I’ve been going through a second (Third? Fourth?) wave of grief for all things pre-pandemic. I am still mourning things that once brought me joy but are currently off-limits — rugby, concerts, being a wedding photographer, and date night out, to name a few things. I’m still hurting over shattered plans, like our long-overdue wedding reception and move from rainy Washington to a tropical paradise. I long for the comfort of knowing I could hop in the car or get on a plane and be hugging my parents by the end of the day.
I know all of these wounds will mend someday. I know scientists and doctors around the world are working tirelessly to develop and test vaccines and treatments for COVID-19. I know that one day I won’t have to worry that visiting home might be a death sentence for my mom.
It’s going to just take time — also effort, cooperation, and compassion — but definitely time.
At the suggestion of some fellow rare disease columnists, I am choosing to focus on happy things this week to give my mind a break from sadness and frustration.
It may seem odd, but some of my happiest memories are from my mom’s time in the hospital. Spending four months in the intensive care unit (ICU) was rough on all of us, don’t get me wrong. But there were moments that warmed my heart, inspired tears of joy, filled me with gratitude, and brought me closer to my family.
Without further ado, I present to you — in chronological order — my happiest IPF-to-transplant moments:
1. “Patient of the year.” My mom traveled to the ICU via medevac jet the day after Christmas. She had not even started the testing to get on the transplant waitlist when her health took a nosedive in mid-December. The first three weeks in the ICU were brutal. There was so much uncertainty and fear. Every moment was critical. There were nonstop interventions, procedures, and tests. And little rest. After a particularly rough couple of days, my mom’s positive attitude was unshaken.
On the other hand, one more piece of bad news sent me to the cafeteria where I had a meltdown on the phone with my husband. When I returned, my mom had a new friend — a stuffed giraffe, with a bright yellow, handmade sign pinned to its chest. The sign read, “Best ‘Patient’ of the Year 9/13 ICU 2019.” It was signed by seven of the people on her medical team. The giraffe, who she named Twiga (Swahili for “giraffe”), was her constant companion while she was in San Francisco.
2. Getting on the list. A person has to be healthy enough to survive the transplant and recovery in order to even be on the list. After 23 ICU days of nonstop acute care, lifesaving procedures, and testing, my mom was listed. I was with her when we got the news, and was privileged to be the one to consent for her.
4. Getting “the call.” When my mom got on the list, the doctors said that if they had a match that day, she could be headed to the operating room. Instead, it took two months before there was a match. It was a long wait, but thankfully, a mostly uneventful one.
5. News of a successful surgery. Sitting in the waiting room late at night, I received a text from the surgical team that said, “Out of procedure.” A doctor soon led us to her ICU recovery room. I peeked in at my mom, still sleeping, but breathing with new, healthy lungs. The next morning, we arrived and she was alert and excited to be alive. Her favorite physical therapists and respiratory therapist squad made a special trip to her new floor to take her for her first walk with new lungs.
6. Pulling the lines. In the two weeks that followed my mom’s transplant, all of the lines that had been keeping her alive were slowly disconnected. Four chest tubes, a nasogastric tube, IV lines, an arterial line, and tracheotomy had encumbered her for three months. Suddenly, she was free of the tethers.
7. Walking outside. Once my mom was truly on the mend after battling a Streptococcus mitis infection, we enjoyed walking together in Golden Gate Park. It was incredible to see her progress every day.
8. Going home. I was back in Washington already when my mom got to go home after six months in San Francisco, but she sent me a picture of her standing in the yard. In it, she has the ultimate expression of victorious joy. I still cry every time I look at it.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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