Allison Lindgren knows the value of donating blood and vital organs. Having been diagnosed one year after birth with restrictive cardiomyopathy, the rarest form of heart disease, for which there is …
Allison Lindgren knows the value of donating blood and vital organs. Having been diagnosed one year after birth with restrictive cardiomyopathy, the rarest form of heart disease, for which there is no cure, Lindgren was in need of a heart transplant by the age of 11. She was fortunate enough to be matched with a donor and underwent a successful transplant.
The Cumberland native, who is now 25 and works at PBS in Rhode Island after graduating Northeastern University with a degree in communications and film, was on hand at the Warwick Avenue Dunkin’ Donuts shop last Thursday to help the Rhode Island Blood Center kick off National Blood Donor Month with “Give a Pint, Get a Pound.”
In collaboration with the Blood Center, for anyone that donates blood at the center or a blood drive during the month of January, Dunkin’ Donuts will provide a coupon for a free pound of Dunkin’ Donuts coffee as a thank you.
National Blood Donor Month was initiated in January 1970 in an effort to provide a safe and adequate blood supply during a time of year when collection is made difficult due to school vacations, holidays, inclement weather and illness.
Since her transplant, Lindgren has been heavily involved with similar events, assisting organizations such as the American Heart Association and the New England Organ Bank, as well as organizing events and serving as vice president for the Rhode Island Organ Donor Awareness Coalition, a local chapter of the New England Organ Bank. It was through her work with these organizations that she met Frank Prosnitz, communications manager at the Blood Center, who asked if she’d be interested in helping kick off National Blood Donor Month.
“I think events like this are really important,” she said. “It’s important to educate people because they can be naïve to the fact that this issue affects young kids, too.”
Lindgren said it’s especially important to talk with high school students, which she does through school appearances.
“It’s important to talk to kids in high schools because they’re at an age when they can start donating blood and organs; they can affect someone at an early age,” she said.
When talking to people about blood and organ donation, Lindgren said many people often share their own stories with her.
“A family sees the importance of that [donation], so I try to tell my story and see if people can relate,” she said.
When asked if she ever thought she’d be where she is today, Lindgren said she never looked this far ahead.
“I was just thinking, ‘I need this [transplant] now.’ I knew I was sick and I just wanted the doctors to fix it and make it better,” she said.
Lindgren described restrictive cardiomyopathy as the heart turning to scar tissue, adding that it always leads to a transplant or death.
That can be a lot to handle for anyone, and especially a young person, but Lindgren took it all in stride. Having a great support system in family and friends helped.
“I was diagnosed when I was a baby, so I grew up with it. I understood that I wasn’t able to do things with my friends, like run around at recess, and I couldn’t take gym classes,” she said. “My friends were really good about it. They would always fight over who got to push me around in my wheelchair.”
Lindgren was fortunate to live as long as she did with the disease before needing a transplant.
“Eleven years is a long time to survive with it,” she said. “I lived with it until the summer after sixth grade. Then a week into summer vacation, I started vomiting and having worse symptoms.”
Lindgren said she went to Boston, where she was placed on a donor list in September, which is based on need.
“After a few weeks, it got worse and I got the transplant before it got more serious,” she said. “It was tough at the time. They gave us a beeper that would get paged if they heard any news and I couldn’t travel more than two hours away from Boston.”
Lindgren said it was a stressful situation because the beeper constantly went off accidentally, which meant a wrong number.
“On October 29th, they came into my room and said they had a heart for me and that it was coming from far away,” she said. “All I could think was, ‘Get it over with!’ I wasn’t feeling well and was tired of waiting.”
On Oct. 30, 1998, Lindgren underwent a successful transplant. She spent 12 days in recovery before going home. Although she couldn’t go to school right away and had to wear a mask until her immune system could build up strength again, she noticed a difference right away.
“I could go up and down stairs. There were no physical limitations any longer,” she said.
A year after the transplant, Lindgren joined a recreation soccer team and the team went on to win the championship that year.
“I always wanted to do sports. My sister was the soccer player all my life,” she said. “We won the whole thing the first year I played. It felt really good.”
Lindgren said she has to take medicine every day for the rest of her life because she’s immunocompromised, adding, “my heart still beats at a faster rate than a normal rate,” but said she stays active and goes to the gym all the time.
The Rhode Island Blood Center, founded in 1979, collects 280 units of blood every day. Donor centers are located in Providence, Warwick, Narragansett, Woonsocket and Middletown. To donate blood and platelets, individuals must be 17, weigh 110 pounds and be in good general health. Sixteen-year-olds may donate if they weigh 130 pounds and have a parental permission slip, available on the Blood Center’s website at www.ribc.org. To make an appointment, call 1-800-283-8385 or log onto edonor on the website.
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