Petaluma woman ensures transplant patients have recovery space

For Denise Redeker, February is a month of heartfelt thanks.

First, February brings her birthday, an occasion she celebrated this year with hikes around Alpine Lake and Lake Lagunitas in Marin County. It was an easy 8 miles for the avid hiker, made possible by another significant February anniversary: Feb. 1, 2018, was the first morning she woke up to a second shot at life thanks to the new heart she received one day earlier.

“It was a blast being out in nature,” she said of her 59th birthday, a day that was not assured four years ago when she received a diagnosis so grim she began planning her own funeral. Her heart was failing and without a transplant she would probably die within a year, she was told.

“It means the world to me,” she said of that best Valentine ever. She was released from the hospital with her new heart on Valentine’s Day 2018.

“I’m so grateful for my donor and this second chance every single moment. I am so incredibly blessed by this gift of life and these bonus years. Every single day is a huge gift.”

At a time when lovers play Cupid, transplant recipients like Redeker are reminded of the importance of the heart, not just as a symbol of love but as a symbol of life. February is National Heart Month, a time to focus on heart health. In the U.S., heart disease is the leading cause of death, killing about 659,000 people a year.

While the number of transplants is on the rise — 2021 saw a record-setting 41,354 organ transplants in the U.S., including 3,817 heart transplants, according to United Network for Organ Sharing — the U.S. Department of Health and Human Services reports that 17 people die each day waiting for an organ.

There are many reasons, including that there are not enough donated organs to meet the demand. In the years since the donated heart of a 29-year-old man saved her life, Redeker has worked with groups like Donor Network West to educate people, including teens about ready to check that box on their first driver’s license application, about the need for organ donations.

But there is one impediment the longtime Petaluman is determined will not leave desperately ill heart patients in Northern California languishing on the waiting list — the lack of a safe and affordable place to convalesce near the transplant center in the weeks following the procedure.

Patients undergoing heart transplants are medically required to stay within a short radius of the hospital. When Redeker had her procedure, friends rallied around her and her husband, Jim, donating the funds to pay for an apartment 2 miles from the Kaiser Permanente transplant center in Santa Clara, where she received care after undergoing the procedure at Stanford.

Kaiser provided a housing allowance of $100 a day, but the apartment, in the middle of one of the costliest housing markets in the country, was $4,200 a month. She was there for three months, her release delayed by multiple complications and setbacks, from infection to organ rejection.

With help, the Redekers were able to manage the difficulties. But not all transplant recipients have the financial resources to pay for a second home for an extended period of time. Even if they do, Redeker said, they don’t have the strength or presence of mind to line up a temporary home while awaiting and recovering from a heart transplant.

After overhearing another heart patient lament that his transplant might be delayed over the need for housing, an incensed Redeker sprang into action.

She first partnered with Kaiser, under the umbrella of their nonprofit status, to hold a fundraiser in her backyard in October 2019 that brought in $12,000, enough to fully pay for not only that man’s post-transplant housing but for another person’s as well.

Then in 2020, she decided to scale up. She created the Heartfelt Help Foundation to find and pay for short-term apartments and hotel suites near Northern California’s major transplant centers.

In a little less than 18 months, the fledgling nonprofit has raised some $50,000, lifting the housing burden for 10 people. More patients, including a Guerneville man, are in the pipeline for help but are currently on waiting lists for hearts.

For her “heartfelt help” removing at least one major worry for recovering heart transplant patients, Redeker is the recipient of February’s North Bay Spirit Award. A joint project of The Press Democrat and Comcast, the award singles out volunteers who go all-in for a cause, often finding an enterprising way to fill a need in the community.

Many factors determine a person’s eligibility for a heart transplant and where they fall on the waiting list, including whether they have post-surgery support and a place to stay no more than 30 minutes from the transplant team.

Transplant patients need constant monitoring as they recuperate and adjust to the immunosuppressant drugs that prevent their bodies from rejecting the new heart, said Dr. Rami Turk, a cardiologist with Kaiser in Marin County who serves on Heartfelt Help Foundation’s board.

“If they don’t have the housing, and a lot of people don’t, they can’t have the heart,” Turk added. A lack of housing doesn’t mean they’ll be denied a heart per se, but it can lead to delays that for some people prove fatal, he said.

“We’re just here to make the money part go away.” Redeker stressed. “You shouldn’t have to start out this chapter in your life worrying about bankruptcy.”

A mentor

“I can’t thank her enough,” said Robert Collins, safety systems manager for Hawaiian Airlines who received housing assistance from the Heartfelt Help fund last year.

A resident of Hawaii, which has no transplant center, Collins had flown to Stanford for tests, never expecting he wouldn’t be coming home. He was immediately admitted to the hospital and put on a list for a heart transplant.

He reached out to Redeker, who locates the right housing for each patient’s needs, brokers discount rates and foots the bill through her foundation. She set up Collins in an Extended Stay hotel with a kitchen and enough room for his wife and four adult children to take turns staying with him to care for him.

“I was supposed to be there for four weeks. I think I was there for eight months,” he said. Redeker offered more than housing help. She also was an important mentor.

“Just to have someone who has gone through the process and was able to guide me and tell me what to expect and do — that to me was the great part,” he said.

“To have the housing and the mentoring was invaluable to my recovery,” he added. “Denise is very easy to speak with. I would term her a quiet confidant. You have what will appear to be a simple conversation, but after you finish and start to play it back you realize how much invaluable information she has given you.”

Theresa Rainey of Sacramento underwent her second heart transplant in October. The 34-year-old interior designer, who had her first transplant at 21, said the whole process was stressful for her family, who would be traveling back and forth from Sacramento to Kaiser Santa Clara to provide vital support.

Whatever could be done to relieve some pressure was welcome, she said.

Redeker, who heads the Heartfelt foundation but takes no salary, found a two-bedroom unit for Rainey and her family, drew up the paperwork and paid for everything not covered by insurance.

“It was nice to be able to have a space to see people. It helps mentally with your recovery and makes it a little bit more homey,” Rainey said of the condo in Santa Clara that Redeker arranged for her and her two main caretakers — her mother and her sister.

Redeker, Rainey added, brings an understanding, empathy and optimism to her work, based on her firsthand experience.

“She really cares. She was always checking in with me and my family, especially when I was in the hospital and recovery,” Rainey said. “Even now she checks in to see how I’m doing and if there is anything she can do or if there is anything I want to talk about.”

Ripple effect

Redeker discovered her own heart problems after giving birth to her son Matthew when she was 29.

Her father-in-law, a renowned liver specialist, stopped by for a visit while she was in the hospital, glanced at the EKG monitor she was hooked up to and asked for a cardiologist to be called. Redeker was diagnosed with cardiomyopathy, an infection that permanently damages the heart. Doctors also suspected she was born with a genetic heart problem.

Told it was too risky to have more children, she threw herself into parenting her only child while working as a marketing manager for an arbitration and media managing firm in Los Angeles. When her family moved to Petaluma, she did risk analysis for insurance companies and then became the ultimate soccer mom/classroom volunteer.

“I didn’t want to regret anything,” she recalled. “I didn’t want to look back and say, ‘if only.’”

But when Matthew was in junior high, a routine medical appointment showed her heart was failing. An implanted pacemaker and defibrillator bought her more years, and Redeker went about her life somewhat in denial, she admitted.

Then in December 2017, her cardiologist gave her bad news: “We’ve done everything medically we can do for you. Without a transplant you’ve probably got a year to live,” she remembered hearing.

“I planned my funeral,” Redeker said. “I called my pastor at New Life Christian Fellowship. And I called my counselor and said this is what I’d like for my memorial service. I called friends and said these are the songs I want you to sing.”

But she didn’t lose faith.

“I thought one of two things were going to happen — either they were going to stabilize me and I would go back to life as I was living it in this weird congestive heart failure land, or I would get a transplant and it would be fine.”

The following month she suffered a rapid uncontrolled heartbeat her pacemaker and defibrillator couldn’t handle and found herself in the hospital awaiting a heart transplant. It came three weeks later. She was 55.

The post-transplant period was difficult. She underwent three open-heart surgeries. Between clinical appointments, medication adjustments, biopsies and more, “There is no bandwidth to worry about rent,” she said.

Redeker wants others to have the comfort she did her in her two-bedroom apartment with a kitchen for cooking, something she loves to do.

“We want people to feel they’re in a place with people that care about them, in a place that feels like home and a place where they can be themselves in their bubble of people and still be close to the hospital,” she said.

The foundation is a family affair. Husband Jim, just retired from banking, is an adviser. An outdoorsman, he refurbishes old canoes and kayaks and sells them to make money for the foundation. Son Matthew, with a background in finance, is chief financial officer.

On March 20, Heartfelt Help is planning a block party at The Block in Petaluma (20 Grey St.), with live music, food trucks, drinks and a raffle for prizes like winery tours and a private baking class taught by an award -winning pastry chef.

Redeker said her “Capital D Dreams” for Heartfelt Help include building apartments for transplant patients near the Bay Area’s transplant center in Silicon Valley and San Francisco.

In the meantime she’s focusing on growing slow and steady, mentoring other new heart transplant recipients and living each day fully. She and Jim have a small RV for exploring. It bears the Heartfelt Help sign, in hopes of sparking conversations at campgrounds.

“There is a mixed bag of emotions especially around my transplant anniversary,” said Redeker, still aware she faces a day-to-day fight for survival and the clock is ticking. Heart transplants give recipients an additional 10 to 15 years of life, on average.

“It’s not lost on you that this anniversary of your transplant is also around the day another family got some very bad news,” Redeker said.

“They were going to pass anyway, but the last pebble that rippled out from their (the donor’s) pond was the gift of saying yes. That has them leaving a legacy of hope that lasts through me and that in turn ripples through everybody we’re able to affect.”

You can reach Staff Writer Meg McConahey at meg.mcconahey@pressdemocrat.com.