Jennifer and Thanh Huynh have an ordinary living room with couches, tables, and a complete set of Harry Potter books. The only mismatched furniture is a massive hemodialysis machine that lurks in the corner. 

It’s for Jennifer, who was diagnosed with IgA nephropathy three years ago. While most couples spend their evenings watching television and visiting friends, Thanh and Jennifer bond over hemodialysis.

Before the illness, Jennifer and Thanh used to be students at Wichita State. He was student body president and studying political science; she was studying dental hygiene. They met through the Vietnamese Student Association, and fell in love. Two years later, they were married. But after a few happy years together, something went terribly wrong. 

At first, Jennifer thought weight gain caused her feet to swell. But when her stomach began leaking fluid through her pores, she knew it was more serious. Her doctor only confirmed her fears.

Jennifer had a choice—allow her kidney to slowly fail, or take medications that haven’t been proven to work and cross her fingers. 

She chose medication and began taking immunosuppressive drugs. Unfortunately, that means she’s more vulnerable to disease. She’s been hospitalized multiple times after a common cold has morphed into pneumonia.

“It seems like when one part of your body breaks down, everything else seems to follow suit,” Jennifer said.  

With IgA, full kidney deterioration takes an average of 20 years, according to UNC Kidney Center. In Jennifer’s case, it was two months. 

Today, the doctors know her by name, and surgery has become a routine; she lists each operation on a spreadsheet that she brings to doctor appointments. The page is completely full. Jennifer has been in surgery 27 times for everything from minor procedures to heart surgery to remove a tumor.

“I always make fun of my surgeries saying, ‘You’re building me a roadmap on my body,’” Jennifer joked. Each surgery has left a mark, a souvenir from another day under the knife. Last Friday, she had her 28th surgery—gallbladder removal. 

The couple decided to tell only the essential people about the illness. IgA is a disease that’s still being researched, and they didn’t know how serious it would be. They didn’t want to be treated differently, or to make friends uncomfortable. 

“It’s pretty helpless for your friends and family to hear what was going on. They don’t really know what to say or what they can really do,” Thanh said. But eventually, the hospital bills began to hit them hard. 

Because of her illness, Jennifer was released from her job, and hasn’t been able to work for a year. Thanh never officially graduated. He has two classes left to complete his political science degree, but returning to school isn’t an option. As the breadwinner, he works long hours at Spirit AeroSystems to pay the hospital bills.

Jennifer’s been waiting for a new kidney for two years, and she’s finally at the top of the list at Kansas University Medical Center in Kansas City. They don’t know when the surgery will be, but they know it’ll be a drain. After the surgery, they’ll need to stay in Kansas City for two weeks, and return every week for six months. Thanh will take off a month from work to care for Jennifer, who will need to take $300 worth of medication each month for the rest of her life. 

“We didn’t feel like asking, but we got to the point when our situation needed a little extra help,” Thanh said.

 Last month the couple went to Indiegogo, a site that calls itself “the crowdfunding solution that empowers ideas and enables people to donate funds easily.” Anyone with Internet can donate to the campaign.

The campaign is called “Help Jennifer before she gets her kidney.” Since Indiegogo charges 9 percent of the funds if the campaign doesn’t meet its goal, they asked for the bare minimum $4000. With 15 days left before the campaign’s end, they’ve raised $370 above their goal and hope to raise more. The money is enough to get them through the operation, but they don’t have much extra if anything goes wrong.

The donations range from $5- $200, and 103 people contributed. Most are friends and family, but many are strangers affected by IgA, or people who just want to help. Jennifer has tried to personally thank each donor, and wanted to emphasize her gratitude in this article.

On New Year’s Day, Thanh and Jennifer got a phone call—there was a kidney with Jennifer’s name on it. But with a fever of 101 degrees, she couldn’t have the operation and the kidney went to someone else. Now they’re at the top of the list, living on pins and needles until another match comes along. 

“It’s pretty much living your life on the clock,” Thanh said. “You’re just waiting for that call.”

Even if there’s a kidney available, nothing is guaranteed. The couple have heard stories of people being rejected when they’re on the operating table. If Jennifer is an hour late taking her medication, the kidney could be rejected. Even if everything goes smoothly and the IgA goes into remission, recurrence isn’t unlikely. 

For now, Jennifer and Thanh continue waiting for that phone call. They say the illness has strengthened their relationship. Things that other couples argue about seem trivial after all they’ve been through. 

“We have each other, and a lot of times that’s what you have no matter what,” Thanh said. 

You can donate to Jennifer and Thanh’s campaign by going to indiegogo.com and donating.