“I was born with a genetic disease called Cystic Fibrosis. Cystic Fibrosis, or CF as we call it, is a chronic lung disease that also affects other organs in the body such as the pancreas and kidneys. CF causes a thick build up of sticky mucus in the lungs, airways and other organs. Bacteria in the lungs gets trapped in the mucus causing infections and persistent issues and scarring. The average age for someone with CF these days is about 44 years old. An option for people with an end-stage disease is to eventually get a double lung transplant. It’s not a cure by any means; It is trading one disease for another. I see it as buying time, and that there is an expiration date, you just don’t know when. After moving from Boston and then finding out that the only transplant center that did transplants for people with CF didn’t want to do mine, we had to find somewhere else to go.
My sister moved from Brooklyn, NY to be my caregiver, not only for my transplant but to help me before that as well. I was getting increasingly sick every month and the list of things that I could do for myself was inevitably diminishing. Some of the things that I was needing assistance with was laundry, cleaning, cooking, getting something from downstairs because climbing stairs became a challenge and helping change my sheets. It became a workout to do that myself and even to make my bed I would get breathless. Asking for help is something I had to learn to do. For someone who was always independent, it was very hard for me. Something I should have asked for long before that point, but you live, and you learn. After finding the University of Minnesota Health and having them agree to do my evaluation we went out there for a week long of testing. They needed a few weeks before giving us an answer and their response did not disappoint! They said yes that spring! They told us that during their meeting all my numbers from the tests looked good and that I was a good candidate for transplant. Laima and I were both thrilled at their answer, we were finally able to have our stress levels go down a bit because we now could stop worrying about where I would go for transplant.
It was a little after 1 a.m. when my phone was ringing. I thought It was in my dream and didn’t realize it was my actual phone! A minute later it started to ring again, and that time I woke up enough to answer with a confused ‘hello!?’ As soon as the man on the phone started talking and asking me questions like as whether I have an active infection or fever I realized what was happening. The man also went over the fact that the donor was high risk. That means that they weren’t the best choice of lungs for one reason or another but still usable and that those in particular had been drug abused by the donor. It was the call! I ran into my sister’s room carefully not tripping on my oxygen tubing as I swung the door open hard. Trying to contain my excitement as I was joyfully yelling ‘I got the call, I got the call’ and Laima jumping out of bed because I scared the crap out of her! She thought there was a fire or something and said very loudly ‘whats going on?!?’ The OR time kept getting pushed later and later due to the donor lungs not being at the hospital yet, making us more anxious and ready to get the show on the road. We waited at the hospital for a very long time before actually being wheeled down to pre-op. It was a mixture of emotions for both of us as the clocked ticked closer to when I would be whisked away.
I had said most of my goodbyes to my close friends and family on the phone not knowing when the next time I would talk to or see them again. A transplant can be a terrifying thing, especially a double lung transplant. So many things can go wrong, either immediately during the surgery or shortly after. Surprisingly I wasn’t scared. I was excited but nervous, I mean who wouldn’t be nervous when they’re about to be cut open and have their organs exchanged for essentially someone’s ‘off the street.’ While being wheeled away towards my second chance at life, I looked back at my sister waving to me and saying she loves me as we both fought back happy tears of relief that I was finally going to be able to breathe again. To breathe without the help of oxygen being pushed into my nose through a tube, to breathe without needing hours of inhaled nebulizer treatments, to breathe without needing chest physical therapy shaking the mucus out, and to breathe without struggling at every step sounded amazing.
I was in a giant room full of monitors, bright lights, sanitized tools wrapped and set aside, and freezing temperatures. Once they got me settled on the table, they gave me something to calm my nerves before administering the anesthesia. The nurse that was directly next to me and talking to me reassured me that It was going to go great! As they held the mask over my face and told me to count, I think I might have finally relaxed knowing that now It wasn’t up to me to breathe and that I couldn’t wait to wake up with new air baggies.
Groggy, foggy and confused. I had no idea what day it was, where I was or what had happened. My throat was sore and dry. I hadn’t moved at all once I woke up. Everything was dim and looked blurry to me. I could hear someone near approach. I managed to get out a croaky ‘did I get them?’ A short pause from the nurse who responded with a ‘no, it was a dry run.’ Shock and disappointment flooded over me, and I began to cry. The nurse immediately went to hug me while I soaked her scrubs with my tears. It was a while before I was able to manage a question asking why? What had happened? Apparently, once the surgeon took a second look at the donor’s lungs, they noticed that they appeared to be inflamed and possibly on its way to an infection. Why they waited until I was put to sleep and intubated is a mystery to me. Dry runs are something that can typically happen. It’s when the call occurs and then later is canceled for one reason or another. We were well aware of the possibility, but we couldn’t help but get excited. Essentially alone down in the recovery area, I was to lie there waiting with my thoughts of the mind f**k that had just occurred. Without having have seen my sister, she was told to go back home and go to sleep since they would be keeping me overnight in the ICU only as a precaution. Anesthesia can be a risky thing especially for someone with weak, sick lungs like mine. They typically like to avoid putting patients to sleep when you’re at a certain lung function and don’t have good oxygen saturation. Feeling discouraged I must have fallen asleep because the next morning I woke up to my sister with a beautiful bouquet of flowers.
With hopes up high that I would get another call any day, I hadn’t answered my phone to those series of questions again until April first. Yep, that’s right, April fools day I finally received another call! We both said, ‘let’s not get our hopes up high like that again.’ We were both wary about the possibility of a second dry run. Excitement still surfaced no matter how hard we tried to downplay it. After about seven hours since I received the call and I was about to get into my second shower with the disinfecting soap. My nurse came in to be the bearer of bad news — the dreaded words, ‘dry run’ echoed in our ears. Disappointed. But not as upset as last time, we gathered our belongings and our optimism and headed home. We received no treats on Halloween and were pranked on April fools day, what an unusual sense of humor the universe had in store for us.
April showers bring May flowers. Not only is that true in the sense of nature but for us as well. I was going into the eighth month of waiting for new lungs when I had received a third call. Once again we looked at each other and knew not to get overly enthused. We arrived overnight at the hospital to begin the parade of charades. We had a few hours of down time, so we tried our luck at some sleep. Laima managed to get a few hours in. I was not so lucky; I maybe got an hour. I was wide awake with excited and nervous jitters in my stomach. My mind was also racing with the thoughts of what the recovery will be like and how soon I would be able to go hiking! My OR time was only pushed by a few hours before being wheeled down to pre-op where my sister french braided my hair so it wouldn’t evolve into a rats nest during the surgery. We found ourselves repeating our goodbyes as she handed me a hand-painted card of a sloth she made for me. She wrote some heartfelt words of encouragement to give me a boost as I was leaving her sight for the second time, on my way to hopefully my actual second chance at life. She said how proud she was of me and how excited she was to meet my new lungs.
The next time I saw her was through blurry eyes and a foggy brain. My throat was extremely uncomfortable due to a breathing tube shoved down inside. In that moment and the combination of a voice softly telling me that I was in the ICU and had received my new lungs I knew I was okay. I didn’t care that I was sore or that I had a million tubes and wires coming out of me, or that my wrists were restrained, or that I couldn’t exclaim my absolute happiness. I was finally able to relax knowing that I was given a chance to have a life, a life that I could actually live with purpose. Five chest tubes and sixteen days later I was free from the hospital with no complications. After four months of needing to stay in Minneapolis we were able to move back to Colorado, to the mountains, to home.
I’m now a year and nine months out and I feel amazing, not that it has been a completely smooth ride. There have been times that I needed to go to the emergency department, and have been admitted to the hospital a few times. Last year would be the first time that I have ever needed a blood transfusion and first time getting sepsis. I also inherited a virus that my donor had, called CMV. It’s something that can cause rejection and that is not something that anyone who’s had a transplant wants. Beyond the need for medical attention for those specific issues I have been able to live. I started hiking about two and a half months after transplant when we went camping in northern Minnesota. That propelled the spiral of desire to be outside. Not that I didn’t have it before, but that I now physically could do things without stopping every several feet to catch my breath.
Since then I did a hike on my five month lungaversary at 10,000 feet elevation. I was able to go to the Albuquerque balloon festival with my best friend. Hike whenever I please, go off roading in Moab, hike to Delicate arch in Arches National Park. Go kayaking and drag the kayak myself. Walk out onto the sand dunes at Sand Dunes National Park. Go camping weekend after weekend in the summer. Try white water rafting for the first time. I was able to stand up to two of my best friend’s wedding’s. Do the longest hike I’ve ever done in Vail which was ten miles! Go to Disney world and Universal studios and walk ALL day long and meet a bunch of my transplant friends who also have CF.
I know I wont be around forever because transplants aren’t forever, but in the time I do have the possibilities are endless. One of the products of having Cystic Fibrosis is that we are used to things going wrong. Our mentality is different than most in that which we aren’t afraid of death itself but at the idea of not having to have lived. We hope that we can stay on this earth as long enough to experience what others have. We may be closer to death at times but we can’t let that break our spirits and love for life. I plan on making the most of the gift I was given because of someones selfless gift to become an organ donor. 2019 better watch out because I have plans. Plans to travel more, have more experiences with people I care about, get more involved to help people with CF, try new things and to do my first 14ner (a mountain peak that’s about 14,000 feet in elevation) ever this summer.”
This story was submitted to Love What Matters by Rima Manomaitis. Follow her on Instagram here. Submit your own story here, and subscribe to our free newsletter for our best stories.
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