I lived with advanced lung disease for 10 years. When I thought about my future, I never expected to get better or feel “good” again. I didn’t have any improvement on Trikafta® and expected that things were only going to continue to get worse. And that proved true for a while. Within a span of 12 months, I battled massive amounts of hemoptysis (coughing up blood) and suffered a tension pneumothorax (a serious type of collapsed lung) that caused cardiac arrest and landed me in the ICU — all while becoming more reliant on oxygen. I fought back against every “illness” with determination to not let this be the last year I celebrated on Earth.
I finally received my double-lung transplant in late February 2023. Now, I have celebrated my one-year anniversary post-transplant, and the transition that happened overnight was nothing short of a miracle.
Before my double-lung transplant, my nephews used my oxygen cord as their own personal teether. My 1-year-old nephew knew how to turn on my oxygen when I asked him to, which meant he also knew how to turn it off because he loved watching the light go on and off. I was short of breath putting on pants, tying my shoes, and talking. I couldn’t run with my nephews or lift them up for more than a few seconds without struggling for breath. While I still enjoyed my life, it was hard. I was dependent on oxygen 24/7, and I fought for every breath, every word I spoke, and everything I did.
Thirty days after being listed for transplant, I was fortunate to receive the call that they found the perfect donor for me. I was prepared for a long wait, so I didn’t pack my to-go bag because I thought I had plenty of time. We rushed around the house, quickly packed, and headed to the hospital.
I spent three days on a ventilator after my double-lung transplant, and as soon as I was extubated, all I wanted to do was get up and walk. I was so tired of being confined to a hospital bed. As soon as they took me off the ventilator, I could breathe — no supplemental oxygen needed! Even though my incisions hurt terribly and my body was stiff from being in a bed for three days, I could instantly feel the lightness of my chest. For the first time in nearly 10 years, I could breathe deeply again. I could hold a conversation with my hoarse voice and sore throat without feeling short of breath.
The first day off the ventilator and every day after that, we walked. My husband and I took walks around the hospital multiple times a day. I loved this new feeling of normalcy. I had to stay in the ICU for longer than necessary because the step-down units didn’t have any open rooms, so my ICU nurses would cheer me on each time I passed their desk. They always told me that I was walking more than they do each day. Obviously, I knew this was wrong — have you seen how much nurses walk? But I greatly appreciated their encouragement!
Even though my chest hurt and I was incredibly sore, to know the feeling of breathing deeply and easily was awesome. I wasn’t struggling or trying to catch my breath constantly. I was simply just breathing all on my own. I would obsessively check my pulse ox and the nurse would tell me, “Your lungs are working well. You can stop staring at your pulse oximeter.” But that was a hard habit to break.
Since my transplant, we’ve been able to adopt a sweet little puppy, and I’ve been able to run with my nephews, pick them up, and carry them. I can vacuum the house without sweating profusely and feeling short of breath. I can put sheets on the bed without feeling like my lungs are going to explode. Doing the dishes and putting laundry in the washing machine is so easy now.
My husband, Justin, recently asked me what it feels like to breathe again, and my only reply was “normal.” I can’t explain it, but I just feel normal. I feel like this is how my body is supposed to feel.
My body has already forgotten what it was like previously. I struggle to remember all the times I was unable to do laundry because it was in our basement, got out of breath loading the dishwasher, or wore my oxygen in the shower.
My life has changed drastically and while it’s been a whirlwind learning everything post-transplant, I wouldn’t change it for anything!
Things have changed a lot for me over a super-short period of time, and I’m so grateful for the selfless act of my donor and their family! I know agreeing to a double-lung transplant isn’t the right choice for everyone, but I do know it was the right decision for me. I feel like I’ve gotten my chance to start over and I’m going to live every single second of it!
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