way up anymore. They even tried midlines which only lasted a short while because the medications would burn and my veins wouldn’t allow the tiny tubes to go up any further. High school was also the time that I needed to get a g-tube placed in my stomach. A g-tube is a feeding tube used to help gain and maintain weight. I have always been skinny and underweight, but it started to present more of a problem when I was in high school.

High school was a regular inconsistent ‘schedule’ of hospital admissions and IVs about every 3-4 months. I was happy they allowed me to do home IVs instead of getting admitted to the hospital for two weeks at a time. Either way and despite my best efforts, I missed a lot of school throughout the years. That bothered me so much that once I got to college, I made it my mission to not miss classes. It sounds impossible due to my track record, but most of my semesters I only missed class if it was an emergency. Despite that, I pushed myself very hard in school, forcing me to strive for good attendance, grades, and extracurricular activities. I may only have had 30% lung function at the time, but I think I did pretty damn good. But, there were moments when I struggled hard. For example, I would leave for class extra early so I could have time to catch my breath before walking into the classroom as well as leaving time to have a cough attack since physical activities would agitate my lungs. Coughing in class was also a ‘thing’ because I would get so many head turns and side glances when I was “hacking up a lung”. One of my professors who apparently had a bad memory would also make a sassy comment about it but would feel bad when I reminded him why I was always coughing. Lung infections and the need for IVs were significantly increased during college. There was an influx of germs, lack of sleep, and stress about assignments and grades. I was able to multitask getting them done throughout the day between classes, naps, and having a visiting nurse come to get labs 1-2 times a week.

College was also the time I was told that I was getting close to needing a double lung transplant. It was not exactly what I wanted to hear during my sophomore year of college at age 19 when the only thing on my mind was passing my geology class. The following few years I was stable around 30% allowing me avoid going for a transplant evaluation until my senior year! That fall was stressful because there are so many tests and appointments that are included in the evaluation process. I was lucky enough to be able to spread them out over a few months because it wasn’t urgent. The most annoying part of the process was that the school I went to was not close to Boston but in rural New Hampshire. It would take close to two hours in the morning and evening to get to Boston if it was during high traffic time.

Once I had all the tests and everything in-between checked off on the list, the team met and decided I was ‘too well’ to receive a double lung transplant at the time. So, you see, the thing is that you have to be sick enough but can’t be too healthy to get a transplant! There’s a small window of time and luckily it was not my time yet! With that news, they wanted to keep an eye on me and to see me every 3-6 months to keep up with testing and to check in on my quality of life.

Fast forward a few years after graduation and a handful of other lovely health issues, and I was planning on moving to Colorado. But not before becoming very sick, needing to stop working, and having four hospitalizations in two months. In December of 2015, I went on oxygen 24/7 which was a hard adjustment. I was very resistant to the idea months prior while they tried to get me to wear it overnight while admitted.

My lung function had dropped to a scary number, something I had never seen before in my life. I was at 18% for the first time and, definitely, could feel the difference. Moving to Colorado was going to be tough, but I was still all in. And after pushing my move day, I was finally on my way! My sister, Laima, volunteered to help me move across the country and drove with me. It was so helpful to have her to go with me, and she drove most of the time since I was still recovering and very tired.

When I was in the hospital after needing an urgent trip to the emergency room because I could barely breathe, they told me there that I needed to find a transplant center ASAP once I arrived in Colorado. This was a month before leaving. They said it was something I needed to figure out quickly and to get on a list which proved to be a lovely added stress to my move. Thankfully I was moving in with my brother in his house, so I wasn’t alone. After finding out that the transplant center here in Colorado didn’t want to do my transplant either, I was frantically looking at other options with the help of my sister. She found one with the assistance of a friend who recommended Minneapolis from past personal experience. Once they received my medical records and other information, we moved forward with making dates for my evaluation. A new chapter in my life was just beginning and the journey began on our drive to Minneapolis for a week-long evaluation.

To be continued…

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.