“It is hard to grasp that a year has already gone by. And even more than that, that I’m actually here to write this. Very bittersweet. Mine and my family’s life drastically changed when I was diagnosed with Chronic rejection of my first set of donor lungs. I have Cystic Fibrosis which is a genetic lung disease. It affects all organs but really targets the lungs. We could have never prepared for the downward spiral that was about to be our lives as we endured a new journey.
When I was 16, I was referred to Stanford in California where I underwent the evaluation for a double lung transplant because this was my last option. I went on the waiting list when I was 17, and after waiting nearly 9 months, I received my first set of donor lungs. My lung function was an average of 20% at the time of transplant. I was able to get up to 93% lung function but the lungs were rejected because my immune system recognized the different DNA and fought them off just like an infection.
In 8 months, I witnessed my lung function dropping every two weeks. It brought me to a whole new ‘end stage lung disease’ that truly shook my world. I had been end stage before so I assumed I knew what it would generally feel like. But I couldn’t have been more wrong. My lung function had gone from 93%-9% in that span. This is an actual picture of my lungs…
My body became extremely frail as I continually lost weight. Relying on a feeding tube for my nutrition because I was too sick to eat. My breaths became so shallow to the point I was on bipap 24/7 and totally bedridden for the last two months of my wait. My anxiety increased to an entirely different level than I had ever experienced before. Genuinely gasping for air day in and day out. Hard doesn’t even begin to describe how this was for me. Not to mention terrifying and traumatizing.
I questioned my strength. Both my mental strength and my body’s strength. I doubted my will to live. I knew I wanted to live- who is truly ready to die at 23 years old? But I felt hopeless. I was doing the best I could to accept what I thought was my fate. Rushing to try to find true peace with my situation. There was so much more I wanted to do and see. This consumed me. I just wasn’t ready.
But I mostly worried day and night for my family. For the devastation this disease already caused them but, more than anything, for the pain they would have to feel for the rest of their lives as they tried to go on without me. I knew I would be okay no matter what. But would they? This haunted me above all else.
I wanted to believe God would protect them and guide them through our journey, regardless of the ending. But I felt guilty because I was really questioning God and my faith at that point. So how could I expect them to trust in His plan when I was so unsure of it myself? I was angry, heartbroken and lost. Just embracing any and all small improvements and glimmers of hope. Constantly giving myself talks. ‘You can do this. That real call has to come. And, this will end. This suffering is only temporary. Hold on.’
I am being honest when I say, toward the end of my wait, I didn’t believe those pep talks anymore. I was so exhausted and tired. Breathing was way too much of a chore with only 9% of my lung function remaining. And although I wanted to keep on living, I didn’t want to suffocate anymore. That’s how it felt literally every second of every day. I ultimately just wanted peace and to escape my condition, whatever that had to mean. I didn’t know it was even possible but I feared living and dying all at the same time. Living hurt but I was scared of the unknown with dying. Would it be painful? Will it be a similar feeling as to what I could only imagine drowning would feel like? And of course, the most important and probably talked about/debated question: what will be on the other side? We all have our beliefs but until it happens, you really can only guess.
I did all I have ever known how to do when in doubt. I put on a mask and kept it on because I didn’t want to worry my family anymore than they already were. Even though I believe they wore a mask for me most of the time as well- we wanted to protect each other.
I spent my days living in a balance of two realities. 1) Living as though all was ‘normal’ in my world. But also, 2) As if I were going to die that day. For anyone who hasn’t experienced the true end stages of life, this may not make sense. But I never wanted anyone to act differently around me because I was the ‘dying girl.’ My family and I weren’t naive to what could happen but we never wanted it to consume our time together.
At the same time, I never wanted to waste any of my time that I had left. So I did live my life differently. I laughed harder, lived fuller and loved deeper. I did go on epic adventures. I summited my first mountain. I did the most intense hikes I had ever done.
I wanted that adrenaline of living my life in the fast lane. I genuinely tried to make all of my days an adventure. Because I wanted to feel ALIVE. No matter how hard the days became. Isn’t that what life is all about anyway? Adventures and experiences? The moments that take your breath away?
It is both a blessing and a curse to experience life being on deaths door. I’ve had a different understanding of death because my life has truly flashed before my eyes. It’s surreal because death seems so far away but when you are face to face with it, you realize how life can be taken from you in an instant. All that separates you is one moment. There’s a very fine line between life and death. There is only one guarantee in life and that’s that this comes to an end for us all. But ironically, until you see or experience it for yourself, it is entirely too easy to act as if you can live forever.
In a way, having these life or death experiences is a privilege because it has shown me something so much bigger and so much more powerful than myself. I dared to put the gas pedal to the floor and live with no brakes. It has allowed me to dream bigger and live outside my comfort zone because I know I have nothing to lose. Nothing to fear. Ultimately, it has strengthened my faith and taught me a whole new meaning of ‘live each day to it’s fullest.’ It has opened my eyes to the realization that I won’t be remembered necessarily for my successes or failures, or materialistic possessions, and not what I received but rather what I gave- my character and significance in this world will be what is reflected in my legacy.
People tell me that I’m an inspiration and a hero, but the concrete foundation of who I am comes from my loved ones. It has to come from somewhere, right? They are truly the heroes in this story.
They instilled this courage, motivation and strength in me. For that I’m forever grateful because it has made my courage and perseverance limitless. It’s given me the power to tie a knot and hold on when I was at the end of my rope.
They are my biggest fans and I am theirs. I attribute most of my success to them. This disease isn’t for the faint of heart and they have handled it so beautifully.
Because of my two donors, I have been given seven more years and counting. My first I was told was a late teen-early adult male who was in a tragic accident. He donated every one of his organs and saved 8 people. I unfortunately don’t know anything about my second donor. Because of them, my story had a happy ending. It’s pretty amazing and astonishing to me how two complete strangers could actually be two of the most important people in my life. Live life and then give life. Be someone’s hero. Leave a legacy of life. You may be done with your journey here on Earth but you could continue living through someone else- it is our best chance at forever after. Please. I beg of you.
I will always have Cystic Fibrosis. There is no cure. However, I don’t have Cystic Fibrosis in my lungs anymore (I do have it still throughout the rest of my body and have Diabetes and Intestinal issues, as well as kidney stones and so on). And when my lungs run out of air and my heart takes it’s last beat, may I also become a hero to someone.
Remember to marvel at your life. At the heartache that shaped you and the suffering that strengthened you. Because despite life’s circumstances, you continue to grow. Allow it to happen. Be gentle with yourself.