SHAPLEIGH (WGME) — A woman in need of a double lung transplant says she’s running out of time and blames a change in policy.

Valarie Hale isn’t living life the way she’d like to.

“I have an inherited disease, auto-immune disease, called Alpha-1 Antitrypsin Deficiency,” said Hale.

It affects her ability to breathe. She said she’s been waiting three years for a double-lung transplant, ever since she got on the list at a Boston hospital in 2016.

Maine doesn’t have any hospitals that perform lung transplants.

“Since that time, I’ve gone from 33 percent lung function down to nine percent, which is my current status now,” Hale said.

Hale said she got two calls early on, but couldn’t accept either set of lungs. One was high risk, she said, and an infection kept her from getting the other.

It’s been nearly two years since the phone rang and she blames the wait on a new policy that was changed by a landmark lawsuit in 2017.

When it comes to transplants, the United States is divided into 11 regions and 58 territories known as Donor Service Areas, or DSA’s.

In the past, organs collected in a DSA stayed there, going to the sickest patients at the top of the list. They only left the DSA if they weren’t a good match for anyone.

Now, some organs can travel beyond those boundaries. Lungs are offered to the sickest person within 250 nautical miles of the donor’s hospital, which is about 288 standard miles.

A spokesperson from New England Donor Services, which coordinates donations for most of New England, said the policy has resulted in more lungs going both in and out of the area in equal numbers, improving the system by prioritizing the sickest patients.

However, national data from United Network for Organ Sharing, or UNOS, shows a different impact.

A report that examined results one year after the policy change found the number of recipients in New England dropped more than 20 percent. It was more than any other region.

“I know there is a wait, but at this point, you know, I can’t wait any longer,” Hale said. “It needs to happen.”

Hale said she’s competing against a bigger pool of people and essentially has to get sicker to get to the top of the list. If she gets too sick, she won’t be eligible.

“I am scared, but I have faith,” she said.

She wants to see the policy change reversed.

“I’ll be thumping,” said Hale. “I’ll be thumping. I just need to get these lungs so I can talk louder and walk farther.”

And she has plenty of other reasons to keep fighting.

“My little granddaughter’s like, ‘Grammy, when you get a transplant, we’re gonna cook together, we’re gonna go hiking and we’re gonna pick flowers,” Hale said.

Hale hopes sharing her struggle will make the public more aware of how important it is to be an organ donor.



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