Unexpect the Expected: What I Learned After My Lung Transplant

I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.

Oct. 6, 2016 | 5 min read
Caleigh Haber

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.

Waking up with new lungs meant every birthday wish I've made in the last 4 years had come true.


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.

One day post-transplant. I stood up and felt my body stretch out to it's maximum capacity. The feeling of my nerves stretch over my chest was painful, however I was overjoyed to feel the pain as I knew it meant I had overcome so much already. I was breathing, speaking and onto the next step of my recovery.

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.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Lung Transplantation

Born and raised along the California coast, Caleigh was diagnosed at birth with cystic fibrosis. Growing up, Caleigh stayed healthy through sports and social activities. She later moved to San Francisco to attend culinary school. Despite her best efforts to balance health and happiness, she found herself with end-stage lung disease, frequently hospitalized and needing a double lung transplant. After receiving new lungs, she lives a successful life achieving new goals every day -- including chronicling her journey on her blog Fight2Breathe, and beginning her own legacy through her foundation. 

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