I was finally at that mature stage in life when you go to beer festivals with your mother.
(Oh, that’s not a thing?)
On a windy fall day in October 2016, my mom, Diana, and I dressed up as pirates and got in line with a bunch of other weirdos for the Lagunitas Brewing Company Beer Circus in Petaluma, California. We tasted beers we didn’t know existed. We saw things we can’t unsee. My mom talked to strangers, which I love watching her do. We laughed and probably peed a little bit from it.
That weekend is the last memory I have of going out with my mom while she could still breathe freely on her own. Her health started to take a turn in 2017, and in early 2018, she had major surgery to remove a fist-sized tumor from her thoracic spine. Around that time, doctors identified a respiratory disease that would later require an even more invasive surgery.
My mom was diagnosed with idiopathic pulmonary fibrosis (IPF), which was narrowed down to fibrotic nonspecific interstitial pneumonia, an even rarer lung disease. Getting a diagnosis that contained a word meaning “unknown cause” wasn’t exactly “the answer” we were looking for. The doctors immediately sent for a couple of tanks and a big, blue, plug-in oxygen machine to give her still-healthy heart a much-needed break from overcompensating.
The University of California, San Francisco was about to start a trial in which fibrosis patients were given green tea pills. Some studies suggest that green tea extract can somehow break up the scar tissue in the lungs. My mom agreed to the trial, and we were hopeful. I started drinking green tea every day in the spirit of camaraderie. Ultimately, the trials resulted in some improvement, but they were in the initial stages, and my mom needed a faster solution. That solution was a lung transplant.
A patient must jump through many hoops to be placed on a transplant list. Diet restrictions, mental state, and family support must all be in check, along with numerous medical procedures and tests. I had to sign a contract to promise I would be there to care for my mom after surgery. We were ready for it — for my mom to get better. And then we waited.
Meanwhile, my mom began to turn gray. Not just her hair, which was already grayish, anyway. My mom was a spunky, fierce, loud, and energetic 60-year-old social butterfly before her diagnosis. I had never seen anyone deteriorate before my very eyes like that. She shrank. She lost weight. Her skin lost its golden-bronze glow and turned the color of a small, gray mouse. This is what dying looks like, I thought. I felt survivor’s guilt already. I deeply pitied my dad for losing whatever image of retirement with her he had been dreaming of for years.
Now that I think of it, I didn’t really pity my mom. She’s always been the strongest person I’ve known. She was determined from a young age never to let anyone pity her. She’d been taking care of herself since the only person she could trust, her grandmother, died when she was 14.
In the brief moments when she let herself break down and cry on the phone to me, so sick of dying, so done with waiting for more life to be given to her, I did feel a pang in my chest. But, despite the name of this column, those times are rare. (Am I an emotionally supportive daughter, or am I a supportive daughter who is emotional? We may never know.)
Being on a transplant list feels like being at the hands of a puppeteer. Up the list, down the list, staying put for months.
Seven months in, my mom’s condition placed her near the top, and the hospital finally had one healthy, petite lung for her. The other one was for someone else. One good lung was better than two bad ones, so we went for it last May, two months after the pandemic lockdown began.
Typically, I have a hard time making decisions (what is the cost-benefit analysis here?), but doing whatever needed to be done to help my mom was an inherent duty I’d never felt before. I drove from my home in Truckee, California, to San Francisco, and geared up to be her secondary caregiver alongside my dad.
I hope you’ll continue to follow along to hear about that month-long stay in San Francisco during the COVID-19 pandemic, and what it’s like to care for someone 200 miles away when visiting them could be deadly.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?