My Hardest Days as My Mom’s Caregiver

Two weeks after my mom, Holly’s, double-lung transplant, she was discharged from the hospital. Although she was weak, she was walking, talking, eating, and, best of all, breathing on her own. After three months on a ventilator, the transplant brought her back to life.

We took my mom “home” to our rented ground-floor flat. With a walker, and two caregivers flanking her, she climbed the two half-stairs to the door. Once inside, she found the closest chair and sat to recover.

My dad, Ed, Aunt Shari, and I jumped for joy, wept with relief, and got to work as caregivers. The hard part was over, we thought. We had survived.

My mom navigated the flat with her walker and slowly regained some strength. Every day we took a walk outside. After three months in the intensive care unit, seeing the sky and breathing fresh air was a treat. We were fortunate to find a rental home on a rare, blessed, flat street in San Fransisco’s Cole Valley.

The walks were short and slow, but each day we went a little farther. One day, we made it to the rose bush, the next we went to the stoop of the pink house, and so on. After a week and a half, she had walked the full length of the block and back.

The next day, she could not. The day after that was worse.

She complained of chest pain — to be expected with a fresh foot-long surgical incision, broken sternum, and two newly recycled lungs. She had occasional shortness of breath, and her heart rate was unmeasurable due to atrial fibrillation (AFib), a common side effect of lung transplants.

We checked vitals multiple times each day and she never had a fever, was not gaining or losing weight, and didn’t have high blood pressure. The sudden loss of stamina concerned me, as did the AFib, but the data we collected were not setting off any alarms.

One night my mom headed to bed on her own and a few minutes later called out in fear. “I can’t slow my breathing. I can’t catch my breath,” she said when my aunt Shari and I rushed into the room. Lying down made it hard to breathe. We helped her sit up and checked vitals again. Everything was normal besides her heart rate.

I called the emergency transplant line and woke up a poor doctor who told me that if I was worried enough to call, we should head to the emergency room. The only problem was that my dad had taken our only car to tend to chores at home for a few days. We decided we would try to make it through the night. I had already arranged a ride to the lab in the morning, which was across the street from the emergency room.

At 8 a.m. we loaded into an Uber bound for the lab. When my mom tried to get out of the Prius and step up on the curb, she collapsed. I was prepared for this and caught her as her knees buckled. I pulled her up onto the sidewalk and got her safely seated in a wheelchair. I made an executive decision and set a course for the ER.

After 19 hours in limbo, she was admitted to treat a complicated bacterial infection. Streptococcus mitis had been a passenger in her donated lungs. It had been silently taking over her immunocompromised body.

Thus began the worst part of the entire idiopathic pulmonary fibrosis and transplant experience. The ER doctors responded to my mom’s complaints of chest pain by offering her fentanyl, a powerful narcotic.

My mom’s pain vanished. She hallucinated that she had food in her bed. She kept removing the covers looking for, to name a few things, bacon and eggs, spaghetti and meatballs, and “a bunch of madeleine cookies on a string.” We had a good laugh at this, but it didn’t take long for narcotic side effects to stop being funny. Fun food fantasies stopped and were replaced with mood swings, apathy, and memory loss.

Not only did the drugs change her personality, they also depressed her respiratory system and further suppressed her immune system. I knew this from my time working at a pain management clinic and wondered if the transplant team knew that oxycontin had ended up in her medication regimen. Coming from the ER, could it have slipped through the cracks?

I voiced my concerns to a doctor I’d grown close to and she validated them. The opioids were discontinued, but it took a few days before my mom seemed like herself.

Facing the terror of the infection with the added stress of disturbing opioid side effects made that my hardest week as a caregiver. I truly had to use my courage to care.

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