Ginger Zimmerman, a longtime American Heart Association volunteer who successfully underwent a heart transplant 16 years ago, is suffering from complications and needs a second heart transplant. For more than three months, she’s been at a hospital in New York, first undergoing testing to qualify for a transplant and now waiting as her health steadily declines.
Even though the motivational speaker from Rochester, New York, has a better idea of what to expect this time, it’s still a rollercoaster, both physically and emotionally.
There’s the pain and fatigue that comes with living with a heart that’s failing, not to mention the other medical complications that follow. Daily blood draws and frequent IV changes have left her arms bruised. Medications to help one thing cause complications elsewhere, requiring a delicate balancing act as doctors adjust medications.
She believes the toughest part, though, is the waiting.
Ginger, 49, is one of nearly 4,000 people waiting for a heart transplant in the United States. An average of 18 people die each day waiting for transplants due to a national shortage of donated organs.
“I don’t let myself dwell on it so much, but I know what I’m facing very clearly and it’s going to be very complicated,” Ginger said.
Ginger’s status on the waiting list also has been complicated by her unusual case. Ginger has cardiac allograft vasculopathy. The disease – also called transplant coronary artery disease – causes a narrowing of the arteries, making it more difficult for blood to pass through. It affects the smallest arteries first, closing off blood flow, but has already moved to her major arteries, requiring two stents.
Ginger’s status was eventually approved to the waitlist as an exception because her symptoms differ from other heart transplants. Her case will be reviewed again to see if she can maintain her status Oct. 3.
A few weeks ago, a nurse came in to take blood after dinner, something that isn’t part of Ginger’s daily routine and a signal that a donor heart may be available.
“They can’t tell you anything, because they don’t want to get your hopes up, but I smiled at the nurse and said, ‘I know what this means,’” Ginger said.
When nothing happened after a few hours, Ginger realized she wasn’t a match.
“It’s nice to be that close, but I know there can be a lot of close calls,” she said.
She’s more careful about getting too excited, recalling the first time she learned a heart may be available when she was awaiting her first transplant, a process that happened three times before she successfully matched.
“I had gotten myself so psyched up, it was very disappointing when it didn’t work out,” she said.
Ginger’s excitement of finding a donor heart is also tempered by the fact that for a heart to be available, the donor would have had to experience an unexpected and tragic accident.
It’s an experience she knows all too well.
Just nine days after Ginger received her transplant, her husband David died from a tear in his artery that occurred in a helicopter accident on his way to see her. Ginger says the fact that David’s organs were able to save other lives helped her through her own grief.
To pass the time, Ginger tries to focus on keeping busy.
She’s active on social media, posting updates about her health and messages about the importance of organ donation and heart health on Facebook. She writes and works on her art work, some of which she’s donated for Go Red events.
She exercises, using resistance bands while lying in her hospital bed, or riding a stationary bike next to her hospital window.
“I pretend I’m racing the bikers outside,” she joked.
Because of her condition, her rides are limited to 5 to 8 minutes at a time, keeping her pace slow.
Visits from friends help pass the time, though she says it’s sometimes hard for them to understand the seriousness of her condition. While her health is declining, Ginger doesn’t look sick. It’s only after visitors see how much she struggles to catch her breath after the smallest exertion that they see how sick she is.
“People will ask me, ‘How long before you get your heart?’ and I have to explain to them that just because you need a heart doesn’t mean you’ll get one,” she said. “I’m optimistic, but I’m also realistic and fully understand how complicated this is.”
A recent visit from friends enabled Ginger, with her doctor’s permission, to have a brief picnic outside, her first trip outside of the hospital in more than two months.
“It was so wonderful to feel the sun and breeze on my skin,” she said of her half-hour getaway. “My senses were heightened and I loved it all, even the fumes from the cars on the street.”
Ginger’s condition has steadily worsened, making it harder to get around. When she arrived at the hospital April 27, she could walk three laps around the nurses’ station at a time. Now, she struggles to make the circuit once before tiring, even with an oxygen tank in tow.
Daily tasks such as showering leave her so exhausted, she has to nap afterward.
“Sometimes I have bad days, but I try to pull myself up and remind myself what I’m trying to accomplish,” Ginger said. “It’s a process you have to keep going through. You have to do your part to stay positive. The rest is out of your hands.”
While awaiting her first heart, Ginger focused on living for her three sons, the youngest was just 4 years old at the time. While more time with her sons as they start families of their own certainly motivates Ginger, she’s focusing on what more she wants to do with her own life.
“It’s easy to take for granted, but every day brings new hope and new opportunities,” Ginger said. “I think I still have a lot to offer and a lot of ideas for my life.”