And then you understand the profundity of their experience, when these organ recipients talk about the gift that meant they would live another day, another year, another lifetime. You listen to them grapple with the knowledge that as their life was starting again, another’s was ending.
Until you meet organ recipients and surviving members of organ-donor families, you might not be able to fully grasp the interdependence we all have on one another in this life. So meet them here, and understand.
Gaylord/Traverse City college student
Transplant: Liver, 2006
In a matter hours, Holly Werlein went from typical college student to the brink of death. And the whole time, she thought she was in Florida.
If that sounds confusing, that’s what happens when a liver fails — the confusion, the yellowing eyes, and the need for an immediate transplant.
“They don’t know what happened to my liver,” said Holly, a Gaylord native and college student in Traverse City.
Holly and her mom, Julie, were at the Cleveland Clinic in 2006 for an unrelated health issue when a doctor noticed the yellow in Holly’s eyes. A liver test was ordered and certain enzymes, normally in the 50-range, had rocketed to the thousands. “It happens very quickly, and she didn’t even realize what was happening,” said her mom. “Can you imagine waking up to, ‘You just had a liver transplant.’ She did not know what was going on.”
Holly was immediately placed at the top of the national organ donor registry for a liver; her miracle came seven hours later. Without it, the tall, beautiful young woman with a whole life ahead of her would not have survived.
Her donor was a man in his 40s. Holly later wrote to his mother to express her gratitude for the gift of life she received, and the letter she received back touches her yet today. “She said, ‘I’m going to become an organ donor now that I know somebody who benefited,’” Holly recalled.
While she suffered an initial round of organ rejection, involving a life-flight back to the Cleveland Clinic, today Holly is proud to say she won two gold and two silver medals at the U.S. Transplant Games held in 2008 in Pittsburgh. She’s hoping to raise enough money to take part in the world games in August in Australia.
“It was so nice to be with other people my age,” Holly said, “who have lived through this.”
To help Holly raise money for the summer transplant games, visit www.nmichtransplants.org and click on the “U.S. Transplant Games” link. Also, a fund-raiser arts-and-crafts show will take place May 9 in Petoskey to benefit Holly; contact Suzie Coveyou at email@example.com for details. To donate directly to Holly, e-mail her mom at firstname.lastname@example.org.
Transplant: Heart and liver, 1997
Jerry Coger was 42 when the genetic disease afflicting a number of his family members became a matter of life or death for him.
One of seven siblings, Familial Amyloidosis Polyneuropathy had set on the same insidious path in Jerry’s body as it had in a brother and sister. FAP involves a defective enzyme that is produced in the liver which is released and coats organs and tissues, sticking to everything inside and clogging up crucial bodily functions.
He had been seeing specialists in Boston as the disease worsened, and was told because he needed a heart and liver transplant to survive, the doctors there would be unable to help him.
“We were devastated,” said Jerry, of he and his wife Trish. “Our doctor said, ‘We can’t do you,’ and we felt like we were at the end of the road.”
But roads have many intersections, and Jerry’s was about to head in a different direction.
While on the national organ transplant list, Jerry, being treated now at the Cleveland Clinic, endured rigorous testing to prove his body could accept new organs and that Jerry himself would do everything instructed of him to ensure their care, if he were to be fortunate enough to receive both the heart and the liver he needed.
“You’re trading certain death for life,” Jerry said. “Someone else is dying waiting for organs while you are receiving yours. You have to realize it is truly a gift, the gift of life.”
His health worsened with a heart attack while he continued to wait for organs. Then the call came — a liver and a heart had become available.
“I know his name, I know his age, I know his mom and dad,” Jerry said of his donor. “I’ve seen his grave site. I’ve had dinner with his parents.”
His donor was a 26-year-old man who died unexpectedly of an aneurysm. The gift given by his parents is one that has meant a new chance at life for Jerry, and the impact of that generosity is not lost on him for an instant.
“Is there life after death?” he says, looking around the members of his support group this day. “Yes, it’s us.”
Transplant: Kidney, 2003
Linda Oliver’s brother was not going to let her die.
“He always said if anybody needed a kidney he would give it to whoever needed it first,” Linda said, of her older brother James Koehler, of New Mexico. “It turned out I did.”
In Linda’s family, a healthy kidney was indeed a rarity. Polycystic kidney disease (PKD), a genetic disorder, has raged through the lineage, affecting her two sisters, another brother and cousins and claiming the life of her father at just 47.
When she was 23, she learned she had PKD as well, a condition that stops the flow of blood through the lining of the kidneys where wastes are filtered. She had been on dialysis for a year before the need for a new kidney to replace her two failing ones was inevitable.
Her brother kept his promise, and he endured a lengthy surgery after doctors discovered his kidneys were tucked up under the rib cage. The intricate operation, which left him with “railroad track” scars around both sides of his torso, saved his sister’s life. Linda has three kidneys today – the two diseased organs that were left inside and which aren’t functioning, and her brother’s kidney which doctors attached on the front of her torso in her lower abdomen.
“I’m feeling great, I can’t complain,” Linda said.
And her brother is doing well also, she added. “People ask me how I asked him for a kidney,” Linda said. “I never asked.”
Transplant: Double lung, 2003
For many years, doctors told Trish Bowra that she had asthma. She was regularly short of breath and felt tired, and assumed the fact she smoked contributed to the breathing trouble she experienced.
But it wasn’t asthma, it was the genetic condition known as Alpha 1 antitrypsin deficiency; her liver didn’t produce the enzyme that protects the lungs. She had a particularly potent form of the disease, having received the genes from both her mom and her dad.
Coming from a family of 10 children, her older brother likewise suffered from the condition with the same symptoms, so Trish never bothered to get tested even as her condition worsened.
After a particularly difficult bout of breathing trouble about 12 years ago, she went to the ER where a doctor encouraged her to get tested so she may benefit from treatments; the results showed what she had long known.
By the time she was seen by doctors at the University of Michigan, her lung function was down to 22 percent. On April 9, 2003, hospital staff called and said “We’ve got your lungs,’” Trish recalled.
Her sister Sue picked her up and they boarded a plane at Pellston Regional Airport in the middle of the night. Mid-air, the engines stopped. Her sister was in a panic, but not Trish. “I said well, if it’s our time to go it’s our time to go,” Trish said with a trademark smile and laugh.
But it wasn’t; the pilot was switching gas tanks and the engines shut off momentarily. Trish made it on time to receive her new lungs, procured, she only recently learned, from a Traverse City woman who died at age 44 from an aneurysm.
The woman was being treated for the aneurysm at U of M when she died that evening, and her husband gave permission to give new life to one of the thousands of people waiting on the national donor list for organs.
“I contacted them on the first year anniversary of the transplant and I got the feeling they didn’t want to interact at that time,” Trish said. “I wrote again on the second anniversary, and her husband said he was comforted that he made the right decision, and that he still missed her.”
Trish understands the loss. Her husband, Kim, also a double-lung recipient, died in February 2005. They had met through a support group for transplant recipients and only had a few short years together.
“That is why I like to wear my button to ask about my hero. She was very courageous to have talked to her family about organ donation long before it was needed, and her family is also my hero for doing what she wanted and making that decision during the most awful days of their lives,” Trish said. “I will be forever grateful to her and them for that decision. I thank them every day for giving me life again even when losing a part of theirs.”
Transplant: Single lung, 1999
Founder: Organ Transplant Support Group of Northern Michigan, www.nmichtransplants.org (meetings held at Otsego Memorial Hospital Professional Medical Building, Gaylord)
The same condition that took away the breathing ability of Trish Bowra (whose story is above), antitrypsin deficiency was stealing the breath of Bev Cherwinski through her life as well.
Bev suffered bout after bout of bronchitis through her young adult years, perhaps exacerbated by smoking at that point, and during one particularly troubling episode, at age 35, doctors drew a blood sample. It revealed the deficiency and explained much about what she endured for years struggling with a function most take for granted — breathing.
“A doctor gave me a little pill and said it should never get worse,” she recalled, of her diagnosis in 1978. “It took a long time for it to get more severe. You learn really quickly how important breathing is.”
By 1997, Bev’s breathing had worsened to a point that a Northern Michigan pulmonologist had told her she wouldn’t be a candidate for a lung transplant. “If I would have taken that advice, I wouldn’t be here,” she said.
Instead, she consulted specialists at the University of Michigan who put her on the transplant waiting list and told her she “more than qualified” for new lungs.
“We were scared to death,” said her daughter, Suzie Coveyou of Petoskey.
Because of the fear of the unknown about organ transplants, Bev started the Organ Transplant Support Group of Northern Michigan in 1998. And fourteen months after being put on the transplant need list, she got the call from U of M at 2:45 a.m. May 5, 1999.
Her breathing capacity had worsened to just 17 percent, yet when she ran out of oxygen in her tank on the way down, euphoria kept her breathing to the hospital doors.
It took her a long time to contact the donor’s family; she has learned only that he was a 27-year-old man from North Carolina. And what he gave her is indescribable, including renewed energy and the ability to keep on enjoying life.
“It’s not about your quantity of life,” said her daughter Suzie, “it’s about the quality.”