My Story: Breathless. Living with Cystic Fibrosis.

photo-3-e1376078016211-225x300 (1)As you sit at your computer reading this, your lungs are inhaling and exhaling, and you aren’t giving this process a second thought—it just happens. My whole life I have been conscious of every breath that goes in and out of my body.

When I was born, my life expectancy was around 14 years. I’m happy to say that this year I will be turning the big 3-0. However, I feel as if I am actually decades older than this, because my life has taught me so much through the simple act of breathing, or lack thereof.

I was born with Cystic Fibrosis, a genetic disease that mainly affects the lungs, causing chronic infection and deterioration to the point of lung failure. By the time I was in high school, and my friends were worrying about who they were going to take to the prom, I was being listed for my first double lung transplant in order to do my best not to die.

My lungs were not doing a very good job at being lungs by that point. I could barely walk up a flight of stairs. I couldn’t even carry my schoolbooks anymore.

In order to clear my lungs of the infected mucous they were drowning in, I had a chronic cough, and because of the energy I used just trying to breathe with only 30 percent lung function, I was only 85 pounds. In college, you’d think I was the anorexic smoker in your class.

I took a medical leave from college after my second year. I was on massive amounts of antibiotics intravenously for a mammoth infection that would ultimately destroy what was left of my lungs. One of my professors even made me take a final exam while I had an IV infusion going — I haven’t forgotten you Professor Alper!

I quickly became bed bound on 4 liters of oxygen, 24 hours a day, while I waited for the call for new lungs. My two dogs were my constant bed companions.

Just in time, at age 19, I received my double lung transplant at New York Presbyterian Hospital in Manhattan, and for the first time ever I took a normal breath. It was literally so effortless to breathe I thought something must be wrong. It couldn’t be that easy, could it?

My life after transplant allowed me to do all the things I wanted to do. I returned to Boston and was able to be a normal college student. I discovered my love of food and cooking, in my first apartment. I volunteered with sick patients at Mass General Hospital and helped grant wishes through The Make A Wish Foundation. I worked on an online virtual world for other CF patients in combination with Tufts University and Boston Children’s Hospital. I became a frequent visitor of the bar scene and pulled all-nighters trying to cram all my work in; I was just like every college student—except underneath my shirt was a clamshell scar where my chest had been cracked open and new life had been surgically stapled in.

One of my favorite parts of having new lungs was I was finally able to take care of my two dogs on my own—at last, I had functioning lungs and I could actually take them for walks. We take that simple act — taking our dogs out to go to the bathroom — for granted. The first time I walked them after my transplant I held tears back. But the best part of all, my mom who was my entire world, finally got to watch me, her only child, breathe without constantly struggling.

I had a great five-year stretch where things, with a few bumps in the road, were wonderfully normal. A life that most people take for granted was everything I hoped and dreamed it would be. I never once had to focus on breathing—my lungs just fell into place—and I could finally focus on living. When you can breathe everything else is easy. My lungs were content in their new body. We were perfect for each other. But a lung transplant is not a cure—new lungs don’t last forever.

In July of 2009, seemingly out of the blue — and soon after I graduated college and landed an amazing internship at Boston Medical Center — my lungs came down with a condition called acute rejection. Over the course of a week, I lost a massive chunk of my perfect, normal lung function. It was not long after this episode that my lungs decided they were done with me for good, and I was diagnosed with terminal chronic rejection. My fairytale was over. I was soon again going to be dying through a slow terrible suffocation in a snow globe with everyone watching. The essence of life — breathing — was going to be stolen from me just as I was getting so used to life not being about every breath that I took.

But something much worse happened. Six months before being diagnosed with chronic rejection, I lost my mom to breast cancer. My father, who lived down in Florida, died in 2009. Not only was I dying, slowly, but I was dying alone. I just didn’t realize how wrong I was yet.

Because I was young and in otherwise good health, I was offered a third chance at life with a re-transplant—something most people don’t get the option of receiving.

Initially, I refused.

I didn’t want to live without my mom. The truth is, the transplant gave me life, but my mom was the reason I was living.

At some point, as my lungs slowly but constantly declined, I realized how hard my mom fought to keep me alive, this baby that she was told would barely live into her teens. And I knew for her I had to keep fighting. I couldn’t let her devotion be in vain. I agreed I would go through with another transplant.

With the help and care of several very unimaginably devoted friends who tried to together make up for the physical and emotional lack of my mom I waited for a second double lung transplant. This time was harder in every single way. I had steadfast support, but I didn’t have my mom. I dropped down to 65 pounds and needed a feeding tube pumping 4,000 calories in me 24 hours a day. I was on round-the-clock IVs and had to be carried to do anything; I couldn’t even stand up. I was on a high concentration of oxygen. I didn’t leave my house for over a year.

But the world is filled with love and that love is why I held on. I had visitors literally each and every day that kept my spirits up. I got constant emails and cards from friends that couldn’t be here everyday. And when it looked like I might not make it long enough to receive new lungs, I received my second double lung transplant on Feb 15, 2012, thanks to a family that gave me the gift of life by donating their young daughter’s organs.

I know my mom and her all-consuming love was with me every step of the way. Because, at the end of each day, love saves us all.

 

About The Author

Natasha is a foodie, jewelry designer, hospital volunteer, massive Michael Jackson nut, a fighter of Cystic Fibrosis, and an all-around amazing frickin person.

8 Responses

  1. Sandy

    Natasha, thanks for sharing your story. My 20-year old son died from acute traumatic brain injuries from a college sports accident in 2010. I donated his 7 organs, to five recipients. The double lungs recipient was a man with cystic fibrosis. My son was an athlete runner and a singer. I imagine that his lung recipient has the perfect set of pipes, but I don’t know him. (I read Power of Two” and saw the movie, have you?) Thank you for writing about your experience. I am sorry for your mother and dad dying. Thanks to your incredible devoted friends. How wonderful to have friends like family. Keep up the good fight. 🙂

    Reply
    • Natasha

      Sandy, I could never express to you what you donating your sons organs means to each of those families, and even what it means to me. It’s a gift that there really just is not right thank you for. Thank you for taking the time to read my story. I am so sorry for the loss of your son. I do hope that it gives you some comfort that you helped save the lives of literally hundreds of people. My lungs didn’t just save me, but they saved everyone around me. Thank you again for your selflessness in what I assume was the hardest moment of your life.

      Reply

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