How I Prepared for ‘the Call’ as a Caregiver

The day after my mom, Holly, got on the transplant list, the doctor who had delivered the news said, “You’re at the top of the list. If we got lungs for you today, would you be ready?” It was scary to consider what stood between my mom and new lungs, but every day with idiopathic pulmonary fibrosis was more terrifying than surgery. We had hoped for this outcome for a long time and were as ready as we could be.

Although my mom had a high lung allocation score, no one could predict when “the call” would come. It might be days, weeks, or months — or it might not come at all.

I wanted to be with my mom during her wait — to watch her take her last breaths with diseased lungs, and then see her take her first miraculous breaths with healthy ones. I wanted to walk with her as she left for the operating room. But as she was improving a little bit every day, and it no longer seemed as if any moment could become an emergency, I started to feel the tug of responsibilities elsewhere. Knowing that my mom was listed and stable, I decided to return home. I would have gladly gotten back on a plane the second I landed at Seattle–Tacoma Airport if a donor match had been found during my flight.

As soon as I got home, I began to prepare to leave again. I laundered my clothes — even the “clean” ones in my closet, because I was afraid of mold — and packed a suitcase. I made a list of everything I wanted to take that wasn’t already packed. A note with my parents’ Alaska Airlines account information sat by my laptop so that I could book a direct flight as soon as I received the call. I spent my first days back in Washington within 30 minutes of my house, and never more than an arm’s length from my phone.

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As the weeks passed, I relaxed a little. I kept my phone nearby and at full volume, but I began to venture out farther and participate in more of my usual activities. I still didn’t go anywhere without cell service or drive out of town for events, but I was trying to live a semi-normal life while in pre-transplant limbo.

I began driving for a delivery service so that I could make some money while I waited without having to commit to a job that I would have to leave without notice. I was contributing a little financially, as well as taking care of our home and animals. So, I never really felt like I was in the wrong place. Besides, it was nice to have the support of my husband, Jonny.

Finally, the day came. I’m used to getting too-early phone calls from spammers, but when through a sleepy haze I saw my aunt Shari’s name on the screen, I became immediately alert. She and I are both night owls, so while an 11 p.m. phone call would not have surprised me, at 8 a.m. I knew it was important before I picked up.

“We have lungs,” she said. I cried and shook — anticipation, excitement, gratitude, and fear came all at once. We talked for a minute, and then my phone beeped. My dad was calling. I answered. “We have a donor. Everything looks good so far. I was just on the phone with Scott [my mom’s twin]. He will try to get there before she goes to the OR. I’m at home but will get on the road soon.” We shared our excitement and pretended we weren’t afraid. But while we were both terrified, we were also ready.

When I hung up, I saw that I had received a text from my mom at 7:11 a.m. It read: “Good morning, my darling heart <3 <3 <3 <3 <3.” I replied, “Good morning, my mommy heart. Are you ready?! 😀 Can you chat?” I tried to video call her, but she was already doing preoperative rigmarole. We texted on and off until she went for surgery, both excited and anxious, but trying to stay composed.

I bought my flight right away and had several hours to kill before I had to leave for the airport. Jonny left work to be with me and arrived at the house as I was gathering the remaining items on my packing list. We hugged and happy-danced, I cried some more, and then we took our dog for a walk to burn off our nervous energy. The sun was brighter than usual. It was unseasonably warm. It felt like the long winter was over.

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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.