The longtime American Heart Association volunteer, who successfully underwent a heart transplant 16 years ago, is suffering from complications and needs a second heart transplant.
She’s been in a hospital in New York for nearly eight months now while her heart continues to deteriorate, making her condition more fragile.
“Even the doctors didn’t think it would take this long to get a heart,” Zimmerman said. “I’m running out of time.”
Zimmerman has cardiac allograft vasculopathy. The disease, also called transplant coronary artery disease, causes a narrowing of the arteries, making it difficult for the blood to pass through. It affects the smallest arteries first, closing off blood flow, but already moved to her major arteries, requiring two stents.
The condition has required a variety of medications to help her heart function and manage complications in other organs, including her kidneys. In some cases, such as the vasodilators that work to open the blood vessels, doctors have already reached the maximum dosage as her condition worsens.
As her heart struggles to get enough blood flow, pain has increased, requiring morphine. Doctors added a new medication to help her heart work more efficiently a few weeks ago. That has helped with the pain.
These days, she wears out quickly. She gets dizzy when standing at the sink more than a few minutes or walking short distances.
There’s no guarantee Zimmerman will get a new heart, although she needs one to survive. Each day, 21 people die while waiting for a transplant or within 30 days of being removed from the list due to a national shortage of organ donations, according to the United Network for Organ Sharing. Zimmerman is one of nearly 4,000 people waiting for a heart transplant in the United States. The median wait time for the highest priority patients awaiting a heart transplant is 79 days and Zimmerman, who falls in that category has waited nearly 8 months already.
During her time in the hospital, Zimmerman has worked to keep her spirits up, leaning heavily on her extensive support network. She’s received hundreds of letters and cards, plus supporting messages on her Facebook page. Friends and family have traveled from across the United States. A few close friends held a fundraiser to provide financial assistance for her mother and one of her three sons to come visit from New Orleans in July.
“It’s been really amazing that so many people have taken time to visit,” she said. “I’ve been able to talk with them and share the things I’ve really wanted to say.”
Although it’s difficult, Zimmerman exercises each day, using a stationary bike in her room and a pair of 7-pound weights to keep her body as strong as possible in preparation for transplant surgery and recovery. Even 15 to 20 minutes of the exercise bike is enough to exhaust her.
“I’ll have to take a three hour nap afterward,” she said.
In September, Zimmerman decided to teach herself to play guitar. She tried once before as a teenager, but quit then after only a few lessons.
“It was something I always regretted because you can play for yourself or others,” she said.
She practices each day and can play simple folk songs or camp favorites. Memorizing the music has been challenging.
“My memory isn’t as good these days,” she said. “I don’t just get physically tired from my heart not working as well, I get mentally tired too.”
She continues to create artwork using colored pencil and ink. She had to give up painting because she didn’t have the stamina to stand, or room in her private hospital room for supplies.
With a wheelchair, an oxygen tank and IV, Zimmerman tries to get out of her room two to three times a month, getting a few moments of fresh air when the weather is nice, or getting a view of the city from the 10th floor walkway bridging two of the hospital buildings.
“Anytime I can get off my floor, it feels like a field trip,” she said.
Zimmerman waited four months for her first heart transplant. She was 32 at the time, the mother of three young children.
A handful of times in the last few months, there have been hopefuls signs a donor heart may be available, only to fizzle after the match wasn’t ideal.
She’s cautious about being too hopeful; she knows it’ll be someone else’s tragedy for a heart to become available for her.
“I’m hopeful the right heart is coming,” she said. “I just don’t know when.”
Nine days after her first heart transplant, Zimmerman’s husband David died from an undiagnosed tear in his artery that occurred in a helicopter accident on his way to see her. She says being able to give others life by donating his organs helped her cope with her own grief.
Now, she waits.
With her condition getting more fragile, doctors decided earlier this month to widen the pool of donor hearts they would consider. Organ rejection is always a risk for transplant patients and her case is complicated by the fact that she already had one transplant.
“I’ve gone so long with this heart without major issues,” she said. “They told me it could be worth the risk because it would open up more potential donors.”
Even after all this time, Zimmerman believes it’s still difficult to help people understand there’s a chance she may not get a heart transplant in time.
“Of course you want to be positive, but you have to understand the reality that people die every day waiting for organs and it’s not because they didn’t really need one, or didn’t really want one or weren’t praying for one,” she said. “I have to prepare myself for both outcomes.”
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