Hoonah woman gets a new heart

Transplant comes after 5 surgeries, 3-year wait

Posted: Thursday, August 08, 2002

Marilyn Hillman's new heart beats so strongly it kept her awake the first few nights after her heart transplant surgery.

Her old heart, the one that had been through five open-heart surgeries, had a soft, swishing sound, like a washing machine, she said.

"It was barely pumping," said the 45-year-old heart transplant patient from Hoonah. But the new one she received June 11 pounds steadily.

"When I first woke up from my surgery I could hear my heart beating everywhere in my body and I could breath," said Hillman, who is recovering in Seattle. "I could feel my heartbeat all the way in my fingertips. I couldn't sleep for a few days because I couldn't get used to the beat."

Barely a month after the surgery at the University of Washington Medical Center in Seattle, Hillman is walking and climbing stairs she would have struggled with before.

"She did a flight of stairs without stopping and she wasn't breathing hard. I've never seen that," said her husband, John Hillman. "Before (the transplant) she could never do that. She could go halfway, stop and take a break. ... Today she went straight up, looked at me and smiled."

Hillman's heart problems all stem from a bout of rheumatic fever when she was 13. The illness damaged her mitral valve, which separates the left upper and lower chambers of the heart.

She had her first open-heart surgery when she was 17, to replace the mitral valve with a pig valve.

"Since I was so young they wanted me to live as much a normal life (as possible) because with a pig valve you can still have kids, (but) with a mechanical valve you have to be on blood thinners," Hillman said. "That's why I call my daughter my miracle baby, because she's the only one."

Hillman's daughter, Krissy, was 4 when the first pig valve had to be replaced. It took two attempts for surgeons in San Francisco to replace it with another pig valve, but within six months Marilyn's body rejected the new valve. This time it was replaced with a mechanical valve, called a "Star Edwards Valve."

In 1995, a tear formed around the Star Edwards Valve and Hillman was medevaced to Virginia Mason Medical Center in Seattle. She underwent her fifth surgery, but three years later the valve began leaking again. By then her heart had taken all it could and she was added to the list of people waiting for a heart transplant.

For another three years she waited, as No. 3 on the list, but she didn't expect to get a new heart when she was medevaced to the University of Washington Medical Center in May.

Her blood pressure had dropped dangerously low, to 60/40, and her body was swelling with retained fluid. After a few weeks in Seattle her kidneys started to shut down, her lungs were saturated with fluid, and her liver was engorged because of the leakage in her heart. She was connected to about 15 tubes and IVs and moved to No. 1 on the transplant list.

"It was actually pretty scary there," said John Hillman.

Then a heart came through.

The 11-hour surgery was more difficult than most heart transplants because Marilyn's heart had attached itself to her rib cage in two places.

"The doctor came out while she was in surgery, about hour five I think it was, and let us know this was probably one of the riskiest surgeries he'd ever done," said John Hillman. "Her heart was so enlarged, probably four times the size a heart normally should have been."

But Marilyn's tough. She's apparently died twice already, which may be why she's so determined to live.

Her heart stopped during her first surgery, when she was 17, and again during her fourth surgery.

"I was by a nurses station and I could see all these screens where they monitor your heart and I could see my heart on the screen there and I heard this beep, beep, beep, and then this BEEEEEP," Hillman said.

"The sound was getting further and further away from me and things were starting to get darker and go black," she said. "It was like I was in a dark tunnel and there was a light that was having me go toward it, but I didn't go all the way. I guess in that time I came to life again."

This time she stayed firmly among the living. About two hours after the surgery, while she was still in intensive care with tubes down her throat, Marilyn was writing in the air that she wanted strawberries and ice cream. She got them three days later.

"I healed quicker than most of the patients that were here before me, but I'm a pro, I know what to do to get out of the hospital," Hillman said. "I always tell my husband that if my heart ever stops ticking, just take me to the mall and I'll start up again."

Now Hillman takes nearly 30 pills a day to help her body accept the heart and fight off infection. Even a common cold could be harmful and she must avoid pets and recently vaccinated babies, which can carry viruses. About 85 percent of heart transplants survive the first few years.

"She's a very determined person," said Marilyn's sister-in-law, Valerie Hillman. "It never stops her. She just has her heart surgery and comes home. She just seems very appreciative of life."

"She's a remarkable woman there," John Hillman said. "She's full of life and she just has a real strong will to live. No matter how sick she was she always wanted to get things done, and she never let on to anyone how sick she was."

Hillman's friends and family in Juneau and Hoonah are holding a raffle to help cover the family's costs in Seattle. If her recovery continues, Hillman should be able to return home to Hoonah in September.

"I'd like to get home and thank everyone for their prayers and their gifts and their support," she said. "I know each one of us has an angel, but I call on more than one."

Raffle prizes include a $500 Fred Meyer gift certificate, Coastal Helicopters glacier tour for two, a 2003 Gold Medal tournament pass, and many other items. The $1 tickets can be purchased in Juneau from Roberta Wolfe at 586-1265 or Valerie Hillman at 463-7143, or in Hoonah from Sue Tyler at 945-3626.

Trending this week:


© 2018. All Rights Reserved.  | Contact Us