Karin Hehenberger: Paying The Gift Of Life Forward

The last time “06880” checked in with Karin Hehenberger, it was January 2021.

The Westporter – a native of Sweden who earned a Ph.D. there, did post-doctoral work at Harvard, then joined a hedge fund — had endured extremely tough times.

As a teenager she was diagnosed with Type 1 diabetes. Over the next 20 years Karin had eye problems. Her kidneys and pancreas failed. A pacemaker was installed in her heart.

Karin Hehenberger

Her father Michael — an IBM executive who had moved to Westport with his wife and Karin’s younger sister Anna, when she was in high school — donated a kidney. Karin’s eyes were treated with a product she’d worked on in her healthcare days. Her vision was saved; she did not dialysis.

On January 2, 2010, she got another gift: a pancreas transplant.

As she recovered, Karin thought about her career.

She had never connected with any other diabetic. “Patients need patients just as much as much as we need doctors,” she realized.

And, she says, “even though I was so involved with innovation and technology, I’d never allowed my own experience to be part of the assessment. I didn’t want to think I was biased.”

Gradually, Karin says, “I understood that patients can be innovators. We know the problems. We can have solutions.”

That set off a light bulb in her head. In 2014 she started Lyfebulb. The name combines that idea of innovation with the optimism of “life.” (The “Y” resembles a light bulb — and the logo colors are the same as Sweden’s.)

Lyfebulb’s mission is to “reduce the burden of living with chronic
disease through the power of the patient.”

Through digital solutions, innovation challenges, events, panel discussions, workshops, social media, newsletters and blogs, her company works with patients in 11 disease areas: transplantation, diabetes, cancer, multiple sclerosis, chronic kidney disease, IBD, migraine, substance use disorders, mental health, psoriasis and chronic cough.

Life was good. But 3 years ago, Karin’s kidney began to decline.

A combination of factors — COVID; the stress of her marriage breaking down; juggling work as an entrepreneur with the demands of single motherhood; the effects of immunosuppressive drugs — led to more medical issues.

Karin Hehenberger and her daughter.

She was always fatigued, and extremely sensitive to cold. She underwent several surgeries for skin cancer. She had dental abscesses, and a hip replacement.

Last summer Karin’s father asked her to speak to her middle sister, Lisa, who had previously offered to donate a kidney.

She quickly said yes. A business school professor in Barcelona, she arranged to take time off work, and for childcare.

However, a pre-surgery angiogram caused several complications for Karin. Her kidney function plummeted to 5%. She underwent 9 harrowing sessions of dialysis.

Through it all, Karin says, her support system – her family and many Westport friends — kicked in.

In 2009, Karin’s father had given her the gift of life. This past April, he sister did the same.

The transplant was successful. While Karin was still on the operating table, Lisa’s kidney began functioning in its new body.

“So what am I going to do with this gift?” Karin asks.

She answers her own question:

I will live every day to the fullest, which doesn’t mean I will do as much as I can every day, but I will measure myself and take care of my new ‘baby’ so that it can serve me as long as possible.

I will take care of my body by eating right, sleeping enough, exercising regularly and practicing mental health through meditation and mindfulness. I will be kind to myself when I feel tired, and I will be respectful to others and always keep in mind that the exterior of someone is not always a reflection of their inner self. I will cherish my friends who have stood by me through the hardship of kidney failure and dialysis.

I will continue to serve patients through my work. I will partner with great companies and leaders in academia to promote innovation. I will provide opportunities for my team to both grow professionally while also taking care of their families.

Above all, my life is dedicated to the family who saved me, and my own little family, whom I am raising with all of my heart. I appreciate each of my sisters, parents, brothers in law, nieces and nephews, and especially my daughter.

To my daughter, I want to show that life may not be a walk in the park – you need to fight for what you want – but it is beautiful. I want her to know that she will always be taken care of, and endlessly loved by, her Mamma.

Karin Hehenberger, shortly after her kidney transplant.

She’s also doing something else.

Karin is trying to raise awareness about the importance of organ donation: both asking, and offering. Close to 20 people on the transplant list die each day in the US, while waiting for a kidney.

“Many people are hesitant — or don’t have the courage — to ask family members to consider donating,” she says.

Both her father and sister underwent rigorous evaluations to ensure they’d be okay. Her sister recovered quickly. And — 14 years after donating his own kidney — her 78-year-old father is now at the K2 base camp, reading to climb that challenging mountain.

She knows she is lucky. Both her father and sister could take time off work to help. Karin understands that many relatives do not have that luxury. And in some minority communities there is skepticism toward healthcare, along with high incidences of diseases like hypertension and diabetes that limit the pool of potential donors.

Karin also advocates for research into better post-transplant drugs (they cause severe side effects like infections and cancer; in her case, they caused scarring in her transplanted kidney that led to its eventual failure).

She is also addressing gaps in the healthcare system, which forces transplant patients to navigate long-term — on their own — the drugs they take, the preventative and therapeutic visits to specialists needed, and their mental health.

Karin’s Lyfebulb platform will continue to connect people, inspire change and impact lives. The transplant page, connecting recipients, care partners, donors, donor families and transplantation experts, is particularly active.

Or, you could say, filled with new life.

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