Organ donations 'a true gift'In this season of giving, three area women say they’ve received the greatest gift of all — life through organ donation.
By: Pamela Knudson, Grand Forks Herald
In this season of giving, three area women say they’ve received the greatest gift of all — life through organ donation.
They know the decision by the donors’ families to give an organ was made in the midst of sorrow, and perhaps shock, at the loss of a loved one.
They want others to understand what this gift means, and to consider becoming organ, eye and tissue donors.
Older people can be donors too, said Sally Jacobson, Grand Forks, an active volunteer for LifeSource, a regional division of the United Network for Organ Sharing which coordinates the nation’s organ transplant system.
She underwent a liver transplant in 2006 at age 61.
“We’ve had donors who were 92 years old,” she said. “I say, let the medical professionals make the decision” about the viability of the organ.
She emphasizes the need for donors to share their wishes with their families.
Jacobson also invites transplant recipients to attend a support group that meets monthly, except during the month of December, at Altru’s Building One.
“Sometimes, we have speakers. Other times, it’s an open forum,” she said.
‘Door-slammer of a heart attack’
Robin Brosseau, of Drayton, N.D., who had a heart transplant in July, said, “Once you and your family are in a position of need, your perspective changes.
“When you come through this, you see the extreme need and what can be accomplished.”
She understands why some people may hesitate to become donors but believes they would feel differently if they realized “how respectful the process is for donors and their families,” she said. “With factual information, their fears would be allayed.
“The less you know about something, the more you fear it.”
Brosseau recalls facing the prospect of a heart transplant.
“It’s a big thought to get your head around,” she said.
Her journey to transplantation began Feb. 8, 2010, when Brosseau had “a door-slammer of a heart attack,” she said. It surprised her, since she had no serious heart problems at the time but was taking blood pressure medication.
“A lot of angels had to get their act together to get me down to Grand Forks,” she said of the 45-mile trip from Drayton.
For the next two years, she lived with a left ventricle assist device, or LVAD, which helped her heart function after being damaged by the heart attack.
In that time, Brosseau had grown quite used to wearing the battery-powered LVAD — as heavy and awkward as it was — and she thought she could just go on living with that, she said. But Mayo Clinic doctors in Rochester, Minn., “led me down that path” to greater comfort with the idea of having a transplant.
“The technology is so advanced now. It’s a good time to need a transplant.”
Waiting for a heart to become available was “a spiritual journey,” she said. “You get to a place where you have a plan. I trusted what the Lord had in store for us.”
When she got the call to get to Mayo immediately, she remembers feeling very calm as she flew alone on a Life Flight out of Grafton, N.D. Her husband, Jon, had to stay behind to close the house and prepare for a long stay in Rochester.
She credits her peace-of-mind to the many prayers by family and friends around the country, she said. She was surprised that she didn’t feel nervous or frightened.
“Reality had set in that this is what we’ve been waiting for… This is it. People have prayed long and hard.”
After the transplant, she and Jon lived for nearly three months in Mayo’s Gift of Life Transplant House, a residence for people recovering from or waiting for a transplant.
They saw “a lot of the human condition and a lot of love,” she said. One couple from Jordan had been waiting for an organ for eight months; another from Oregon had been waiting two-and-a-half years for a double-organ transplant.
“The stories that come out of there are inspiring and devastating,” she said. “You can’t live there without becoming a different person.”
‘Always in my prayers’
All she knows of her donor is that the woman was younger than she.
“She’s always in my prayers, and her family,” she said.
Brosseau can send a letter to the donor family that will be routed through LifeSource to protect individuals’ privacy.
“I definitely will contact the family,” she said. But she wants to be careful about her message.
“I struggle with how to make (the letter) meaningful to them. You get this one chance. If it’s written on paper, it’s probably going to be a keepsake for the family.”
The heart and soul go together, she said. “I feel a huge bond with this family.”
The heart she received “was seemingly a perfect match for my body,” she said, noting that she’s still in awe of the gift she’s been given.
“The experience was life-changing. I am more spiritual and centered… I could never imagine having a heart transplant.”
After the operation, “we drove around, looking at the beautiful scenery around Rochester,” she said. “I thought, how lucky I am to be doing this…
“It’s humbling, that everything went so well for me, when others are so sick.”
Heart attack at 37
For Diane Nelson, of Northwood, N.D., a heart attack at age 37 jumpstarted her journey toward a transplant. At the time, her children were ages 5, 11 and 12.
Over the next 15 years, she had bypass surgeries, but her heart deteriorated to the point that she had to quit her nursing job.
In fall 2005, her heart “started getting a lot worse,” she said. She began tests and screenings that would ensure her overall health was sufficient to qualify for a transplant.
“Becoming a candidate for transplant, I just couldn’t believe it,” she said. “I didn’t believe I was that sick…”
She was “shocked and scared to death” when her doctor at Abbott Northwestern Hospital in Minneapolis told her it was time to consider transplantation.
“We’d tried meds,” she said, but her condition worsened “and it wasn’t going to get better.”
She was placed on the transplant list in March 2006.
“I didn’t have to wait too awfully long for it — only 39 days,” she said. “I was very fortunate.”
She only knows that her donor was from the Sioux Falls, S.D., area and a mother of three children.
Facing this ordeal as a nurse had its pluses and minuses, Nelson said. “I knew what could happen, and I knew what those drugs were for. It was kind of frightening. I maybe knew a little too much.
“On the other hand, I could follow what they were doing and why. If I didn’t have my nursing background, I would be totally lost.”
Describing herself as “stubborn,” she wanted to do everything herself, she said. “You find out you’re probably not as strong as you think you are.
“You need a good support system to go through something like this. My parents, husband, my kids and their spouses — all helped me so much.”
She also credits “the whole town of Northwood” for supporting her.
“Some days, I don’t think I realized how lucky I was,” she said. “I have five grandchildren. If I had missed any of that… it makes me sad.”
Six years after her heart transplant, “I don’t think that it’s really sunk in,” she said. “I’m alive, and I have three more grandchildren… You’re just so grateful.
“The heart was a good fit; it’s mine. It once belonged to someone else but they’re gone now…
Doctors took someone’s heart and stitched it into me. It’s just a miracle.”
She’s come to grips with the idea that death of another meant life for her.
“I feel bad that someone died, and I got their heart. She couldn’t live. I think about what the family went through. That was my first thought: Somebody died, so I could have a heart.
“It’s a gift — a true gift.”
Most people think transplantation is a wonderful idea, she said, but the hurdle is to get them to make the designation (as donors) on their drivers’ license.
They should, she said, because transplantation “has saved so many lives.”
Jacobson, now retired, dedicates much of her time telling her story to inform others about how important it is to become an organ donor.
“My family and I are eternally grateful for this awesome gift,” she said. “My life was saved. I have a need to pay back.”
The liver she received in April 2006 was 21 years older than she at the time. It was donated by an 82-year-old man from New York who died from a brain aneurysm.
That’s as much as she knows about the donor, she said. After the transplant, she wrote to the donor’s family, but received no response.
She’s already planning a celebration for the organ.
“In a year and a half, when my liver turns 90, we’re going to have birthday party for it,” she said.
In the months leading up to transplant, Jacobson felt increasingly tired. She was becoming “very incapacitated,” she recalled. “I had a lot of trouble walking and breathing.”
One of her friends commented that her face looked yellow.
The change had come on so gradually that Jacobson hadn’t noticed her skin color or that the white of her eyes had also turned yellow.
In fall 2005 while receiving medical care in Grand Forks, she was advised to go to Mayo Clinic.
Before her appointment, though, she had to go to Altru emergency room, where she underwent a thoracentesis to drain four liters of fluid from her right chest cavity.
“I literally thought I was dying,” she said. “I couldn’t catch my breath.”
At Mayo, she had repeated thoracentesis procedures, as well as many other treatments and hospitalizations, but “I went downhill so fast that doctors asked if I would accept an older liver. We gladly accepted that.”
She reasoned that the transplant would allow her to see her grandchildren reach high school.
At that point, “my husband and I knew that I had, maybe, a month to live.”
A Mayo, a physician told her she “was one of the 0.5 percent of people whose liver fails without a reason,” she said. She was diagnosed with autoimmune hepatitis.
She remembers the night she received the call that a liver was available for her. She was alone in the Rochester hotel.
Before the family left for the hospital, they had a family prayer — for the surgeon, for their family and for the family that lost a loved one.
Faith plays a key role in the Jacobsons’ ability to cope with health challenges.
“All through this, my mantra has been, ‘Not my will, but Thine be done,’” she said.
Advancements in technology that have made organ transplants possible are “almost unbelievable,” said Marlin Jacobson, Sally’s husband.
He couldn’t fathom that heart transplantation would be something he would ever experience.
Mayo doctors told Sally the liver she received “was just like it was meant for me,” she said. “They said it nestled in just right.”
Shortly after her transplant, the family faced a tragedy that would further test their faith: their 1-year-old granddaughter died of SIDS. The family decided she would be an organ donor.
For Sally, receiving the liver from an elderly donor was a blessing, she said.
If it was a younger person, “I’d have had a lot of guilt, receiving a liver from tragedy of a young life.”
A few years ago, at a Mayo-sponsored picnic, the Jacobsons met a woman who inspired Sally to become a volunteer for LifeSource.
“It’s funny how many people will talk about (their transplant experience) one-to-one but not to a group,” she said. She’s not one of them.
She keeps busy speaking publically on the importance of organ donation to groups such as senior citizens, churches, drivers’ education classes and health professionals.
“I do whatever I can because I feel the message is so important,” she said. “Any group that asks me, I try to do it.”
“You feel like you should,” Marlin said.
Sally doesn’t take for granted the gift she’s received.
“Every day, I wake up and think ‘I’ve got a new day. I’ve been blessed.’”
Call Knudson at (701) 780-1107; (800) 477-6572, ext. 1107; or send e-mail to firstname.lastname@example.org.