Imagine what it must be like to breathe with an elephant sitting on your chest. Do that and you’ve have some idea of what Lisa Prevatte Ryan has been dealing with for the past 15 years.
Lisa, who grew up a couple doors down from on Chaplin Street in Wendell, has been dealing with the crippling effects of lymphangioleiomyomatosis, LAM for short, for the past 15 years. The first seven of those years the illness went undiagnosed.
LAM affects only women, usually in their child-bearing years. The illness is basically a bunch of cysts that form on the lungs and punch holes in the lungs.
In a phone call last week, Lisa told me her lungs look like Swiss cheese. Her lung capacity had dropped to just 23 percent. She went very few places outside her home and she went nowhere without her oxygen tank and all the breathing tubes she needs to get the oxygen out of the tank and into her lungs.
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The good news – the really, really good news – is that on Sunday, Lisa received a new set of lungs and all her friends and family hope the new lungs will improve the quality and the length of her life. She will still have LAM, she told me, but her ability to fight it off will be stronger.
When Lisa and I talked last Wednesday, she didn’t know she would be called in to Duke Medical Center to undergo the lung transplant. Already she had gone to the hospital twice expecting to receive transplants, only to have doctors cancel the operation at the last minute because of problems with the donor lungs, including once when she was literally being wheeled through the doors of the operating room.
There’s more good news for Lisa, I’m glad to say. She has insurance that will cover the vast majority of her healthcare costs, which will come in between $1 and $2 million for the transplant, the rehab, the 37 medications she will have to take once she goes home and all the preparatory work that went on before she ever had the operation.
Lisa’s challenge, though, is a familiar one to many of us. Though her insurance is good, she still faces between $10,000 and $15,000 in out-of-pocket costs. That’s no small change. As Lisa told me, not too many people have an extra $10,000 or $15,000 laying around.
She and her new husband of eight months, Bradley, save every penny they can and Lisa does have some disability income. But essentially they are living on one income now and saving that kind of money is tough.
She’s set up a Go Fund Me account, which I hope you’ll look up: http://bit.ly/1ZoOG1r. So far it has raised about 10 percent of what she needs.
When we talked last week, she told me she had been brainstorming with her mom and some friends about other ideas to help pay off the medical debt. For now, though, that will have to take a back seat to her recovery. It would be nice, I think, if she could check that Go Fund Me account again when she leaves the hospital and find that there is more than enough to take care of her needs. Anything extra, she said, will go to others in need or to the LAM Foundation.
There’s one more thing I can tell you about Lisa that I know will make a difference in her long-term prognosis. She is a woman of faith. She was raised up in church. Her dad, Baxter Prevatte, was the longtime pastor at Wendell Baptist and she told me he was a daily visitor to her home prior to her marriage last May. There they prayed together and shared their faith.
“I know I didn’t do anything wrong to get this,” she said. It was just a rare case of bad luck. “I have a better chance of winning the lottery twice than getting this disease,” she said. Worldwide there are about 2,500 cases of LAM. About 800 of them are here in the United States.
Thanks to the kindness of a donor, whose family now grieves their loss, Lisa has a second lease on life. I am sure her friends will gather close around her and make sure all her needs – all of them – are met.