During the 18 months I spent waiting for a double-lung transplant, I researched everything I could about the process. I asked post-transplant patients about the pain of the surgery, waking up, the ventilator, recovery, medication -- anything I could think of. I also watched YouTube videos and read blogs, absorbing every bit of information possible. But a double-lung transplant is not something you can ever completely prepare for.
You Are Your Strongest Advocate -- Even Non-verbally
The first thing I remember after waking up from surgery was my inability to talk. I knew that I would wake up connected to a ventilator and that the best way to communicate would be through writing. Although many friends who have had a transplant said that the first couple days would be a blur, a result of pain medications and anesthesia, I was aware of everything. I asked questions about the surgery, my new lungs, any complications and what medications I was on. I even reminded my nurses about my insulin and other essential medications. I learned that I could still be my strongest advocate without even speaking.
Breathing Isn't Always Automatic
The hardest, most beautiful fight I ever had was coming off the ventilator. It was scary, difficult and most of all, surprising. I imagined my first breaths after extubation would be quick. Actually, it takes incredible mental and physical discipline. The ventilator begins at 100 percent assistance, basically breathing for you, and decreases as you fight for each independent breath. With each decrease, it immediately required me to push harder to become mentally stronger.
As I spent hours thinking about and forcing every inhalation and exhalation, the only thing that kept me alive was my mental drive and the people I was fighting for. I told myself every step would be forward. I was off the ventilator 6 hours after beginning the process.
Taking a Deep Breath Takes Practice
I often imagined waking up from surgery and magically taking my first deep, easy breath in years. Prior to the transplant, my lung function was so low that no oxygen reached the lower lobes of my lungs and my respiratory rate had increased drastically. This is because low lung function forces people with cystic fibrosis to use the top respiratory muscles and causes the bottom muscles to atrophy. On day 13 post-transplant, a buildup of carbon dioxide (CO2) left me unresponsive and put me back in the hospital. It took more than three weeks to re-learn how to inhale fully. The moment I felt my bottom lobes expand for the first time was shocking, magical and a relief.
Transplant Has Invisible Effects
Anxiety consumed me for weeks after surgery. I had been independent and being out of control scared me. I needed to know everything, but every hour was focused on survival. Nobody could anticipate the challenges. Both lungs collapsed many times. Because it was too painful to clear my lungs through coughing, mucus and natural bleeding from surgery needed to be cleared. Although my care team handled every challenge, the anxiety increased. It turns out the anxiety was caused by the high doses of medications and the stress of surgery. But I had to learn to overcome these reactions by staying focused on the end goal of being healthy.
Hope and Happiness Keep You Looking Forward
Every day, I experienced new energy, a new purpose in life and the desire to be the best person I could -- and can -- be. I felt a euphoria that kept me believing there was nothing my family and I couldn't overcome.
The self-confidence overwhelmed me after years of feeling prisoner to CF.
I was discharged from the hospital 11 days after surgery, but recovery was just starting. I had to re-teach myself to swallow and shower and learn what each medication treated. I now follow a strict routine. Prior to my transplant, I took medications twice a day. I now take medications on a timed schedule. I attend clinic every two weeks (down from twice a week). I wake at 5 a.m. for clinic, where I do blood tests, chest X-rays and pulmonary function tests. The testing is critical for managing my immunosuppressant, anti-rejection and anticoagulant medications, and to see how my lungs are progressing.
I have had many setbacks since my transplant, as is typical in the first year of recovery. Each hospitalization has been longer and more intense and even more life or death than before the transplant. My health has its ups and downs, but in the last month I have been making great strides. It is always necessary to remember that it's still a roller coaster, but the roller coaster will stop. And when it does, the rest of the world will be waiting.
To read Part 1, My Experience Waiting and Getting the Transplant Call, click here.
