Getting on ‘The List’: The First Second Chance in My Mom’s IPF Journey

This year, the central focus of my life has been my mom needing — and then receiving — a double-lung transplant. I’ve met a lot of people whose lives are also revolving around a lung transplant: patients and family members, pre- and post-transplant. Since my sphere is full of these stories now, I often forget how out of the ordinary they are. Only about 2,500 lung transplants were performed in the United States last year.

There are roughly 20 diseases/conditions whose ultimate treatment is a lung transplant. Even if you have one of these conditions, a lot has to happen before you end up with someone else’s lungs in your body. These include:

1. Getting sick.
2. Seeing lung disease/transplant specialists.
3. Exhausting all other treatment options.
4. Deciding if organ transplant is the right choice for you.
5. Jumping through approximately 1 million hoops, including but not limited to the following tests: pulmonary function, CT scans, chest X-rays, bloodwork, cancer screenings, skin cancer exam, colonoscopy, heart catheterization, and echocardiogram.
6. Going through a social-psychological evaluation to prove that you understand what you are getting into, are mentally capable and emotionally stable enough to handle it, and will have a support system to help you.
7. Being a healthy weight and be a physiologically appropriate age.
8. Agreeing that you understand and will be compliant with all the rules and lifestyle changes necessary to make a transplant successful.
9. Getting on “The List.”
10. Waiting for a donor who matches your blood type, body size, and antibodies.
11. Getting the call.
12. Accepting the donation and getting prepped for surgery immediately.

If you’re familiar with my column, you know that my mom was in the ICU for two and a half months before her transplant. Within 24 hours of her arrival at the University of California, San Francisco (UCSF) Medical Center, we knew that she would be there until either she got new lungs or her IPF ran its course.

Of the aforementioned steps, she hadn’t even started number five — the testing — when she was flown on medevac to UCSF. And the scariest part was that she was, at that time, not healthy enough to get on the list. Her lung function was so bad that her heart was exhausted and working at half power. She had arrhythmias and flutters that were so erratic you could not possibly predict or even measure her heart rate. There were other issues that stemmed from being unable to breathe, but the short version is that it was just all-around not good.

The first three weeks in the ICU were a desperate, around-the-clock effort to recover her cardiopulmonary health, as well as pass all the tests needed to get into the United Network for Organ Sharing (UNOS), also known as The List.

It took 23 days, a tracheostomy, heart catheterization, three echocardiograms, two colonoscopy preps (and zero actual colonoscopies, I must add), lots of walks around the ICU, pep talks, some tears, some prayers, lip-reading, Scrabble games, and foot rubs to get there, but we finally had the approval of the lead surgeon.

My mom was getting situated after a walk when her physical therapist pulled me aside. She tilted her head toward a nearby computer bank where a posse of doctors was gathered. I recognized all but one of them. She whispered, “That’s the head honcho. They don’t bother to summon her unless they’re pretty sure she’ll say yes.” Did that mean what I thought it meant? “I’m pretty sure they’re talking about your mom.”

Within an hour, our nurse’s phone rang. “It’s for you.” A UNOS representative was on the other end. A moment later, three of the transplant team doctors who had been overseeing my mom’s care showed up. We put the representative on speakerphone and the doctors closed the sliding door to my mom’s tiny ICU room.

“Your last echo looked good,” the doctor said. “Your heart is getting stronger. Doctor Kukreja has determined that you’re a good candidate. We’re going to go ahead and list you right now, as soon as you provide consent to UNOS. Congratulations!”

These three amazing women who had been working tirelessly to save my mom’s life had just delivered the best news I have ever heard. The room was all smiles. I took the phone and spoke for my mom (she couldn’t speak with the trach). “Yes. Yes. She consents!”

My mom and I cried in relief and joy. “We did it,” I said.

“You did it. You helped me through this,” she mouthed. She picked up a calendar that I’d tried to hide under some junk on her bedside table. “I get to use this.” That said it all.

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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.