NEWS 8 EXCLUSIVE
BOSTON In the city where Paul Revere called Americans to arms, Katy Hayes awaits her call... for arms.
'It's killing us, because I don't know when the call's going to come,' she said. 'And we're running out of money.'
Four years ago, Hayes' arms and legs had to be amputated at Parkland Memorial Hospital in Dallas after a strep infection became a flesh-eating bacteria. Al Hayes said he did his best, along with doctors, to preserve what they could of his wife's arms and legs in the hope she would be able to wear prosthetics.
Two years ago, the quadruple-amputee mom celebrated after being accepted as a candidate for a double-arm transplant at Brigham and Women's Hospital in Boston.
Mr. and Mrs. Hayes gladly changed the landscape of their lives, uprooting their family from Houston and moving to Boston with four-year-old Arielle and 10-year-old Jake. Because of the time-sensitive nature of arm transplants, the Hayes must be close to the hospital and ready to respond at a moment's notice.
They thought it would be a one-year wait, maximum.
'We not only have to match based on gender and size, but we also have to match on things like the antibodies that are circulating in the system,' explained Brigham and Women's Dr. Simon Talbot, the lead transplant surgeon in Katy Hayes' case.
He said part of the delay in finding a match is that it's much harder to find female donors.
'Most of the donors who come to us are typically males, because there are more males typically injured in traumatic situations that are appropriate for donation,' Talbot said.
Female donors who have been hospitalized for some time before passing away often have arms that aren't eligible for transplant because of numerous IVs. Arms used for transplant must be virtually undamaged.
Hayes' would be the first double, above-the-elbow arm transplants performed by Brigham and Women's. Hers, it's believed, would help many amputees to follow including veterans who have lost limbs in combat.
Last July, there was a match. But it failed due to a medical technicality.
And so, too briefly did the Hayes' hope.
'I had somebody offer me their arm the other day,' Katy Hayes said through tears of frustration, incredulity, and gratefulness. 'I thought, 'That is so sweet, because man, if I had just one arm, I'd go home with one arm.' But I don't want to take someone else's arm.'
It's mostly from the generosity of people who care that the family has survived for two years in the expensive northeastern city.
Al Hayes, a former middle school band director, plays guitar at local bars to help supplement a meager disability check that doesn't cover living expenses.
The family of four, plus a large dog, share a tiny, two-bedroom apartment in a Boston suburb. They don't even have a kitchen table.
Their home outside Houston has been robbed more than once. Because of the extended wait outside the public eye, donations are dwindling, putting Mr. and Mrs. Hayes on the edge of financial ruin.
They have discussed selling their Kingwood home in order to stay in Boston until the transplant happens.
'One of the options is liquidating everything,' Al Hayes said.'We changed our vows to the end of time. We didn't even say 'Til death do we part.' If I said that, am I not supposed to be willing to sacrifice everything?'
Their son, Jake, who was initially resentful of his mom's condition, has grown up in many ways. He has just one wish now.
'Because she's always disappointed that she doesn't have arms and legs and she can't do anything, I just want her to be happy,' he said
To help relieve stress, Al Hayes strapped a paintbrush to his wife's right bicep with an Ace bandage a few months ago. What happened next has transformed more than canvas.
'My self-esteem has been in the toilet since the arm loss and leg loss,' Katy Hayes said. 'Just who am I? What am I doing? Am I going to be a burden for the rest of my life? I mean, those things come to your head, because the prosthetics were not working for me and now waiting for arms for two years. It's like, 'So what do I have to contribute?''
She discovered that even without hands, she could still paint.
'And then I thought, 'Why not put it on Facebook?'' she said. 'And everybody went crazy it for it.'
Hayes is now selling some of those paintings, sometimes painting for hours every day. The process doubles as physical therapy to add to her shoulder strength and flexibility.
'It gave me something to do,' she said with a smile. 'It gave us a little bit of an income, and it made me feel productive!'
'The only reason I'm here, and I've been able to have this wonderful dream, is we've had so many wonderful people,' she continued. 'I'm so grateful because we're so close. I know we're so close. And I know it's going to come. But when you see the money dwindling and my husband can't even work, because he has to take care of me you know, it's really upsetting. So I just paint. And I pray. And put it out there.'
With each brushstroke, the Hayes family remains hopeful the picture of their lives will also transform soon.
Until that happens, all they can do is hold on for that pivotal call for arms.