Genetic Counselor’s Goal: Knowledge Is Power

IU Health Precision Genomics genetic counselor Leigh Anne Stout is part of a team, helping patients navigate their diagnosis and treatment.

She’s like a sleuth of sorts. Leigh Anne Stout focuses on removing impossibilities and uncovering clues. Similar to any primetime detective drama, she works with a team – all investigators of sorts.

“A typical patient in our Precision Genomics clinic is usually someone already diagnosed with cancer. We are looking for any sort of genetic differences in the tumor that we can match with a treatment. A small percentage of those differences are ones patients are born with,” said Stout, who joined the Precision Genomics team about six months ago.

Precision Genomics is a program dedicated to the integration of cutting-edge genomics – the care of patients with metastatic cancer. Stout joins a team of specialists who sequence all 22,000 genes in a patient’s genome, including genes of a specific tumor, along with healthy tissue. That research serves at the driver for a specific treatment program for the patient.

For Stout, one of two genetic counselors on the team, that research goes beyond patient care; it extends to family.

“A lot of people are concerned about their kids. That’s the number one question: ‘Is my child going to have cancer and is there anything I can do to ideally prevent or at a minimum diagnose it at an early age?’” said Stout. One facet of genetic testing is determining if a parent has a genetic predisposition to develop cancer. If so, their children are often at a 50/50 chance of being diagnosed with that cancer.

About five to 10 percent of cancers are hereditary and include, ovarian, breast, and colon cancer, said Stout, who generally meets patients when their results are complete.

“When our whole team is going through various treatment options with a patient I will talk about their germ line finding and then we usually offer confirmatory testing. I will meet with them again after that testing is complete. I will then meet with them again after that testing is complete. At that point, they have often had some time to process the information and possibly share it with family members,” said Stout. Often she meets with one of two family members; some patients will include extended family members for gene testing.

“Think of it as knowledge is power. If there is a hereditary predisposition to cancer then we may suggest medical management such as early mammograms or colonoscopy screenings,” said Stout.

“I really like working with families and helping support them through what has the potential to be very difficult information to understand and share with family members. I like knowing we’re coming up with a personalized medical management approach to caring for family members,” said Stout. In addition to helping patients understand the information they receive, she may refer them to support groups and specialists.

More about Stout:

  • She is married to Daniel Stout. They have two dogs.
  • She enjoys playing tennis and trying out new restaurants.
  • She grew up in northwest Ohio where her father still lives. She has two brothers. Her mother was diagnosed with rectal cancer and passed six weeks after starting treatment.  “When you experience a loved one going through a traumatic experience like that it shows that everyone has a unique story and a unique family story,” said Stout.

— By T.J. Banes, Journalist, IU Health.
   Reach Banes via email tfender1@iuhealth.org.

Pancreas Transplant Patient: “The Doctors Saved My Life.”

Marie Beaver has been a patient of IU Health transplant surgeon Dr. Jonathan A. Fridell for nearly 12 years. She recently spoke about a life-saving transplant that changed her life.

It wasn’t what she expected. Marie Beaver said she was riddle with fear when she first met Dr. Jonathan Fridell.

“Wow. It wasn’t what I expected. I talk too fast, I’m hyper, and I found someone who could keep up with me. He was no ordinary surgeon, He accepted my medical mess with enthusiasm,” said Beaver. And so started a long road to her transplant and ongoing healing. But the health challenges started much earlier.

In 1994 Beaver had been diagnosed with Systemic Lupus Erythematosus (SLE). She was 21. SLE is an autoimmune disease that attacks the body mistaking it for healthy tissue. Inflammation caused by lupus can affect various body parts including the joints, skin, kidneys, blood cells, brain, heart and lungs. To help treat her symptoms, Beaver had been on regular doses of Prednisone. In 2001 she developed diabetes.

“My introduction to diabetes started out with me waking up in a hospital bed and being told I’d been in a diabetic coma,” said Beaver.  “I was spending three weeks a months inpatient. My sugar would hit 500 and by 3:00 I’d be in the 30s we could not control it. It was like being punch drunk all the time. It was scary and it was medication-induced but I couldn’t stop the medication.”

There was hope.

Thirty years ago, surgeons at University Hospital performed the hospital’s first pancreas transplant on a patient who suffered diabetes. From then on, pancreas transplant became a viable option for patients like Beaver who are unable to maintain a healthy blood glucose level consistently.

For Beaver, receiving a healthy pancreas meant restoring her life. A graduate of Arlington High School, she attended IUPUI, studying psychology and started her career working at a hospital. But her illness took its toll and eventually she was unable to work.

“Through everything, my family has been so supportive,” said Beaver, the daughter of Jo and Russ Beaver. She has two sisters – Liz Fleetwood who is a nurse at Riley Hospital; and Mary Lehmkhl.

By the time she went in for her transplant she weighed about 180 pounds, was swollen, complaining of aching ribs, and was afraid to go to sleep at night because of her severe fluctuating blood sugar levels.  On October 10, 2007, she was transplanted.

“I was told it was a life or death situation. I couldn’t go on any more like I was. Dr. Fridell and the doctors at IU Health saved my life,” said Beaver. “When I woke up from transplant I felt like I was 17 again – healthy and alive.” 

— By T.J. Banes, Journalist, IU Health.
   Reach Banes via email tfender1@iuhealth.org.

‘What do you do for people who saved your kid’s life?’

Their 10-year-old son could have died on a school track that day, but a Brownsburg couple have a trio of nurses to thank for coming out of the stands to do CPR.

When Jen Murray saw her 10-year-old son go down as he rounded a turn on the school track, she first thought he was being overly dramatic after running a mile. When Brooks Murray didn’t move, his mom tamped down the fear that began to swell inside her and turned to calm one of her other sons who was sitting with her.

“I’m thinking, ‘Don’t be a helicopter mom; he’ll be fine.’ When he didn’t get back up, that’s when I headed out of the bleachers.”

Before she could get to Brooks, strangers were at his side.

———

Jennifer York, a respiratory therapist in the NICU at Riley Hospital for Children, was cheering for her daughter, who was competing in the same Brownsburg track event. She saw the boy collapse in front of her, and when he didn’t get up, she hustled through a nearby gate onto the track.

She knew immediately that it was bad. “He had no heart rate. I said, ‘call 911’ and started CPR.”

Within seconds, a friend was by her side, performing rescue breaths on the boy. Annie Newman worked as an OB nurse at St. Vincent Hospital. Together they worked to keep Brooks alive until help could arrive. Another nurse, Chris Thompson of IU Health, soon arrived on the scene to alternate with York giving chest compressions.

“A couple times (Brooks) acted like he was coming to and we would turn him to his side, then he would go limp again,” York said. “We just wanted the paramedics to get there.”

———

Brad Murray was at a church meeting a few minutes up the road when his cell phone rang once, then again. Cell service is spotty in the basement of the church, so Murray walked upstairs to take the call from his wife. All he could hear was “one and two and three and four …” The call dropped.

“I immediately thought it sounded like CPR, so it scared me a little bit, but it didn’t come to my mind that one of my healthy 10-year-olds was having a problem,” Murray said.

Jen Murray called again, telling her husband that their son was down. “You need to get here,” she said.

Brad Murray handed off his toddler son to someone in the church – “I don’t even know who it was, but I trusted everyone there” – and he and another son raced out of the building to a car driven by a church elder. “As we drove, I had Jen on speaker and we could hear the CPR.”

It was maybe a six-minute drive to the school track. In those excruciating minutes, with his wife on speaker phone and Brooks’ identical twin Clark in the back seat, Brad Murray prayed out loud.

“The first thing that came to mind was just to give Brooks to the Lord,” he said. “We’re Christian, and we believe that our kids are gifts from God to start with. I thought, God’s given him to us for 10 years and I don’t want to give him up, but it’s not up to me. I thanked God for Brooks’ life and said, ‘But Lord, we desperately would like to have him back.’ ”

———

Brooks Murray is a quadruplet, born at 32 weeks. He weighed 3 pounds, but he was a St. Vincent Hospital NICU champ, his mom says. He and his brother Isaac were the first to go home — after three weeks in the hospital. The other boys, Henry and Clark, followed their brothers home in the next two weeks. The couple also have a 2-year-old son, Hudson.

“We had these NICU babies and we thought, ‘Hey, we made it out of the NICU and everybody’s good. It’s smooth sailing now,” Jen Murray said. “This was shock for everybody.”

———-

As the three medical professionals continued CPR, Brooks’ mom stood to the side, frantic but confident in the lifesaving care her son was receiving. She remembers looking up into the stands and seeing a woman with her hands raised, praying for her son.

“We didn’t know anyone there, and these complete strangers came out of the stands to help Brooks. I remember at the time not knowing who these people were but thinking they knew what they were doing,” she said.

“My thought the whole time was I didn’t want to lose him by myself. I wanted Brad to be there. I just wanted him to get there.”

Her husband arrived just as EMTs were loading Brooks into the ambulance. By then, Brooks was breathing on his own.

Jennifer York estimates she did CPR with Newman and Thompson’s help for seven minutes. Brooks spent eight days at St. Vincent after the incident, but in that time, doctors were stumped about what caused his heart to stop.

He later was diagnosed with CPVT (catecholaminergic polymorphic ventricular tachycardia), a condition characterized by an abnormal heart rhythm. He now wears an implantable cardioverter defibrillator (ICD), a small electronic device connected to his heart that continuously monitors and helps control arrhythmia.

———-

May 3, 2017 was a rainy, cold, miserable night, Brad and Jen Murray say today. But it also was an amazing night. A night when they almost lost their son before a group of strangers came together to save him.

After the chaos calmed and their son was safe, Jen remembered how she kept seeing an RN badge waving back and forth as Chris Thompson did compressions on her son. At the time, Thompson was a cardiac nurse for IU Health; he now works in Clinical Solutions. She didn’t know if she would ever see him or the other two lifesavers again, but with help from friends and social media, the group reconnected soon after the frightening incident.

York still gets emotional when she talks about that day. Like the Murrays, she lives in Brownsburg with her family, but it took an emergency to bring them together.

“I met them when he got out of the hospital. They came to our house, brought a flower, and the kids all signed a card. It was awesome, but heart-wrenching,” she said. “It was hard not knowing how he was at first, so it was nice to have them think about us and want to thank us. Not that I needed thanks, I just needed to know that he was OK.”

The Murrays consider York, Thompson and Newman family now. They celebrated the one-year anniversary of Brooks’ rescue with them at a yogurt shop in Brownsburg.

“We wanted to take that day and make it good and celebrate Brooks’ life,” Jen Murray said. “We just keep thanking them. What do you do for people who saved your kid’s life?”

— By Maureen Gilmer, IU Health senior journalist
   Email: mgilmer1@iuhealth.org
   Twitter: @MaureenCGilmer

IU Health Has Its Own Singing Nurse

Hospice nurse Casie Williams connects with her patients through song.

Casie Williams doesn’t like to sing her own praises. But she does like to sing.

Williams, a home hospice nurse for IU Health, is known in some corners as the “singing nurse.”

Like the Michigan nurse who recently gained fame on the Internet for singing “You Light Up My Life” to a man in hospice care, Williams finds that music is a great connector with her patients.

“Music speaks to a lot of people in a lot of different ways,” she said. “For those who don’t understand it (like Alzheimer’s patients), it might calm them down. For those who don’t have energy, it might pep them up. I just think it speaks to the heart, the soul and the mind.”

Williams has been singing to her patients for years, but it was one particular patient whose story caught the attention of Williams’ supervisor, Gail Wind, who nominated her for a Care Champion award. (She didn’t win this time, but she was recognized and awarded Colts tickets for her commitment to the IU Promise, Wind said.)

Williams’ first visit with the 67-year-old female patient and her husband occurred in July 2017. Due to the woman’s Alzheimer’s disease, she would sometimes become agitated during the nursing assessment. Turns out, music calmed her.

“It was really kind of an accident,” Williams said. “Her husband always played the radio for her. I was trying to get her blood pressure, and a song came on that I sang at karaoke, so I, of course, start to sing it. She just looked up at me and smiled and just calmed down.”

After that, whenever the nurse would arrive for a visit and find that the woman was having a rough day, she would sing her a song. Sometimes they would walk together, singing, while Williams tried to get her blood pressure.

Eventually, thanks to a more effective medication regimen – and a little music – “her true sweet nature was able to come through,” Williams said.

The same could be said of Williams, who takes pride in being fully present in her visits with patients, caring for them physically and psychologically, according to Wind.

“Music and song can provide that link in our human experience of reaching out, connecting and comforting,” Wind said. “Casie’s expertise in palliative care is illustrated by her willingness to bring her whole self to the patients she cares for.”

Williams studied to be a music teacher but found her true calling in nursing. Now she combines both skills in her work.

“I believe when you have a God-given talent, you’re supposed to share it,” she said, so she sings and helps lead praise and worship at her church, in addition to singing on the job.

In September, the Alzheimer’s patient died, and her husband invited Williams to sing one last time for his wife.

At the woman’s funeral, Williams sang “Amazing Grace (My Chains Are Gone),” as well as a song at the closing benediction when the crowd of mourners joined in.

“It was a very beautiful and peaceful funeral. I was honored that he asked me.”

Williams doesn’t do any of this for personal glory. It’s about the patients, she said. That’s where it starts and ends for her.

“I start out every single day with a prayer that God uses me to shine some light and to bring someone peace. That’s why I do what I do, just to bring some peace and comfort to people. If singing to them does it, that makes me really happy. It’s my joy to be able to do that.”

— Maureen Gilmer, IU Health senior journalist
   Email: mgilmer1@iuhealth.org 
   Twitter: @MaureenCGilmer

He’s The Oldest Liver Transplant Recipient

When Bruce Anderson was denied by other hospitals, he traveled from California to Indiana to receive a liver transplant at IU Health.

They said he was too old. But Bruce Anderson wasn’t taking “No” for an answer. It’s typical of who he is. At 79, he still practices medicine, hikes and plays tennis.

When he was diagnosed with primary sclerosing cholangitis (PSC) there was no other answer. He needed a liver transplant. PSC is a chronic, long-term disease that slowly damages the bile ducts of the liver. It travels through the bile ducts to the gall bladder and small intestine. Many patients may have the disease for years and not know it. Symptoms may come and go and progress gradually until liver failure occurs 10-15 years after diagnosis.

Anderson was diagnosed Dec. 20, 2016. He and his wife Audrey will be married 56 years in December. They have three children and three grandchildren. The couple met while both were undergraduate students at Pacific Union College in Angwin, Calif. The private liberal arts college is located in Napa Valley – their home. Audrey is a nurse who has practiced in OB/GYN with Stanford Health; Bruce practices psychiatric medicine.

In part, due to their experience in the medical field, they knew there was a means to an end. They were sure they could find a hospital that would accept Bruce as a transplant patient.

“Everyone said Bruce was too old and wouldn’t even bother looking at him,” said Audrey. That is until they met with Dr. Paul Kwo, Professor of Medicine and Director of Hepatology at Stanford University. He knew both Drs. Shekhar Kubal and Marco Lacerda with the IU Health transplant team.

IU Health’s liver transplant program – the only one in the state – has been ranked fifth for volume of surgeries in the United States. Last year, 151 liver transplants were completed at IU Health including 139 adult surgeries and 12 pediatric surgeries. 

“I can’t say enough about the team at IU Health. They are world-class from top to bottom,” said Bruce. “They recruit great people who are dedicated professionals,” added his wife. 

Bruce was added to the transplant list August 24 and was transplanted on October 13. During his recover the couple is staying with friends in Ohio. Bruce said he is getting stronger every day and plans to return to his routine of hiking, playing tennis, traveling and practicing medicine. He also plans to do some public speaking about his experience with transplantation and IU Health.

“No one knows the cause of PSC. We have always been teetotalers and lived a healthy life, but when you need a new liver, you need a new liver,” said Bruce. “I guess some places just felt they should use those precious organs to save someone who has more life left to live. I am proud to be known as the oldest recipient at IU Health and possibly the oldest recipient in the nation. I hope it breaks some of the stereotypes about transplantation.”

— By T.J. Banes, Associate Senior Journalist at IU Health.
   Reach Banes via email tfender1@iuhealth.org.

Second Bout With Cancer, Ready For A Fight

Thirty-four years ago Tyler Warren was a freshman in high school when he first heard the word: “Cancer.” Now he’s back at IU Health Simon Cancer Center for a second diagnosis.

There’s a picture that Tyler Warren likes to show people. It’s a picture of a young man using a crutch. He’s standing on one leg. The picture was taken of Warren shortly after his left leg was amputated – a result of Osteogenic sarcoma.

“I was a freshman in high school. I wasn’t about to use a prosthesis because this was the only thing I had control over at the time,” said Warren. Osteogenic sarcoma, a cancer that starts in the bone, is most common in the thigh, upper arm, and shin. It is generally associated with patients between the ages of 10 and 30 – especially teens going through growth spurts. It is known to start in the ends of bones where new bone tissue forms as a child grows.

Over time, Warren embraced the use of a prosthetic leg. It gave him newfound freedom and allowed him to take part in sports he had never considered. 

He graduated from Centralia High School in 1988, in a town of about 13,000 people, named after the Central Railroad. The town was actually built where the two original branches of the railroad meet. But Warren is more interested in talking about his high school. Known as the “Orphans,” Centralia’s basketball team was once recognized as the high school with the most wins in the nation. The team reached the Illinois High School Association (IHSA) State Finals more than two dozen times (starting in 1909) and capturing multiple state championships. It was in that same high school where Warren formed friendships that continue today.

He’s returned to Centralia for class reunions, and talks often about those special people in his life.

“I was very social in high school and had lots of friends. They’re still my friends today and have helped me through some very tough times,” said Warren, the youngest in his family, including three sisters. “They looked out for me.”

He never played on that winning basketball team. In fact he never really had an interest in the sport except cheering from the stands. “I think not having an interest in basketball or baseball was God’s way of preparing me to lose my leg,” said Warren. He was 14.

Other pictures show Warren with crutches standing next to Sammy Davis Jr., and with Lisa Hartman – 80s Dynasty fame. But mostly, his pictures are with high school friends. He went on to graduate from Centralia, attended school with General Motors in Carbondale and began working as a mechanic. Later he worked as a heavy equipment operator on the I-69 construction project in Southern Indiana.

He lived in Madison for a time where he owned a retail shop and has added life events that some people only dream about – including skiing the black diamond slopes in Lake Tahoe. He’s also participated in wheelchair tennis and a billiards league. Since his freshman year of high school, Warren says he’s had 18 prosthetic legs.

He learned to find humor in the situation. When he was asked if he could run with his leg he answered: “I have no interest in running. If I need to go anywhere fast, I get in the car.” 

It is a point of pride that he talks about freely – living life to the fullest and not feeling sorry for the cards he’s been dealt.

“I wasn’t going to let it slow me down. I’ve tried to stay active,” said Warren who turns 49 in January. “I look back and I think that I’ve really made a lot of friends through it all and I’ve found the support I needed now.”

The “now” he speaks of is his second cancer diagnosis. Last summer he became ill and when he went for treatment he was diagnosed with Stage 4 Esophageal cancer. It was tough for him to swallow or keep down foods. At one point he weighed about 100 pounds, collapsed with a stroke, and spent time in a nursing home. His balance was so poor he had to learn to walk again.

At the beginning of the year Warren came to IU Health Simon Cancer Center where he is under the care of Dr. Shadia Jalal, who specializes in hematology/oncology. Every other week he drives nearly 200 miles for chemotherapy.

“I come here to IU Health in Indianapolis knowing I’ll be miserable and weak for the next seven to 10 days, but I do it because I know there’s something more to this life . . . There’s those three to four days I’m maybe 50% of what I used to be and for now that’s what’s its all about. I love life, I love nature, I enjoy socializing with people, and trying to be a good man,” said Warren. “. . . I know why this fight hasn’t ended. I’m not in charge of any of this; God is. He has a plan for me and I have a purpose. He’s not finished with me yet, and I’m not giving up.”

— By T.J. Banes, Associate Senior Journalist at IU Health.
   Reach Banes via email tfender1@iuhealth.org.

Wrapped In The Comfort Of Blankets From Joe

Sisters who remember a lonely, cold Thanksgiving spent in a Florida hospital honor their late father’s memory by collecting blankets for patients’ families.

Theresa Owens and Michele Durthaler still remember shivering in a Florida hospital while their father clung to life after a devastating heart attack.

The sisters, who live in the Indianapolis area, flew down to Florida the day before Thanksgiving in 2016 to be by their dad’s side.

“Obviously, being in the hospital anytime with a loved one is difficult,” Owens said, “but there was something very surreal about being there on a holiday when everybody else is celebrating.”

They spent their days in his room in intensive care, then spent nights sleeping on waiting room couches and sometimes the floor. Joe DeFranco, 75, passed away less than two weeks later.

“We just remember being constantly cold,” Owens said. “It seems like such a weird thing to remember, but I think your senses are heightened in times of stress.”

Last year, the sisters decided to turn a sad memory at Thanksgiving into something that would honor their father. That’s how #BlanketsfromJoe was born.

They collected blankets to provide warmth and comfort to people waiting for word on their loved ones at IU Health Methodist and University hospitals.

“Our hope is that with these blankets it will feel like a warm hug to someone going through something similar,” Durthaler said in a video produced last year by IU Health Foundation.

“We thought we might get 25 or 50,” Owens said. “We didn’t have this big vision of gathering hundreds of blankets.”

And yet that’s exactly what they did.

Thanks to help from friends, schools and charitable organizations, the sisters collected nearly 600 blankets last year. “It’s beyond what we ever imagined,” she said.

This year, #BlanketsFromJoe is heating up again, with more than 600 collected already. All donations are tagged with a card in memory of a loved one. Delivery is set for 11 a.m. Nov. 19 at Methodist.

Wrapped up in some of those blankets are stories of the givers that warm Owens’ heart.

The swim team at Westfield High School, where her daughter is a junior, donated 60 blankets to the cause in honor of a classmate who died of cancer. Members of the Fishers High School volleyball team presented a blanket to each member of the Westfield team before a game in October.

The stories – and the blankets – keep coming.

“It’s been neat to see other people take it upon themselves to help,” Owens said.

Susie Christian-Hodgson, a project coordinator with Patient and Visitor Services at IU Health, was among those who benefited from the sisters’ generosity last year. On the day the blankets were delivered, her husband was having a heart procedure at Methodist.

“Since I was going to be in a hospital waiting area, they were so sweet and wanted to include me. This meant so much.”

She later took that same blanket and gave it to her father, who is in a long-term memory-care unit. He uses it daily, she said. “What the daughters are doing in memory of their father really touches me.”

The family has started an Everyday Hero page here.

— By Maureen Gilmer, IU Health senior journalist
   Email: mgilmer1@iuhealth.org
   Twitter: @MaureenCGilmer

A Kidney Named “Joy”

In a matter of moments, Melanie Graham went from back pain to end-stage renal failure. Her story is one of multiple surgeries, the loss of a loved one and finally a new kidney named “Joy.”

Dressed in a sapphire blue dress, Melanie Graham stood at the altar of First Baptist Church in Muncie. With her father officiating, Graham exchanged wedding vows with the love of her life, Michael Graham.

The two met through a dating site around Christmastime in 2011. They were engaged four months later and married Oct. 20, 2012. Melanie was 38 and Michael was 42. It was a first marriage for both of them.

“He was the first person I met on the dating site. We both love sports and we both have a strong faith. I was addicted to him from day one. When you know, you know,” said Graham. But the day she had long dreamed about, took a turn shortly after her dad started the service. As she turned to face her guests, Graham was overcome with back pain.

“I looked at my dad and I said, ‘I can’t.’ He knew what I meant,” said Graham. There was a bench on the altar. As part of the ceremony, she was to sit on the bench while Michael washed her feet as a symbol of his devotion. As Graham grimaced in pain, her sister – one of eight bridesmaids – moved to position the bench so Graham could sit.

“It squelched my pride. I had been waiting so long for this day and then, I just couldn’t stand. I couldn’t do it,” said Graham. Her bridegroom remained calm and even joked with her. It helped ease her frustration, but not the pain.

***

It turned out that her wedding day was a day of reckoning for Graham. Fourteen years earlier she had been diagnosed with lupus. Extended complications followed but things seemed better until the beginning of 2012. When the back pain was at its height, Graham visited a chiropractor and got on with life. That is until her wedding day. The pain continued and about the time the couple planned a delayed honeymoon to Cancun, it was apparent that her health issues needed immediate attention.

It was Mother’s Day weekend, 2013 when Graham thought she had the flu. The couple raced to urgent care and then onto ER. A urine test showed that her kidneys were functioning at five percent.

“Over the next few days I ceased and coded and was in a coma for 72 hours. Then things started looking up a little more. I had never even heard of the term ‘dialysis’ before but I started three days a week, four hours at a time,” said Graham. She was under the care of IU Health urologist Dr. Jeffrey C. Ulrich. Her nephrologist is Dr. Swapna Katipally.

It was June 2013 and she was in end-stage renal failure. For six months she was in the hospital six times with infections. By November, she began consults with the transplant team and by December – just two days before Christmas, she underwent surgery to remove, not one but both kidneys.

“I’m a rare case. It’s mind blowing. People say, ‘there’s no way you could be functioning without kidneys,’ but I have pictures of both of them to prove it,” said Graham. “I lived and breathed dialysis.”

She also faced another challenge. She weighed 425 pounds. In order to be considered a viable candidate for a kidney transplant she needed to lose half of her weight.

“Through all of this, my husband was my strength. He was by my side encouraging me from the day we chose each other,” said Graham.

***

Raised in Muncie, Graham graduated from Cowan High School. Her father, Doug Gregg, is an ordained minister and together with her mother, Debbie Gregg, the couple raised three children in a close-knit faith-based home.

“I was the oldest and I was a leader. My siblings might even say I was ‘bossy.’ I was a good student but was more into having a social life.  I am very extroverted and don’t like to be alone,” said Graham.

After high school she enrolled in Anderson University and completed her degree in mental health from Ivy Tech. With a burning desire to live in Atlanta she took a nanny job and moved to Georgia for 10 years.

In July of 2014, faced with the challenge to reach a healthy weight, she underwent bariatric surgery. In April of 2017 she had a second revision surgery and reached the weight necessary to be listed for a kidney transplant. A year later she was added to the transplant list.

Just as things were beginning to look up, she faced tragedy – something she feared, something she disliked – being alone.

***

Michael Graham was born with Mobius syndrome, a rare neurological disorder that affects muscles that control eye movement and facial expressions. Because it is so rare, there are some symptoms that have not yet been fully identified, said Graham. One of those issues is respiratory failure.

In July 2018, Michael Graham was hospitalized for 12 days.  He died on Aug. 4, 2018 – a month before his wife was scheduled to receive a kidney transplant.

Sitting in her sister’s Muncie home, Graham talks about the love of her life and how that life changed without warning. She doesn’t cry. She wears a shirt with the words: “Choose Joy.” The words say a lot about who she is.

“Through marriage we chose each other. The joy comes from my faith. It is what has sustained me and it is a choice I make,” said Graham. She started her search for a kidney donor through a Facebook page, “Melanie’s Mountain, the journey to a kidney.” The page is filled with dozens of other people wearing the same “Choose Joy” t-shirt – all wishing her well as she approached her surgery. There were prayer groups at the YMCA, in school carpools, and a bible study she belonged to when she lived in Atlanta. One of those participants in the bible study saw her post on Facebook and began testing as a donor.

“She didn’t even know her blood type; she just knew that she was meant to donate her kidney to me,” said Graham, who nicknamed her friend “Sister Christian.” The Sunday before her transplant Graham’s 41-year-old friend and donor attended a prayer service led by Graham’s father. It was a moving time for Graham and her family. On September 27th Graham received a kidney from “Sister Christian” and she named that kidney, “Joy.”

“I look back and I think I have had a lot of setbacks, a lot of challenges. I’ve lost my husband at a point I’m able to live fully. I could be bitter but instead, I choose joy.”

— By T.J. Banes, Associate Senior Journalist at IU Health.
   Reach Banes via email tfender1@iuhealth.org.

She Knows Mommas and Their Babies By Name

She’s spent nearly 30 years dedicating her career to nursing – most recently with Coleman Center for Women at IU Health University Hospital. Now Rhonda Potts is retiring.

She’s seen expectant moms who return for office visits carrying newborns in their arms. She’s watched those newborns grow and welcome siblings. It’s not unusual for patients at Coleman Center for Women to seek out Rhonda Potts for a quick “hello” or a hug. She’s pretty much dedicated her career to women’s health, starting as a post partum nurse.

Over the years, she’s celebrated with women who have delivered their first child, and she’s also mourned with those who have lost their precious little one.

“A good day is when a patient says, ‘I feel so much better after talking to you.’ That’s my ‘wow’ card,” said Potts. A bad day is when we have a baby loss – someone suffers a miscarriage.” She dabs at tears as she remembers the worst day of her career – when a mom lost her infant at 37 weeks.

“It was maybe 12-15 years ago, but it could have been yesterday. It will always stay with me,” said Potts. “I am thankful that I was able to stay calm and yet cry with her. Since then she has had two more babies and she always says, ‘you people know me. I couldn’t have gotten through it without you.’”

Such compassion is what endears patients and team members to Potts.

“She’s awesome. She is a very strong leader and excellent resource for staff, patients, and doctors. She is well versed in sound clinical judgment and knowledge,” said Leisa Tremper, a nurse who worked with Potts first in ambulatory triage and then at Coleman.

“We’ve made a great tag team. When I first started as front office supervisor at Coleman, Miss Rhonda was there to teach me,” said Kay Blackwell. “And when I became interim director at one point I had to go back to Kay and ask for help,” added Potts.

Nursing was a career choice that began with a love for science, said Potts, who grew up in Central Kentucky. In high school she was president of several clubs and started nursing school at Eastern Kentucky University while she was in her senior year.

“Science was a means to an end. I started working in a nursing home when I was in high school. I knew if I could make it there I’d make it anywhere,” said Potts. “I liked bedside care but I’ve always been interested in helping people but I also like to manage and organize.”

That attribute has served her well as her career evolved. In recent years, her primary role is providing medical consults through phone calls – averaging 60 a day.

“There are many patients who don’t want to come to the office so they call and ask lots of questions or send messages through the patient portal. Sometimes, I just ask them if we can talk. I learn a lot more when I hear their voice – the pain,” said Potts. There have been occasions when patients have asked to send her pictures of their condition – that can be compromising when dealing with women’s health.

“ They don’t know me. They’re not going to run into me at the grocery store so they feel comfortable asking questions about sexually transmitted diseases, birth control and hormone replacement therapy. I’m glad they feel so comfortable but sometimes I just say, ‘you need to make an appointment and come into the office to be seen,’” said Potts. Sometimes she breaks the news to patients that their tests have come back abnormal and additional testing may need to be done.

“The main thing they want is confidence. They want to know the person they are talking to will everything she can to help them get the best care.  My job is to reassure them but also to make them understand how important it to follow through with their appointments,” said Potts.

Her caring ways have made Potts standout among her co-workers.

“I’ve worked with her 26 years. She’s sweet and kind and she’s also knowledgeable and straight forward,” said Kim Manuel, a patient care assistant. “We just love her to death and my favorite quote from Rhonda is, ‘Kim are you making the coffee or am I?’”

More about Potts:

  • She is married to Brian Potts. They have two adult children – a son and a daughter – and one grandson.
  • She will be retiring in Arizona to be closer to her children.
  • What would surprise people to learn about her? “I was a disco queen in the 70s and my husband and I have taken ball room dancing lessons.”
  • Advice to new nurses: “Pick a specialty. Decide what you want to do early on and stick with it. Learn all you can and you will excel.”

— By T.J. Banes, Associate Senior Journalist at IU Health.
   Reach Banes via email at T.J. Banes or on Twitter @tjbanes.

Do You Have Prediabetes? Check Yourself

The holidays are approaching and many gatherings are centered on food. Did you know that the choices you make could impact your chances of preventing diabetes?

Here are the facts: One in three people have prediabetes and nine in 10 people don’t know they have it. Here’s some more news – IU Health offers a free workshop to help people at risk of prediabetes, learn about those risks and how to avoid them.

Following the slogan – “It can cut your risk in half,” the workshops offer insight into who is at risk, why they are at risk, and how they can avoid diabetes.

“The year-long program is designed to help you make necessary lifestyle changes with a focus on healthy eating, physical activity, weight management, setting personal goals, and problem solving,” said Britney Merchant, diabetes program coordinator and a certified lifestyle coach. The IUHP Diabetes Prevention Program is a Centers for Disease Control (CDC) approved curriculum of 16, one-hour classes in the first 6 months of the program and an additional six classes in the next six months of the program.  Two specific goals of the program are to lose 5-7% of body weight if overweight, and achieve 150 minutes of physical activity a week.

Each week the meetings are facilitated by a Certified Lifestyle Coach and Registered dietitian and include a topic of discussion; participants are encouraged to create a support network throughout the course of meetings. The Lifestyle Coach also checks on the participants between meetings to see if they have questions or concerns.

The first program kicked off in October. The second one will begin Jan. 12, 2019 at IU Health West. In addition to the Diabetes Prevention workshop, IU Health offers free support groups throughout the city – the second Tuesday of the month from 6-7:00 p.m. – for persons diagnosed with diabetes. The next support group will meet November 13 at Nora Library. The topic: “Surviving the Holidays With Diabetes.” 

This month is National Diabetes Month – a time to educate and bring attention to a disease that impacts millions of Americans. In Indiana, Diabetes has continued to increase affecting 10.7% of the population and is the seventh leading cause of death. Research has shown that Type 2 diabetes can be prevented or delayed.

What you need to know:

  • The Best candidates to learn more about the risks of prediabetes are people with family histories of diabetes; people over the age of 40, woman who have had gestational diabetes in the past, those who are overweight, and those who have had any medical history of such issues as high blood pressure.
  • Non-candidates (those disqualified for the workshops) – anyone diagnosed with Type 1 or Type 2 diabetes; anyone who has ever been on insulin; and anyone who is under the age of 18.

— By T.J. Banes, Associate Senior Journalist at IU Health.
   Reach Banes via email tfender1@iuhealth.org.