Morgan Yoney’s hospital room at UPMC Presbyterian was dim, even though it was the middle of a sunny day in Pittsburgh. Still, the walls were covered in colorful cards sent by some of the more than 17,000 followers of “Morgan’s Army.” Morgan is currently in the hospital, waiting for a new set of lungs.
“Morgan was diagnosed with Cystic Fibrosis at 9 months old,” said her mother, Tammy Yoney.
On Wednesday, Morgan was not feeling well enough to talk. With her purple hair pulled back, a bright pink shirt and black sweat pants on, the 22-year-old snuggled against her mom.
“She lived a pretty normal, healthy life until she was 12,” said Tammy. “That’s when the first mention of transplant happened. Ended up having her first transplant January of 2010, she had a double lung and liver transplant. In 2013, Morgan was diagnosed with chronic rejection of the lungs and unfortunately the treatment didn’t help, so now Morgan has been waiting for two years for a second double lung transplant."
Cystic Fibrosis, in short, is a genetic disorder which causes mucus to become thick and sticky – it blocks the lungs, which causes damage over time. Decades ago, few children with CF lived long enough to go to college. Now the median life expectancy for CF patients who survive childhood is 40.
The Yoney family is from Spraggs, Pa., but while raising funds for Cystic Fibrosis, North Hills business owner Dan Burda met Morgan. Now, signs and billboards that read “O+ Lungs for Morgan” can be seen all around the North Hills, they’ve popped up thanks to help from Burda and Morgan’s Army, a Facebook page keeping her supporters up to date on her condition and the search for lungs that match her blood type.
“We went out, searching on our own, to get O+ lungs – not just for Morgan, but it also raises awareness for organ donation which really is one of our biggest goals – to make people realize how important organ donation is,” said Tammy.
Ninety-five percent of Pennsylvanians say they support organ donation, but fewer than half are registered as donors, according to Donate Life PA. The same holds true nationally. In order to register, you simply have to agree to put the designation on your driver’s license or ID.
But some people online didn’t see the Morgan’s Army campaign as a way to raise general awareness, rather as a selfish thing. Tammy Yoney said while most of the feedback online was positive, a few people were angry.
“Because they kind of felt that we were asking to be put ahead of people,” she said, “but the campaign didn’t start until Morgan was already at the top of the list and her score was there to where she’s gonna get called whether we do that (the campaign) or not. Hopefully for every one person we get to change their mind about being an organ donor, we can save eight peoples’ lives and help 50-plus other people.”
Tammy has been with Morgan at the hospital every day – just waiting for the call that new lungs are waiting. Morgan’s dad, Bob Yoney, waits with them.
“We had a call two Saturdays ago, but the lungs weren’t any good,” he said.
The hospital had Morgan prepped and ready to go into surgery; testing of the lungs kept her and her parents on pins and needles for three hours.
“You live your life with that hope that that call’s gonna come and you get that close and it’s a huge letdown," Tammy said. "But you try not to get excited, but you can’t help but be a little bit excited when it comes because she’s so sick and she needs her transplant so bad."
Morgan has been in the hospital more than two weeks, one of her longest stays since the first organ transplant. Every day, she and many others pray the O+ lungs come. But that, of course, means someone else will have to die. Tammy said Morgan had a hard time with that concept before her first transplant.
“She actually almost turned down transplant because she didn’t want somebody to die to save her,” she said. “But in the whole scheme of things you realize that whether they save your life or not, they’re going to die so I have to try to remember this is not only a gift for her, but for the donor family – a gift to know that part of their loved one is living on.”
Morgan’s Facebook page shows a young woman with a bright smile who doesn’t let her tracheostomy tube slow her down and according to Tammy, she just wants to get back to living the life of someone in her early 20s.
“As time goes on, Morgan struggles a little bit more, which makes it a little bit harder for us too,” she said. “We just try to take it day by day and not look too far in the future because you know … it could be scary if we don’t get lungs.”
For now, her daily status and struggles are documented on Facebook for all to see. Tammy said she and Morgan want people to hear her story so they can grasp what it’s like waiting for a vital organ, and perhaps are moved to register as potential donors.
Health care coverage on 90.5 WESA is made possible in part by a grant from the Jewish Healthcare Foundation.