In their long wait for a kidney, a Winona-area family tries to be ‘strong and brave’
Cher Hang loves the weekend.
Now that her sons play basketball, she tries to make it to their games on Saturdays. When she can’t, she pops in a movie or looks forward to family time later in the evening. Two days uninterrupted, all to herself, to spend however she’d like.
But when Monday rolls around, it’s back to reality — a reality that begins at 5 a.m. sharp at Winona Health’s dialysis unit.
Hang was diagnosed with IgA nephropathy, a form of kidney disease, as a teenager. Her doctor told her she’d likely need to begin dialysis treatments in her mid-20s. At 31, she’s been receiving the treatments for five years.
It’s a grueling, $3,000 apiece process that she shows up to three times a week for three hours each day. A machine that acts like a healthy kidney takes her blood out of her body, cleans it and sends it back. Before it begins, she’s swaddled in a blanket and nestles three “water babies,” rubber gloves filled with warm water, against her arm, her stomach and the crook of her neck.
When the needle sticks into her upper right arm to begin drawing, she looks away and winces.
“Knowing that people are judging you, your body is changing, you’re not yourself, you have no control over that — it’s really hard,” Hang said.
And it’s harder when there’s no end to the struggle in sight. Hang has been on the national waiting list for a kidney transplant — to date, it tops 95,000 people — for as long as she’s been in dialysis, and her doctors and nurses at the Mayo Clinic in Rochester have begun to urge her to seek a live donor.
Waiting for a kidney from the transplant list, which would come from a dead person, involves a delicate dance between blood types, antibodies that certain recipients must stay clear of and staying healthy enough to reduce the risk of problems with the transplant process. Meanwhile, dialysis takes a toll on an individual’s bones, muscles, joints and in some cases, their mental health.
And even dialysis can’t last forever. “Just do it until you die,” Hang explained.
She’s one of about 32 patients that the dialysis unit at Winona Health serves, according to department manager Emilie Volkman. Even patients with little insurance coverage get fully reimbursed for their costly treatments through a formula from the Centers for Medicare and Medicaid, but Volkman said that payment rarely covers the full cost for Winona Health. The hospital turns instead to a special fund recently created to ensure that they can still offer the treatments.
When she first started dialysis, Hang said she looked actively for a donor, asking family and friends and posting on social media. The life of a kidney from a live donor can be up to 20 years, much longer than the 10 to 12 projected for a kidney from a deceased donor, according to Lynette Fix, the nurse care coordinator at the Mayo Clinic’s Transplant Center.
But when a year passed and she’d struck out on all of her options, she all but stopped trying, turning her focus toward getting through each day with the support of her boyfriend, Lue Vue, and their children, Isaac and Aydein.
“My kids push me a lot. Just telling me, ‘Mommy, it’s going to be all right,’” Hang said. “It makes me want to fight.”
Like any serious illness that persists long term, however, it has also begun to wear on her loved ones.
‘I just try to be strong’
Vue, whom she met in high school, drives her to and from dialysis appointments, after which she is too exhausted and nauseous to drive herself. In those three hours, he returns home to get the boys up and send them off to school. He used to sit with her through the treatments, Hang recalled, but it made him too sad to continue coming.
Going through the ordeal of Hang’s illness has made him more patient, he said. When, on occasion, her muscles are too weak to grip her own toothbrush, he even brushes her teeth.
“I just try to be strong,” Vue said. “I don’t really want (my kids) to see me being all down and stuff, because if I do that, the whole family would be down. There has to be someone who has to be strong.”
And Vue isn’t the only one who has to be strong.
Isaac, in sixth grade at St. Stan’s Elementary, is “a ray of sunshine,” according to his teacher, Suzanne Ubl. And Aydein, a fifth-grader, enjoys sports and loves to make people laugh. But Hang said she sees how her prolonged illness has affected both of them.
St. Stan’s Director of Student Life Marcia Mihalovic meets with Aydein every Monday and Friday, as well as Isaac on a need-basis, to allow them to talk through their emotions. She said the biggest thing she’s learned to do for them is listen.
“They want somebody just to hear them and not to judge what they’re saying,” Mihalovic said. “I don’t need to fix it. I just need to be there.”
The rest of the school community has taken “being there” to heart, she added. Not only did the boys’ classroom teachers step in and provide after-school help when they struggled with schoolwork, other kids in class consistently show up for the Vues and let them know they care, even when things are hard.
In recent months, Aydein has had problems with self image, noted fifth-grade teacher David Skeels, “that he doesn’t feel he’s worthy, he’s smart.”
“We work a lot with positive reinforcement and encouragement, letting him know even if he’s going to be negative, we’re going to keep pumping him through with positives,” Skeels said.
Though they’ve learned to be more independent than other children their age, the brothers still find time to be kids, playing video games and showing off various ribbons won at sporting events. But they’re thinking of their mom a lot.
“I tell her to stay strong,” Aydein said, gripping a wooden painted sign. “My teacher got me this for my mom last year. ‘Strong and brave.’”
He looks at it when he needs a reminder of that, too.
‘One day, we can’
With renewed energy to search for a donor, Hang said the pieces can fall together easier than one might think. Not only can an individual lead a perfectly healthy life with just one kidney, she explained, the waiting list for a prior donor should something happen to their remaining kidney is just two months. Her insurance would also cover the full cost of the donor’s surgery.
Because of the Mayo Clinic’s paired donation program, a donor doesn’t even have to match the blood type of their recipient, explained transplant coordinator Fix. If Hang’s potential donor didn’t match her blood type, for example, that donor would donate to another person on the waiting list, and a donor with the correct blood type would be matched with Hang.
The clinic has done over 400 transplants that way, which takes three to six months to coordinate but can speed up the process so that a recipient doesn’t have to spend a prolonged period of time finding the perfect match.
Once the transplant surgery wraps up and the new kidney is in place — leaving the non-functioning ones to shrivel up to the size of acorns — the patient risks only about a 10 percent chance of rejecting the kidney, Fix said. From there, they must stay in good health and commit to regular doctor’s appointments.
“It’s kind of a lifelong medical management,” Fix said. “They’re trading dialysis for medication and medical visits.”
Until further notice, though, Vue and Hang will continue to make the trip to the dialysis unit before the sun rises. When she’s not feeling too sick afterward, Vue picks up a hot breakfast from the hospital cafeteria for them to share before he takes her home.
“Through thick and thin,” Vue said. “Some people just say through thick and thin, but they don’t really go through it that much. We’ve been through a lot together.”
If she’s able to find a donor and undergo a successful transplant, Hang said she hopes to start a support group for other, younger dialysis patients like herself, to give them an outlet to connect with each other and eliminate feelings of isolation.
And she encourages Vue, her boys, and even herself to keep looking toward the future — a future that could hold a trip to Hawaii, a return of her jogs around Lake Winona and several well-deserved family game nights, with lots of rounds of Uno.
“Sometimes they do ask me, ‘Mom, why can’t you come to this?’ or, ‘Why can’t we do this?’ And I have to explain to them, ‘I don’t feel good, we can’t,’” she said.
“But one day, we can.”