Taking Charge of My Life

By: Mandy Murawski

I remember looking up at the fuzzy fluorescent lights through my stigmatized eyes as nurses wheeled me down the hospital hall. The fuzzy blur of lights hypnotized me. I drifted back into daydreams of this crucial moment, where I had always pictured myself trying to escape through the nearest exit. Yet, here I was at peace. I was almost lost in my thoughts, in a state of shock where I could hardly think straight. I even had to ask the nurse, “Am I really about to receive my double-lung transplant?”

Yes, I was not only about to receive the most precious gift that any one person had ever given me, I was also going to end my battle with Cystic Fibrosis, a genetic lung disease that had destroyed my lungs. This disease had left me with only eighteen percent of my lungs functioning. My diseased lungs would fill with bacteria from constant lung infections, which ate them away to nothing. I was going to end my struggles with difficulty breathing, excessive coughing, oxygen dependency, mucus build up, the need for several machines, a feeding tube to maintain weight, and IVs. I was going to breathe again. I was going to feel my age, instead of a helpless, trapped youth that was caged in a lifeless body. I was going to live!

I had waited over three very long years for this magical day, and there were many struggles. The first major struggle was realizing I was dying. Doctors first told me I would need this life saving surgery in order to prolong my life when I was only sixteen years old. I had never thought about a lung transplant being the type of cure for my disease. I was hoping for the genetic cure, the hope of many C.F. families. I had to cope and deal with the aspects of dying. In doing so, I decided I wanted to live, and I was finally evaluated and placed on a waiting list for double lung transplant at University North Carolina in Chapel Hill (UNC) in June of 1997 at age seventeen.

I can tell you what it feels like to be dying from Cystic Fibrosis. I remember this distinct smell of decaying lungs mixed with the smell of rubber oxygen tubing. I had no energy and even had to have a machine to breathe for me when I slept. My fingernails were purple from the lack of oxygen. I was starved for air and yet, very tired of breathing. My mother even had to wash and style my hair. I would get very weak from just raising my hands above my head. I cannot begin to tell you about the profound uncertainty I had about living, especially when I would cough up cups full of blood.

The next challenging step was fund-raising. My family and I were told to raise funds for unpaid medical expenses. Friends, neighbors, and the community were all involved in my life saving fund-raising campaign. We raised money across middle Tennessee and in my hometown, Port Huron, Michigan. It was very heartwarming that so many people cared about me. It gave me more of an incentive not to surrender and to keep fighting my illness. We raised enough money for medical expenses in a quick six months. Shortly after, I knew I was running out of time to live. We then decided to move to Chapel Hill, North Carolina to receive the best of care from UNC.

We moved thinking we were going to just sit and wait. I got a hospital pager in hopes that it would blast the long-awaited news my heart desired. We had become discouraged somewhat from the long wait, the silence, and the incredible amount of wrong numbers that came through. Though I sometimes got lonely, I wasn’t very bored. I took my antique, fat cat that has been with me since I was seven years old. I took my computer and stayed connected to family and friends through the Internet. My mom came to take good care of me. She was my angel, my rock, my maid, my nurse, my beautician, and my taxi driver to every appointment. During this time, she had to unselfishly have a long distance relationship with my step-dad. They really love me.

I was also very busy with my health. U.N.C. had me working out three times a week in Physical Rehabilitation. I had to wear a high volume of liters of oxygen during exercise, so much that I even had to wear an oxygen facemask. I couldn’t have that many liters of pressure on my nasals through regular oxygen tubing. I was made to work out for thirty minutes on a treadmill and then finish up with leg weights. It was the hardest thing I ever had to do. I would cough and cough. I could not breathe well through the whole thing and would get the most awful headaches. I could hear my heartbeat in the back of my head just pounding and taunting me. I was so tired from this that when I would get back to our apartment I would hook up to my breathing machine and sleep all afternoon. This kept me alive and helped reduce my infections. It was helping my body prepare for the next major step.

My second chance, re-birth, or miracle happened on a Thursday, February 10, 2000 at the age of twenty. Thank the lord or maybe the stars for the fate of that Thursday. I was losing my battle with Cystic Fibrosis and I knew it; I felt like a failure, and I was running out of time. This famous day I speak of started out like any other Thursday, I had to go to the hospital for a clinic visit. We had these visits down to a routine. I would get dropped off at the front door and Mom would meet me in clinic. I couldn’t walk very fast or far because I was carrying my oxygen tanks.

After waiting a long time, they would have to give me their oxygen tanks because they couldn’t have me running out of oxygen before I got home. Then they would take me back to a room with a computer that measures my lung capacity. I had to blow into this massive machine that would measure my lung function. I actually remember how proud I was; I had gained one percent more of my lung function, meaning that I now had eighteen percent of lung capacity still working. The doctor gave me the good job look, and I was out of there. After leaving the hospital, Mom rewarded me with a haircut. It helped to spice up my spirits, though, not more than what happened next.

It was a break in silence, it was heart stopping, it was finally here, the blast from my beeper. In a state of shock, I dialed my transplant coordinator’s phone number. I could tell from the sound of her voice this was it, and she shouted, “It’s a go!” We were in a frenzy to get everything ready to go to the hospital and to get there as quickly as possible. I ended up forgetting everything that I had planned, I just could not think, I was in such a hurry. Soon we reached the hospital. They began to prick and poke me; they also gave me this awful mixture to drink. They made me sign tons of consent papers and asked a lot of nonsense questions. They asked, “ Do you understand the procedure you’re about to receive?” Procedure? What a funny way to label your future, didn’t they know it’s more than just a procedure? It was everything to me; it was my life.

After hugging my mother good-bye or hopefully a see you soon hug, the nurses began to wheel me down to the operation room. I got my silly question answered, which I already knew the answer, but needed to hear it. “Yes, dear. You are going to receive your double-lung transplant now.” Great! Next, I was wheeled into the operating room. It looked like a big steal monster that was about to swallow me whole. I recall thinking this must be what the inside of an alien ship looks like. I also remember how cold the room was. I got really worried about soon being naked and really cold. It wasn’t so bad though. I was soon counting down from ten to one, and only made it to seven before I was unconscious.

Five hours after receiving my double-lung transplant, I started prying my eyes open. I began to notice all the tubes and lines running into my body. It looked like the wires on a robot. Suddenly, I realized this room was as scary as the operating room, reminding me of something from the Sci-fi channel. There were machines encircling me, wretched restraints holding me down, everything seemed to be looking at me. From one of the machines I could hear my heart beat. I then detected this massive ventilator tube stuffed down my throat. I felt it was too colossal for my little throat and I began choking. My struggling only brought in unfamiliar voices, fussing at me to stop. The voices reassured me that if I were a good girl, I would be rewarded by a release from my restraints.

Thankfully, familiar voices conveyed to me how well the oxygen looked flowing through my body. I no longer had pale skin or purple fingernails from the lack of oxygen. Now, I had bright beautiful skin and gorgeous pink fingernails. My nightmare was over. I comprehended that my long anticipated miracle had come true. I was going to live, and I was going to be able to breathe! Someone gave me the most unselfish gift; they gave me the gift of life! I was going to accomplish all my dreams and more. My future now had endless possibilities, and I now have two birthdays as a result.

It was a long month recovery in the hospital, but soon enough I was free. I was still sore but noticed how easy it was to walk around. I also noticed how empty our apartment was after all the machines and oxygen tanks were removed. It was almost eerie at first; a big part of me was gone. It was really hard to fall asleep at night; my room seemed too quiet. No humming came from the machines, I felt almost lonely. I got over it fast! I slowly got my independence back. I was driving myself to appointments and Mom was no longer the chauffeur. Plus, I got to keep my promise to my little sister. My promise was to take her to Disney World once I got better! By the end of May, we were all running around Disney World; it was so much fun!

It has been nine months now, and I never could have pictured a better outcome. I haven’t had any rejection. My lung function is currently at one hundred percent. I had my feeding tube removed and I’m eating and maintaining my weight, all on my own. I am attending college full-time. I am taking Gym class for the first time ever! I don’t think twice about walking up and down stairs to get to my classes. I even go dancing with friends for hours and hours at a time. I have a new part-time job at a video store. I can’t wait to visit everyone that helped us raise money and all my friends; I want to show them my new breathing skills.

When people think of challenges they have to overcome, some never think of these challenges, something as simple as breathing or walking. We all take for granted life’s smallest gifts. We never realize how precious something as simple as breathing is to us until it has slowly been taken from us. I was only twenty years old and knew what it felt like to be dying. I stayed strong, and now my life is better than ever. I feel I have moved on and am trying to forget about the past, but not so much that I don’t appreciate each day!