A Friend Can Change Your World
By: Katie Miller, Kate Communicates
Above: Shara (left) and Kandy (right) in their hospital gowns, seeing each other in the hospital the first time since the surgery.
Scott and Shara Evans saw the worst of it. When they learned their good friend, Kandy Schminke, was taken to the hospital in late July, they boarded an Iowa-bound plane to be there for Kandy and her husband, Al. Neither family likely knew how quickly the situation would turn dire. Together, they waited for a barrage of testing to be completed – blood draws, ultra sounds and a biopsy. All of those tests culminated to a diagnosis no one was prepared to hear: End-Stage Kidney Disease from RPGN with coexist ANCA positive and anti-GBM positive.
“I kind of describe it as an out-of-person experience,” Kandy says. “I was sitting there, and you’re almost in a cloud. You have so much information thrown at you, and you can’t believe that you’re even in the hospital.”
It was hard to believe considering Kandy had judged a stock show the day before she landed in St. Lukes Hospital. Yet, on July 29, 2016, a simple blood panel ran by her family doctor had her admitted immediately. The nurses who read her chart told her, with those Creatinine and Hemoglobin levels, they expected Kandy to be crawling into the hospital, rather than walking in on her own volition.
For those of us less familiar with medical jargon and scientific acronyms, the Schminkes were told Kandy’s kidneys were not functioning. They had failed due to two previously undetected autoimmune disease disorders. Her body was full of unfiltered toxins, and Kandy had minutes to make some life-changing decisions, which most who suffered from renal failure could have months to ponder.
“We were just shocked and stunned,” recalls Shara. “How can something get so drastic so quickly?”
The answer was Kandy’s undiagnosed autoimmune diseases. Her body had been working overtime to fight something it viewed as a threat. The autoimmune diseases had “torched” her kidneys, as Shara puts it. Nothing Kandy was exposed to triggered the autoimmune disorders and nothing could have been done to necessarily stop her rapid renal decline.
Luckily, the doctor overseeing Kandy’s case called a peer from college, one of the most accomplished kidney specialists you could find and the person who the Schminkes call an angel – Dr. Cogdill. Dr. Cogdill wasn’t just a great specialist; he also possessed empathy only gained by personal experience. Some of his own family had been stricken with renal failure, so he knew what Kandy was facing. During those minutes when she had to make months’ worth of decisions; Dr. Cogdill guided Kandy.
“He really took care of me like I was his sister,” Kandy says.
One decision was clear though, Kandy had to start dialysis immediately to begin filtering the many toxins from her body.
Kandy recalls her first experience being wheeled into the dialysis room, because she was too weak to walk. There were only about four chairs in the hospital’s dialysis room, but as fate would have it Kandy sat next to an older farmer who struck up a conversation.
“We just started talking,” she says. “We talked about everything he had been through. He had been through so many different surgeries and cancer. I thought, if he can make it then I can too.”
Kandy never dreamed she’d end up on dialysis, but for months prior, she had been fighting the feeling something wasn’t quite right. Shara recalls, Kandy mentioning she felt off at a sale in January, and by the Team Purebred summer show in Springfield, Illinois, Kandy reported she felt even worse.
It wasn’t from lack of trying though. When Kandy seemed to be getting a lot of sinus infections, she sought out an ear, nose and throat specialist (ENT). Even after Kandy pointed out the odd patch of tan skin on her nose, the ENT deemed her condition to be allergy related. Kandy started the prescribed allergy shots, but quietly wondered how she could now have all these allergies, when she didn’t have any of these growing up.
By May, Kandy was seeing a gastroenterologist about her frequent bouts of heartburn and her increasingly unsettled stomach. In July, she returned. It was now hard to keep any foods down. Kandy was tired and couldn’t seem to find the right things to eat to calm her stomach. The digestive specialists ran some tests, but concluded it was an issue with Kandy’s throat, due to some problems she’d had in the past. They scoped her throat, and then performed a throat opening procedure.
Unbeknownst to those specialists, Kandy’s progressing renal failure, caused by her combination of autoimmune disorders, made her throat procedure not only unnecessary, but potentially deadly. No doctor connected the metallic taste Kandy often told them about with kidney disease, even though it’s a common symptom. A nurse finally suggested Kandy return to her family doctor, since the specialist’s advice didn’t seem to help.
“The day after my throat procedure, I went to my local doctor,” Kandy says. “She knows me and knows that I don’t come in unless I’m feeling really ill.”
It was this doctor who ordered the blood draw, which found Kandy’s off-the-charts Creatinine and Hemoglobin levels. Rather than sending Kandy a letter with the summary of her test, the office called her immediately and told her to get to the hospital for a blood transfusion.
“I remember that I thought it was odd, because I never had allergies, but I was taking allergy shots and still was having upper respiratory problems, which was due to the autoimmune disease which affects your nose, eyes, lungs and vascular system. The brown spot on my nose was actually my nose dying; it was dead tissue. People have gone blind due to this disease. I was very lucky that I only had a few nodulars on my lungs at that time, and I was not coughing up blood,” Kandy says. “When you look back it’s clear, if your gut doesn’t tell you that you’re on the right path, just get a second opinion, then a third. Just keep going after it.”
While watching the Schminke family reel with the diagnosis, Shara’s gut feeling was to help. This wasn’t surprising because, as the Five Love Languages will tell you, she shows she cares by acts of service. Shara Evans is a doer.
Above: (l to r) Shara Evans, her daughter, Paisley, and Kandy Schminke
When your dear friend of more than a decade is seriously ill, you want to find a way to help. For Shara, it was signing up to be a potential living organ donor. Shara didn’t know a lot about being an organ donor. She’d signed the back of her driver’s license, giving permission to pass some of her life-giving organs on after she’d passed, but she hadn’t given a lot of thought to donating one right now.
Ironically, Shara had seen the living donor promotions. She’d pushed PR pieces about living organ donors out on her local hospital’s social media platforms, when she worked in their marketing department. Without knowing anyone on a transplant list though, those posts took up more room on the content calendar than her mind.
“I was kind of passive to it,” Shara admits. “It is kind of like when you know someone with cancer, those stories pull on your heartstring more. Now, I know the need … a kidney or liver isn’t something that they’ve artificially produced. They really rely on the living donor program. I never really thought that I have two of something, and I can share one to give someone life.”
Once Kandy’s name was added to the transplant waiting list though, Shara thought about it a lot. According to the Living Kidney Donor Network, there are more than 93,000 people waiting for a transplant. Most will have to wait an average of five years to receive a kidney from a deceased donor, and like Kandy, 80 percent of the people on the list must do dialysis.
Kandy’s case was even more difficult. Her antibodies were high from the blood transfusions, and her blood type was so rare that 87 percent of the population wouldn’t be a match as her potential donor. It was clear, finding the perfect donor for Kandy could take some time. To complicate it even more, dialysis itself, while filtering toxins, also begins to shut your body down. To Kandy, it was a blessing that so many individuals came forward and went through the testing procedure on her behalf.
“We will forever be humbled by all of their kindness and thoughtfulness,” she says.
Shara hoped her kidney would be the perfect match for Kandy, so she filled out the appropriate forms online. A kit came in the mail from Mayo’s donor registry, which asked for a blood draw. Shara had it completed and mailed it back. In a few days, she received a call from the clinic in Rochester, Minnesota. Her blood type matched Kandy’s, and they needed to do further testing.
Shara flew to Rochester and underwent very comprehensive testing, which lasted three days. Unfortunately, at the end of those three days, Shara learned she wasn’t Kandy’s match. But, there was another way she might be able to help Kandy – the Paired Living Donor Program.
Mayo Clinic explains the program as, “Kidney donors and their recipients aren’t compatible for a kidney transplant. However, the donor of each pair is compatible with the recipient of the other pair.”
Shara describes it as a kidney BOGO deal. After learning she wasn’t a match for Kandy, she signed up for the paired donor program with Kandy in May 2017, and then she heard nothing.
While Shara seemed to be getting the silent treatment from the Mayo Clinic, Kandy was trying to navigate life on dialysis. While she waited for her transplant, Kandy had both common types of dialysis. For the first four months, she had hemodialysis, which was done through a port. This type of dialysis is done at a clinic.
Kandy went to Davita, a daily dialysis center. It had about 20 chairs, and in her words, you see a lot. There are diabetics who have lost limbs, and people who were very ill. In a way, that room was a reminder of just how frail and fickle human bodies can be at times. At the hospital and dialysis center, they filter the toxins out of your blood using a port placed in an artery. Each session lasts four hours, and Kandy went every other day.
Upon Dr. Cogdill’s urging, Kandy underwent surgery, while in the hospital, which placed a catheter in her lower abdomen that would take 4 months to heal before she could start doing Peritoneal dialysis, PD. At that time, she was taking classes to learn how to do PD at home, unlike hemodialysis which must be done at a clinic.
This system filters the toxins from the patient’s abdomen. Kandy would have to be hooked up to the PD machine for 12 hours each evening. To make the best of the situation, she and Al moved their bed to the main floor, and the long hose that hooked to the filter allowed her just enough freedom that she could walk around while the process was finishing.
For the last 35 years, Kandy and Al had raised livestock together. Al was the third generation to raise Chester swine on his family farm in Van Horne, Iowa, and Al knew once he married Kandy that the sheep were coming with her.
“It’s always been a joke,” Kandy laughs. “Al really didn’t like sheep, and I didn’t really like the hogs, when we started. We kept an open mind about it though, because we both love the daily grind that goes into running the operation and putting these genetics together.”
By her admission, Kandy and Al ran their lives at full tilt. They spent countless hours putting together good livestock. They both judged stock shows all over the country, and Al’s job, as a ShowTec national feed specialist, called him to various shows, showmanship clinics, dealer events and helping youth with their projects.
“The biggest thing about this whole disease was it changed our lives dramatically,” Kandy says. “I got to stop and smell the roses a little more and slow down a little.”
While Kandy says she “got” to smell the roses, being tied to dialysis forced her to. The Schminke schedule was no longer run by livestock shows; instead, it revolved around dialysis. Kandy’s rare blood type meant it would be even harder for her to find the perfect donor, and her trusted specialist, Dr. Cogdill encouraged her to register with both the hospitals in Iowa and the Mayo Clinic. With three health campuses, Minnesota, Florida and Arizona, the Mayo Clinic provides extra hope for people awaiting transplants, since their donor registry is much larger than many state hospitals.
Kandy’s first trip to the Mayo Clinic in Rochester, Minnesota, impressed her. The surgeon assigned to her case was a Texas A&M graduate who was surprisingly familiar with the livestock industry. His name was Dr. Stegall.
“They always give me the difficult ones,” he said, as he flipped through Kandy’s file.
But after setting it down, he looked right at Kandy and told her that he “got” her. Through this whole process, Dr. Stegall was the first surgeon who let Kandy know it was going to be OK.
As they left the Mayo Clinic, Kandy turned to Al and simply said, “This is where I want it done.”
Above: Kandy and her husband, Al Schminke
After months of not hearing from the Mayo Clinic living donor program, Shara suddenly received an email around Christmas, last year. The email said to log-in to her health portal to receive a message. Since it had been seven months since her last log-in, Shara couldn’t even remember her password. When she finally opened the message, it said they had found a match for Kandace and Shara was needed to donate through the donor pairs program.
Shara vividly remembers thinking this was the first time she’d ever heard Kandy referred to by her full name, and the surgery was scheduled for Jan. 22.
In Iowa, Kandy had received the call about the potential pair donation earlier that morning. She was truly excited about this revelation, but by this point, Kandy had already had two other calls about potential donors that didn’t work out at the last minute.
“I guess it was something you prayed for every day,” she says. “I was excited because I thought with the kidney pair program that our chances were stronger that it can go through, but it was just so hard to see the expressions on people’s faces, when it didn’t go through, in the past.”
Kandy asked Al to keep it quiet that there might be a potential match, so people wouldn’t get their hopes up too high.
While Kandy was cautiously optimistic, the Evans family home, in Ohio, was receiving box after box from the Mayo Clinic with instructions for more blood draws and tests. Shara would complete the test locally and have it sent back to Rochester. While it might seem that three weeks are quick, Shara says they were also agonizingly slow. Her and Scott wanted to get the surgery over with and see Kandy on the mend as soon as possible. Each Mayo box that arrived proved they were one step closer, but it could also be the test that would eliminate Shara from being a match for the kidney Kandy was paired with.
While Shara knows it sounds extreme to give one of your organs, she doesn’t consider herself brave and wouldn’t say she was overly scared. She avoided Googling the procedure. Instead, Shara treated it much like the birth of her daughter, telling herself that these doctors were professionals, and they get these things out all the time.
The morning of the surgery, Kandy rode to the hospital in complete silence.
“That actual morning that we loaded up to go, that’s the first time that I thought it could actually happen today,” she says. “I was pretty quiet, because I kept waiting for the other shoe to drop.”
No other shoe dropped on Jan. 22 though, both Kandy and Shara were whisked away to surgery. Shara recalls waking up in recovery feeling like she’d done 5,000 crunches. While she will admit, she’s never actually done 5,000 crunches, Shara adds the discomfort wore off in less than a week. Kandy’s first memory was a little hazier. In recovery, the nurses were having a hard time getting her low blood pressure to raise to a normal range, so they put her in ICU. Her family waited an agonizing nearly 12 hours to see her, but when they did, one of the first things she asked was how Shara was doing.
Now, a few weeks post op, both Kandy and Shara are growing stronger every day. In fact, they often have to remind themselves of the 10-pound weight limit, and their scars are healing.
Al laughs at Kandy’s cravings – Pepsi and peanut butter toast. While dialysis limited the amount of Phosphorus Kandy could have, a real kidney needs those nutrients. After months of bland, restricted diets, Kandy is enjoying a doctor-prescribed Pepsi a day, and peanut butter toast tastes like prime rib.
“This has been quite a journey,” Al says. “There have been lots of people who have been willing to help. It brings out the best in people; I tell you. It’s one of those deals where you get challenged, but it just makes you stronger.”
Kandy is still facing challenges. The first six months of a transplant are the most critical, and her immune suppressant medications make it hard to be around people in case she would get sick. She also must stay away from saw dust and dirt for the time being, which makes raising livestock a bit hard. Kandy doesn’t know what will happen in the future. But, she feels blessed to know that one autoimmune disease died with her damaged kidneys, and the other is currently gone too with little chance of reoccurrence. Most of all, she is humbled by the amount of good this has allowed her to see in the world, and the countless people, including Shara, that would literally share a part of themselves to help her heal.
“I wouldn’t have made it through without our family and friends that were always there to help,” Kandy says. “Our children, Cody and Chelsea, and their spouses, Taylor and Paul, did whatever that was needed without a question.”
Of course, Kandy’s husband, Al, served as a source of strength through this entire journey.
“Al was a true rock that was by my side through the good and bad, always encouraging me. He would hold my hand through the rough stuff and look at me saying, ‘We will get through this,’” Kandy says. “There were many tears and days that were tough but looking at my family and grand baby only made me want to beat this more.”
After everything, the Evans family who’ve been the Schminkes dear friends for decades, now seem closer to family.
“My thoughts are with Scotty and Shara and all the sacrifices they made for us,” Kandy says. “Al and I just feel so blessed that they’re in our ‘family’ and part of our lives. They’re a blessing.”
Shara simply remains in awe of Kandy’s strength, determination and fortitude.
“Her optimism through it all was just completely unwavered,” she says. “If I were to get sick and get handed that news I would have just curled up in a ball and stopped fighting. But, there were no gray areas, she was going to get better.”
Shara’s husband teases her that she has cried more in the last few weeks than their entire marriage. Her tears weren’t out of sadness though, Shara says it’s just amazing to help other people. Her kidney went to a 27-year-old man whose mother wrote Shara about how much it had changed their life. In total, more than 11 people received transplants in the living donor pair chain Kandy and Shara were a part of. Ironically, this whole transplant chain started with one person who just wanted to donate a kidney and didn’t know anyone to donate it to.
After surgery, Kandy gave Shara a card she wrote during her time in the hospital. Shara can’t read it without coming to tears, she always chokes over the most powerful line.
“Surgery morning, I didn’t know exactly what to say other than, ‘Thank you for giving me my life back,’” it reads.
On her desk sits a photo Kandy’s sister took. It’s a photo of Shara and Kandy seeing each other in the hospital the first time since the surgery. They’re both wearing their hospital gowns. At the bottom, her sister wrote, “One friend can change your whole world.”
Above: The Schminke Family