Lansing heart recipient saves lives by telling her story of hope

Heart transplant recipient Rachel Kuntzsch

Life was “exceedingly rich” for Rachel Kuntzsch when it nearly slipped into darkness forever.

She was happy, 44 and her Lansing consulting firm was thriving. Rachel was a strong, vibrant mom, friend, daughter and wife. Time spent with her college-sweetheart husband, David, and their two boys involved travel, sports, kayaks and long hikes on beautiful trails.

Everything changed over the course of just a few days in November 2018. Rachel became noticeably winded while doing seemingly simple activities.

“I was doing yoga and having a hard time catching my breath. I thought I was worn down,” she said. “Over the course of a weekend, I couldn’t lay down without gasping for air.”

Rachel went for an exam the next day and her EKG results pointed to real trouble: “They said, ‘We’re going to take you to the hospital.’ It was lights and sirens and it made no sense to me.”

A diagnosis with just one cure

Rachel spent six days in the ICU without answers before she was transferred to Michigan Medicine in Ann Arbor. A heart biopsy revealed she had giant cell myocarditis, a fatal diagnosis.

Rachel was dying and only a transplant would save her life.

She was placed on a heart/lung bypass machine to sustain her life until a match could be found and her name was added to the national transplant waiting list. Her status was 1A, a category indicating extreme urgency.

“I couldn’t hold my own head up. I felt so sick that it crossed my mind that it would feel better to die. But it didn’t last. I wasn’t ready to go,” she said.

Just as Rachel was in the fight of her life, a 33-year-old man was losing his. The next news for Rachel and her family came just 24 hours after her name appeared on the national waiting list.

That generous man’s heart was a match for Rachel and it was on its way to the Ann Arbor transplant center on Thanksgiving Day.

Rachel Kuntzsch in an open field in Scotland, wearing a U of M t-shirtNew heart and new life

After a six-hour surgery, Rachel woke up immensely grateful, feeling better – and with the will to work hard to rebuild her strength and the life she once knew.

That donor’s gift saved Rachel.

“He allowed me to watch my boys grow up, celebrate birthdays, and see the moon rise,” she said. “I appreciate all of these things because I almost didn’t get them.

“I have an awareness that anything can happen at any time. I was almost an organ donor. Instead, I was a recipient.”

Rachel has spent hours since then using her community and statewide platform to talk about her experience in hopes of motivating Michigan residents to join the Michigan Organ Donor Registry.

Giving back because she can

She also has worked tirelessly with Gift of Life to educate legislators in Washington, D.C., and recruit ambassadors and workplace partners in Michigan. Rachel was at the state Capitol this year in support of the now-passed Check Your Heart Act as it worked its way through the House and Senate before reaching Gov. Gretchen Whitmer’s desk.

The law allowing Michigan tax filers to join the Donor Registry on their state income tax forms next year was signed into law by Gov. Gretchen Whitmer in July.

“Rachel has been an undeniable force in Michigan’s donation and transplant community,” said Dorrie Dils, president and CEO of Gift of Life, the nation’s 10th-largest organ donation program. “Her willingness to share her frightening and inspiring story has undoubtedly moved people to take the next step and sign up. We’re beyond grateful to her and so thankful a generous donor saved her life.”

Rachel was recognized in 2023 as the first recipient of Gift of Life’s Check Your Heart Champion award for her relentless drive to promote donation and transplantation at the highest level.

“I was so lucky. There are so, so many people waiting needlessly,” Rachel said. “I have a voice and there’s something I can help do about it. So why wouldn’t I?”

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