Vicki Bernstein has a lung condition called sarcoidosis, along with COPD, or chronic obstructive pulmonary disease.
“Been diagnosed about 18 years now, and the past year or so it’s really gotten much worse. I have a very difficult time obviously breathing, when I’m walking,” she said. “It’s scary when you get to that point where you can’t breathe and you’re like, shouldn’t the oxygen help me. And it’s not always a quick fix.”
About three years ago, Bernstein’s doctors recommended she get on the transplant waiting list for new lungs, but she says she wasn’t ready until a cold landed her in the hospital.
“And that’s when I said, ‘It’s time. I need to get on the list,'” she said. “Then of course, corona came around and it makes things even worse because if they do call you there’s a lot of concerns.”
She’s concerned about undergoing surgery at a time when exposure to coronavirus within a hospital setting is high. But Joe Roth, who heads New Jersey’s organ and tissue procurement organization, has different concerns.
“Through April, we’re down about 65% in terms of donation. Now in a normal time that wouldn’t worry us because it’s hard to forecast anyway during normal times what your donation rates are going to be. But at a time like this where there’s a lot of uncertainty as to how long this is going to string out, it’s of great concern to us that donation’s fallen,” Roth said.
Nationally, donation is down about 60%. And even when life-saving organs do become available, six out of the state’s seven hospitals with transplant centers don’t have the capacity to operate those centers.
“There are not a lot of transplant centers that are in business at the moment. They had to temporarily suspend their activity so their hospitals could shift their resources to COVID treatment,” he said.
A few have kept operations open for emergencies only — meaning heart, lung and liver transplants. But that means viable organs may not be getting transplanted.
“Because of our infection rate here in the Northeast, in New York, New Jersey and Connecticut, many times if we find a center that is interested in the organ and they hear it’s from New Jersey, they might turn it down just because of the concern that the organ might be infected,” Roth said.
And the unique health challenges of coronavirus means patients waiting for lungs, might be waiting even longer.
“We haven’t been able to allocate a lung for a while. Those are the ones that they’re most worried about, could be infected,” he said.
Bernstein knows it could be tomorrow or a year from now, but she longs to feel like herself again.
“I still would like to be the one out on the dance floor, and that is not happening these days. So you know, there’s a lot of things that I d0 feel like, you know, God willing, I’m going to get back some day,” she said.