This has been hard, she said, physically and mentally. She hasn’t had much of a summer this year between working to pay her bills and recovering from the taxing treatments. But all of that changed the day she got a call saying that she was approved for a kidney transplant.

The donor? Her brother, Shane, 32, of Saranac Lake.

Shane has offered up one of his kidneys to his older sister, an act she calls “selfless” and “a gift.” The transplant is scheduled for Oct. 15 at Massachusetts General Hospital in Boston.

The transplant is a massive undertaking for both of the siblings. Beyond the physical weight of surgery, the expenses associated with the operation and recovery are set to cost them tens of thousands of dollars.

Jennifer Riley, left, and her brother Shane, right. (Provided photo)

Jennifer’s third-cousin and best friend since kindergarten, Alexandria Patnode, has started a GoFundMe for the two. The crowdfunding campaign, “Support for Jennifer’s Upcoming Kidney Transplant,” can be found at tinyurl.com/2uxv9txk.

“The main goal is to get my life back,” Jennifer said.

Her daughter, Jillian, is 10 and always wants to “go, go, go.” Jennifer said it has been difficult to not be able to do everything she wants to for her daughter.

Jennifer sees people doing things with their kids on social media and she feels like she’s missing out on those memories and experiences. She said she can’t wait to catch up on all of these things. One of the main things she misses swimming — Jillian loves to swim.

Jennifer hears a kidney transplant can be like night and day in terms of restoring quality of life after kidney failure. It’s the only treatment.

Having a highly-sensitized immune system, her chances of finding a match are low. If Shane wasn’t a match, the wait list for a kidney matching hers could have lasted up to six years.

Immediate family members tend to be a patient’s closest chance for a match, Jennifer said. Her parents are too old to be candidates, but Shane never hesitated and offered to be a donor right away.

“You don’t find that many people that just are willing,” Jennifer said of Shane.

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Siblings

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Being a donor will take a toll, financially and physically, Jennifer said.

It took around one year to go through all the vigorous physical and mental health testing that’s required. The entire time, they were anxiously waiting for the results and constantly checking in. One day, Jennifer got the call and immediately called Shane.

“‘We’re approved! We’re approved!'” she remembers shouting. “What felt like it was not going to be around for a long time suddenly became a reality that was going to be happening in the near future.”

This was a massive relief for her at a time when she was finding it increasingly hard to stay positive about the future. Shane was excited, too.

Jennifer said she’s always been close with Shane, who is two years younger.

“We’ve learned to be friends and family at the same time, because we are so close in age,” she said.

They each attended Paul Smith’s College for a time and he’s currently renting her house while she lives with their parents, who help with her dialysis treatments.

Their father Lawrence said the illness has been tough on their family and that he is very proud of his son.

Jennifer’s been worried about her life and her daughter’s life for several years, but recently, she’s been more worried about her brother Shane. She was blown away by his offering of a kidney, and though there is no expected affect to the life of a donor, anytime someone is going under the knife is concerning, she said.

He’s a “man of few words,” she said, but sensitive. Shane’s wife recently was stationed out-of-state with the U.S. Air Force, so Jennifer said she’s making sure he has all the support and love he needs.

They’re feeling a mix of excitement and anxiety. The surgery is all she thinks about right now.

Shane could not immediately be reached for this story.

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The cost and the campaign

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The costs associated with this operation are expensive. They’ll need to pay for travel, lodging and food during the month-long recovery in Boston — all while having no income.

She is anticipating it could cost at least $25,000. None of these costs are covered by insurance. Jennifer said it could take up to 12 weeks to return to work after the operation.

After the operation, they’ll both need to stay in Boston for at least a month at an extended stay rental. These are very expensive in Boston — Jennifer said they’re looking at $300 per night at minimum.

Even with the crowdfunding campaign, she is anticipating going into debt for this transplant.

It’s been overwhelming and a nightmare for her thinking about the money, she said.

While undergoing dialysis treatments she said she’s only making half of what she would normally make and she’s living paycheck-to-paycheck in terms of paying her bills now.

“I was stressing me out a lot, thinking about how, financially, we’re even going to make it happen in two months,” Jennifer said. “I think that the GoFundMe has created a little bit of a release on that stress for me.”

Jennifer said she didn’t want to set the GoFundMe goal too low or two high and settled on $10,000.

“For a while I was afraid to ask anybody else,” she said.

She was not sure how willing people would be to donate. There are so many of these medical cost fundraising campaigns out there, she imagines people probably get sick of seeing them, or ignore them. But she said she needs any help she can get.

Her social worker at the hospital tells her that after insurance coverage and other programs to cover costs, they recommend crowdfunding for medical payments.

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What is lupus?

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Jennifer learned she had lupus when she was pregnant with Jillian a decade ago. It was under control for many years, but in 2022, she had a flare-up and was airlifted to Albany with a pericardial effusion — a large amount of fluid around her heart. She underwent chemotherapy for three months, but her kidneys failed.

Lupus is an autoimmune disease which essentially tricks her body’s immune system into attacking healthy antibodies and healthy cells.

The disease is known as “the cruel mystery” because even medical experts are still uncertain of what causes it. There is also no known cure.

Jennifer doesn’t know what caused that flare-up two years ago. Causes of flares can be stress, lack of sleep or just long exposure to the sun.

Antibodies are meant to attack “foreign invaders” in the body, preventing harm by producing a fever or inflammation to protect the whole. The problem lies in that her immune system does not recognize what is a foreign cell an what is not. This causes inflammation, swelling, joint pain, fever, rashes and fatigue — almost like having the flu, Jenifer said.

In her case, it attacked her kidneys.

Usually kidneys work all the time. People drink liquids, they get processed by the kidneys and waste is expelled. For people in renal failure, they only get that when in dialysis.

Right now, dialysis is the only thing keeping Jennifer alive as the machine maintains volume and removes toxins. All blood comes out, gets filtered through a dialyiser and is pumped back in.

Jennifer and Shane are preparing for pre-op appointments in Boston. After the surgery, she will need to go to monthly check-ups in Boston for the next six to 12 months.

Jennifer said she will need to monitor her kidney function for the rest of her life and take immunosuppressive drugs.

But with her brother’s kidney, she’ll finally be able to live her life, swim with her daughter and put dialysis behind her.