A Caregiver's Survival Guide: Finding Strength in the Search

by Lisa Emmott, NKDO Director of Operations

The courage to be vulnerable is a rare commodity. Vulnerability, often mistaken as a weakness, is not a surrender. It is a triumph demonstrating strength, self-awareness, and the ability to recognize when you need support to overcome challenges. 

I answered the call to donate a kidney for my husband Neil in 2017, until a surprise diagnosis altered my plans, and my life’s calling. During the kidney donor evaluation process, I learned that I am unable to donate due to a benign quirk in my renal arteries. 

Devastated at being denied the opportunity to donate and determined not to watch Neil deteriorate on the kidney waitlist, I launched a grassroots campaign to find another suitable living donor. It’s a challenging job that typically falls on the patient or family members. I quickly learned that having a willing donor is a far cry from having an approved donor.

After an 18-month-long emotional roller coaster with seven other donor candidates being ruled out, my husband was successfully transplanted in a paired kidney exchange that saved eight lives across the United States. 

Media stories after his transplant have focused on the success of our journey, but this tumultuous trek took a tremendous toll on me as the campaign navigator for Neil. 

Now, I’m fortunate to work in this field, educating and inspiring others going through the same daunting process. There was no roadmap for this journey, and I only wished someone had given me a crib sheet or Cliffs Notes on how to find a kidney. 

I learned a few things along the way: 

• Let them. People may gossip about the audacity you have to ask the world for a kidney. Let them talk. Your ray of sunshine is within reach, just outside your comfort zone.

• Put your own oxygen mask on first. You can’t pour from an empty cup. The age-old advice we have all heard ad nauseam. It’s difficult to prioritize self-care when you are caring for a sick husband, young children, and still showing up to work with a helpless haze in your eyes. 

• Keep calm and carry on. If you have children, they will be looking to you for guidance. Adopt the role of a flight attendant encountering a little bit of turbulence. It’s rocky and unsteady, but you’ll get through it. Moreover, your children will lean on you for cues about how to embrace the situation.

• Will it matter in five years? If not, don’t spend five minutes worrying about it. Let the dishes pile up. Laundry can wait. So can text messages and emails. 

• Feed your body and nourish your soul. Don’t forget to enjoy the little things in life. Get outside, gaze at nature, take a nap, try a new hobby. Be brave enough to suck at something new.  

• Your friends are your 911 call. Ask for help. People want to lend a hand; they just need to know how. Give them the opportunity to do so.

• Take it five minutes at a time. If it’s too overwhelming to get through the day, try to get through the next five minutes. If five minutes is too intimidating, focus on getting through one minute, and repeat that cycle all day long.  

• You’re stronger than you know. You don’t know how strong you can be until being strong is the only choice you have. Even flowers bloom in concrete. 

• There are no caregiver Olympics. No medals will be won, so don’t compare yourself to others. We are all just doing our best, even if the best you can do is not much.  

• Extend grace. The person in kidney failure probably doesn’t remember what it feels like to feel good. Everybody has bad days. Those who are sick happen to have a few more, and we must extend grace.

• Light will return. Above all, there will be a light at the end of the tunnel, but it may look different than you had imagined. May the embers of the hell you walked through light the way. 

Writing about our journey in the years after Neil’s transplant has been cathartic for me—a way to process everything we went through. I often find myself reading aloud words I wrote back then. They still strengthen me. 

Maybe they’ll inspire you too.

“I urge you to rise. Rise to whatever challenge is before you, even if the density of the air is so gray and oppressive you can’t see the back of your hand. Take the first step. The fog only dissipates if you allow the spark of your soul to gleam through the unknown. Light your torch and blaze your trail. Go forth like others’ lives depend on it, because they do.”