Right next to the cash register, there it is. A mason jar or fishbowl with a handwritten sign asking for donations to a medical expense fund. Often, it’s for a child or a younger adult who’s suffered an accident or unexpected catastrophic illness. Sometimes, there’s a photograph of the person taken during happier times.
Usually, it’s a moment that makes us pause, whether or not we drop a dollar into the jar on our way out. Maybe walking across the parking lot to our car, we take a pensive look at the sky, wondering what we’d do if something like that ever happened to us, or worse, to someone we love.
And then it does.
In 2014, Garrett Cramer of Commerce was 38 years old. He worked at a grocery store supplier in Sulphur Springs. The job involved some physical labor – loading and unloading – and he was in pretty good shape. But strangely, he started to lose a little bulk. Garrett started coming home tired, and then started feeling tired all the time. His wife, Rachel, was concerned.
“He hadn’t been feeling well,” Rachel said. “We kind of thought that maybe he was overworking himself … He was seeing a doctor here in Commerce who, basically, for lack of a better term, blew him off and said ‘Oh, you’re just getting older.’ But he was a little young for the way he was feeling.”
One day, Garrett called his wife at work and told her that he felt terrible. Rachel suggested they go to the emergency room in Sulphur Springs. Tests showed that not only did Garrett have an enlarged heart, but he also had suffered a heart attack that day. To make matters worse, an x-ray showed holes in Garrett’s bones.
Shortly thereafter, the Cramers were at Baylor University Medical Center in Dallas. Tests there confirmed multiple myeloma, a type of cancer, as well as cardiac light-chain (AL) amyloidosis. Chemotherapy began the same evening the diagnosis was confirmed.
“They said if he’d gone to work the next day, he probably would have died,” Rachel said. Garrett was given about six months to live, by doctors’ estimates. The cancer in his bones, combined with the related cardiac illness, had likely done just too much damage for treatment to save him.
“They said that his heart was too weak for a stem-cell transplant and that his cancer was too advanced for a heart transplant,” Rachel said.
In the summer of 2015, the Cramers spent much of what money they had on a month-long road trip that they thought would be Garrett’s last, and their children’s last with their father. They saw the Rocky Mountains, the West Coast, then through the heartlands to the East Coast, then through the South and back home – to an uncertain future. Doctors had said that death by heart failure could happen at any time.
“It’s really hard not knowing what the future holds, and knowing that your husband could die at any moment and there’s nothing you can do about it,” Rachel said. “That’s really hard to explain to your kids.” Garrett and Rachel made sure their children learned CPR, just in case. The youngest was 8 years old at the time of the diagnosis.
Not knowing what to do but just keep on living each day, that’s what the Cramer family did. One year went by, then another. Garrett seemed to be holding steady, maybe even improving a little in a few ways, sometimes. But this year, Garrett began to get worse. He was hospitalized twice, but doctors at Baylor continued to deny him as a transplant candidate. They did, however, refer him to Vanderbilt University Medical Center in Nashville. No harm in getting another opinion.
Last week, Vanderbilt agreed to put him on a heart transplant list. Garrett is living at the hospital in Nashville for the time being, as the heart medicine he’s on is delivered intravenously only and requires that he be monitored. Nashville is expensive, so Rachel is now setting up a temporary home in nearby Bowling Green, Kentucky, about an hour’s drive up the interstate. Garrett’s transplant surgery could happen as soon as before the end of the month.
“As long as his body doesn’t reject the heart, he should do well,” Rachel said.
This month, Forbes reported that Americans are raising about $650 million annually on just one website – GoFundMe – to help with medical expenses. Minnesota Public Radio reported on the same phenomenon earlier this summer. That number doesn’t count the dollar bills in glass jars placed by the register at diners and corner stores in little towns like Commerce and Sulphur Springs.
Whatever one thinks of our health care system – and whatever remedies one thinks are indicated, if any – the reality is that people can’t pay for the care they need. Not on their own.
“There are lots of expenses with a heart transplant,” Rachel says matter-of-factly. “One of the things that they actually require you to do is ask people for money – which is really difficult. Because my husband and I have never, ever done anything like that.” Neither have most people facing catastrophic illness.
“They even suggested to us that we ask people to commit to giving money to us every month, like a monthly payment,” Rachel said. “And I just didn’t feel comfortable asking for that. That’s a lot to ask of someone, even family. And we don’t come from a wealthy family, either side.”
Rachel, like so many others, turned to GoFundMe. The expenses they will face are impossible to predict, due to the nature of the organ transplant experience. Some patients recover on schedule, some don’t.
There’s never a good time for an unexpected expense. Garrett’s diagnosis came about three months after the Cramers had begun paying on a house purchase in Commerce, Rachel said.
“If we had known that he could have a heart transplant and we were going to need all that money, we wouldn’t have spent it on that crazy trip, obviously,” Rachel said in reference to their 2015 vacation. But the Cramers had been told Garrett would never be transplant eligible. The type of heart transplants for patients with myeloma such as being offered at Vanderbilt are new, she said.
Medical fundraisers are literally a foreign concept for people living in most industrialized nations. But in the United States, it’s part of our reality. Some are fine with our current health care system, some are not, and the range of proposed alternatives can be as bewildering as the system currently in place.
The public policy conversation, though, is about the future. Life with an illness that menaces life itself is a life that’s all about the present. This moment – the only thing we truly hold in hand.
“You certainly learn how to appreciate every day that you have and not worry about small things that don’t matter,” Rachel said. “It makes you realize how important family is.”