Track ready? Don’t forget the sunscreen

The FDA has new guidelines on sunscreen. One patient talks about the importance of protecting your skin.

It’s May in Indiana and already the temperatures have spiked in the 80s with the sun beating down. Hoosiers are more than ready to soak up some of those rays.

Before heading out into the sunshine, consider this: Skin cancer is the most common form of cancer in the United States. Statistically, 1.6 new cases are reported annually. The Centers for Disease Control and Prevention reports three types of skin cancer: basal cell carcinoma, squamous cell carcinoma, and melanoma. The most common, basal cell carcinoma doesn’t spread and can be removed in a doctor’s office. Squamous cell can spread quickly and can be treated if caught early. Melanoma is the deadliest and can be difficult to treat if it isn’t caught early.

Matthew Douglass, Muncie, was 30 years old when he was diagnosed with an early stage of melanoma in February 2013. His mother was also diagnosed with melanoma in her 20s and had the spot surgically removed. Douglass, who is a red head with fair skin, said his spot started as a small freckle on the back of his neck and began changing colors. He had surgery to remove the spot and continues to have check ups monthly. He is also diligent about wearing sunscreen, a hat and long sleeves when he’s out in the sun. This month marks his five-year check up with an all clear.

“It’s important to protect your skin no matter what your skin tone. You can do that by applying sunscreen, wearing hats and protective clothing and seeking shade to limit your time in the sun,” said Becky Butts, coordinator of community education cancer services for IU Health Ball Memorial Hospital. “Looking for sunscreen can be overwhelming. Here are a few things to know – be sure to use broad spectrum – giving you protection from both UVA and UVB rays and be sure it has an SPF of at least 15,” said Butts. Some doctors suggest at least a 30 SPF for maximum coverage. She suggests applying sunscreen about 30 minutes before heading outside. “Watch for changes in your skin. If moles or other areas on your skin are new or changing, see a healthcare provide.”

Dermatologists recommend reapplying sunscreen especially to sensitive areas exposed to sun such as the face every two hours.

The FDAs recent requirements for sunscreen are intended to ensure that over-the-counter products meet standards to provide maximum protection. The proposal focuses on maintaining safe and effective sun-blocking ingredients such as zinc oxide or titanium dioxide.

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

This nurse is a rock star

Nurse Kasey Smotherman is known around the bone marrow transplant unit for her unique rocks and encouraging messages she gives to patients.

Enter the room of a bone marrow transplant (BMT) patient at IU Health University Hospital and chances are there will be a picture on the white board with a whimsical message: “Cell-abrate,” “Take a Cellfie,” “Tired of your current cell provider? Try BMT.”

One patient who recently received CAR-T cell therapy found this message: “Cells of mass destruction.”

CART-T gene therapy uses custom-made cells to attack a patient’s own specific cancer. CAR-T cell therapy allows doctors to isolate T-lymphocyte cells – the body’s cells that fight infections and are active in immune response. The T cells are then engineered to express a chimeric antigen receptor (CAR) that targets a protein on a patient’s cancer cells, attaches to them and eventually kills them. Indiana University Health is the only site in Indiana to administer the treatment.

Who is responsible for those uplifting messages during what could be a patient’s darkest days? Nurse Kasey Smotherman, 35.

“When I started here I worked night shift. You don’t see a lot of transfusions because they do it during the day, so after midnight I’d sneak in and do a drawing on their board,” said Smotherman, who became a nurse after her husband’s sudden death at the age of 34. She worked as a pharmacy tech before that.

“My mom had been sick and I took care of her and people would say, ‘you’d make a great nurse.’ Then when my husband passed I figured life is short so went to nursing school.” Said Smotherman, the mother of three children ages 16, 14, and eight. IU Health was her first job out of nursing school. She obtained her bachelor’s and master’s degrees last year and is now working on her MBA.

Not only does she leave her patients cute messages; Smotherman also gives them brightly painted rocks – an idea generated by one of her former patients.

“We had a patient in her 20s that I was close to. She ended up passing and I went to her funeral. They talked about how she and her children painted inspirational sayings on rocks and left them around town,” said Smotherman. “At the end of the funeral everyone got a rock to paint and give away and I thought I can do that for my patients. She was such a positive person even when she was sick so I wanted to carry that on in her memory.”

Smotherman recently visited a patient Jenise Bohbrink with a shiny silver rock with the message: “Jenise, each day around the clock, always remember that you rock.” Bohbrink was diagnosed August 31 with non-Hodgkin’s lymphoma. She is married to Brent Bohbrink and they have two children Averi, 6 and Owen, 4. Her brother Travis Platt is her bone marrow donor.

“Some days it’s really hard and it’s the little things that brighten your day,” said Bohbrink, 38. With a nursing staff of about 20, Smotherman said it’s easy to get maintain the continuity of care and it’s also easy to get attached to patients.

“I don’t want a lot of credit. I just do what I think needs to be done to brighten their day,” said Smothernman. Once a patient receives a bone marrow transplant, they celebrate new life – a birthday. With Smotherman’s help the Bone Marrow Transplant unit recently learned that Be The Match, operated by the National Bone Marrow Transplant Program, will provide party supplies for the birthday celebration.

“I accidentally applied to work in bone marrow transplant. I knew nothing about it but I did the interview and then a job shadow and fell in love with it,” said Smotherman. “I feel like our patient population is so appreciative and grateful to our nursing staff and we all love what we do.”

More about Smotherman:

  • She has played classical piano since the age of 13 and also played clarinet in high school.
  • Her motto: “Life is short.”
  • She said her mom; Joann Birtchman has been her greatest supporter through nursing school.
  • She also has a twin sister, Carla Huff, who lives in Greencastle.

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

She gave him a mom; He gave her a kidney

Amy Faure and Michael Crohan adopted their son Michael Crohan when he was four. Now 17 years later, Michael donated a kidney to Faure.

There’s an awe-inspiring story behind Amy Faure’s kidney.

First there’s the chapter about how she and her husband, Craig Crohan met. Both families lived in the Shorewood Forest housing development near Valparaiso. Both families were victims of burglary. Faure’s brother, Lloyd Stonewall “Stoney” Faure was killed during the break in on Jan. 6, 1981. Two perpetrators were found guilty of murder by a Porter County Superior Court judge.

“It was through the trials that Craig and I became acquainted. He was my brother’s friend,” said Faure. The couple married 39 years ago.

Amy is one of the last in a long line of the Faure family so she opted to keep her maiden name. She serves as President and CEO of Faure Brothers Corporation, Calumet City, IL. The warehouse management system was founded by her grandparents in 1906 and was later operated by her late father Emile F. Faure. Crohan serves as executive vice president of the company. Together the couple made a life around the family business.

Then in 2000 Faure’s acute kidney failure resulted in her first transplant. Her donor was the husband of one of the company employees. A year later the couple became foster parents.

“We were work-aholics and decided there was more to life. It was life changing,” said Crohan. Their first child was a four-year-old boy named Michael. They later adopted Tyler, 17; and Chris, 20.

In 2011, Faure again faced kidney failure and received a second transplant from a best friend. IU Health’s Dr. William C. Goggins was her surgeon. For nearly seven years, Faure’s life was back to normal raising her three boys, traveling and antiquing with her husband, tending to their two-acre lakeside property, planting flowers in some 100 pots.

Then her kidneys began to fail again. For 13 months she was on peritoneal dialysis 15 hours a day. She needed a new kidney.

Her youngest son, Michael wanted to be her donor. A strapping 6-foot, 190-pound athlete, Michael graduated from Wheeler High School in 2015 and went on to play football for the Manchester University Spartans.

“It was scary having him, one of my babies want to be donor,” said Faure. “When he talked to the social worker they asked if he was sure,” added her husband.

For Michael Crohan there was no hesitation.

“I was lucky enough to be adopted by the most amazing, caring selfless parents out there. So I grew up knowing about my mom’s kidney disease and I always told myself if there was ever a chance for me to give back to the ones that have given me anything and everything to change my life in a heartbeat, I would,” said Crohan. “When I found out I was a match I immediately called my mom and we both broke down in tears.”

On April 19, again under the care of Dr. William C. Goggins, Faure received her third kidney transplant.

“The way I look at my mom is she’s the closest person in my life so donating a kidney to her doesn’t only benefit her but everyone else in her life,” said Crohan. “She is always looking and worrying about everyone else first and this is an opportunity to make sure she is around for my wedding, when I have kids and other major events in my life. Donating a kidney to her means everything.”

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

Art therapy rockin’ the bone marrow transplant unit

As a form of art therapy bone marrow transplant patients are contributing to an inspirational rock garden.

The message is simple: “I am strong.” It stands out boldly on a bright orange background. Olivia Johnson holds the rock flashing the same bright orange painted on her nails.

Orange represents leukemia awareness. Johnson, 43, was diagnosed with Acute Myeloid Leukemia (AML) Oct. 4, 2017. AML is a cancer that starts in the bone marrow and moves into the blood and sometimes other parts of the body – liver, spleen and central nervous system.

“I had a high fever had been at work all day. The girls said I didn’t look well. I didn’t want to go to a clinic because you have to wait two hours. I put up a fight,” said Johnson, who works for IU Health Bloomington.

She didn’t know it then but the fight had just begun.

“I went in and a nurse practitioner was working. I told him I thought I had strep. He ran tests for strep and mono and ordered a blood draw. In 45 minutes he called and told me that I have leukemia. I thank God every day that he was on call that weekend,” said Johnson, the mother of a daughter, 26, and two sons 24 and 22. She has one grandchild and three more on the way – her middle son’s wife is expecting twins.

As a patient of hematologist/oncologist Dr. Sherif S. Farag, Johnson is seeking treatment at IU Health’s bone marrow transplant unit. She is participating in a special project conceived by IU Health CompleteLife art therapist Lisa Rainey – a rock garden.

“I want the rocks to be inspirational for both the patients and future patients,” said Rainey. Rocks are hand painted by patients and include personal messages and words such as “faith,” “hope,” “love,” and “family.” Rainey will take photos of the rocks then string the messages like garland throughout the bone marrow transplant unit.

“It’s a way to encourage them to fight and not give up,” said Rainey. Along with patients, caregivers, a chaplain and a pharmacist have also added to the collection.

Johnson had her first bone marrow transplant Feb. 21, 2018.

“I was in remission I was going for my monthly check ups everything seemed to be fine and then Jan. 9, 2019 they drew labs like usual and I had relapsed,” said Johnson. On April 2, she had her second transplant. Her youngest son was her donor.

“I have overcome so many things in life. I got pregnant at 16 and had daughter at 17. I was a junior in high school when I had her. I set my mind to finishing school and I did,” said Johnson, who is married to Todd Johnson. As a mother of three grade school children, she went on to obtain her associate degree. In 2016 she achieved her Bachelor Degree in Business.

“I think leukemia is just another hurdle God has put here for me to jump over,” said Johnson. “Like my message on my rock – ‘I am strong.’ I have my down days and I don’t think I’d have gotten this far if it wasn’t for my amazing team members at work. They are constantly sending cards, text messages, gifts and coming to visit. I’m determined to beat this.”

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

This bulldog needs a kidney

Michael Kaltenmark has made a number of visits to IU Health Riley Hospital for Children. His sidekick the Butler Bulldog mascot always accompanies him when he visits young patients. But now, Kaltenmark is spending time at IU Health University Hospital where he is on a wait list for a kidney transplant.

It was two former IU Health doctors who made the connection that may have saved Michael Kaltenmark’s life. A medication prescribed by another provider for Kaltenmark’s Crohn’s disease was having a negative impact on his kidneys.

It was in the late 1990s when Kaltenmark became symptomatic with Crohn’s disease, an inflammation of the digestive tract.

“I was on prescription meds that weren’t monitored properly by a different health system but fortunately I was referred to IU Health,” said Kaltenmark, 39. Nephrologist Michael A. Kraus and gastroenterologist Debra Helper intervened.

“I owe them so much. They got me turned around. I’d hate to think where I’d be without them,” said Kaltenmark.

A 2002 graduate of Butler University, Kaltenmark received his undergraduate degree in journalism and public relations. In 2016 he received a Master Degree in Effective Teaching and Leadership through the university’s College of Education. He began working at Butler in 2002. In his role as Director of External Relations, Kaltenmark is the handler for the Butler Bulldog mascot.

These days, Kaltenmark jokes that he needs a handler.

Last month after reaching out on social media – sharing his need for a kidney, Kaltenmark was overwhelmed by the response. His original tweet was reposted 839 times and received 731 likes. His Facebook post was shared 528 times and his Instagram post received 348 likes.

“For the bulldog that’s nothing, but for me it’s pretty neat,” said Kaltenmark.

In December 2018 IU Health nephrologist Dr. Nupar Gupta told Kaltenmark his kidney function had declined. Diagnosed with Stage 4 kidney failure, he began the process of preparing for a kidney transplant.

“Kidney transplant is considered the best treatment option for people facing kidney failure because it can generally increase the quality and length of a patient’s life. Ideally, the transplant would occur before the patient needs dialysis therapy,” said Dr. Gupta. “Success depends on health prior to transplant, care after transplant, and closely following doctors’ recommendations after the transplant.” Kaltenmark is also under the care of gastroenterologist Dr. Monika Fischer, and primary care physician Dr. Andy R. Dillingham, a Butler fraternity brother. His transplant coordinator is Shannon Gruber.

“Michael is very engaged in his care and working towards his kidney transplant.

Research has shown that patients who get a kidney from a living donor have kidney function longer than patients who get a kidney from a deceased donor,” said Dr. Gupta.

Dr. Gupta added that kidney damage is rare in patients taking sulpha medications for Crohn’s disease. Renal impairment may occur in up to one in 100 patients treated with 5-ASA, but clinically significant damage would occur in only one in 500 patients, she added. In most cases, renal failure is caused by an acute or chronic allergic reaction in the kidneys, which is unrelated to the 5-ASA formulation and dose.

“I feel like any care I am receiving now is a derivative of where I started. They all work together. It’s all integrated into a holistic approach to my medical needs. I feel like the right hand knows what the left hand is doing because they communicate so well,” said Kaltenmark. “I’ve found that once you are listed as a transplant patient, as soon as you show up and they recognize that, they are super efficient at getting you through.”

Since his initial posts, Kaltenmark has received hundreds of phone calls, texts, and private messages.

“I have people stopping me when I’m waiting on my son to get off the school bus,” said Kaltenmark, who is married to Tiffany and the father of Everett, 8 and Miles, 4. “The outpouring of support has been amazing. If I didn’t feel loved after that week, I certainly do now. I’ve been amazed at how selfless people have been. It speaks to how great people are and how kind they are and it also speaks to the notion that when we are in times of need we should speak up, get out of our comfort zone.”

Kaltenmark grew up in Wabash, IN. the third son of Jim and Shari Kaltenmark. To date, his brothers Randy and Doug are among the perspective kidney donors.

The circle of support has been wide – including friends from his hometown; his church – Traders Point Christian; Butler; and the Indianapolis community.

The US Government on Organ Donation and Transplantation reports more than 113,000 people were on the transplant waiting list as of January 2019. Of that number 83.4 percent were waiting for a kidney transplant.

“My part in this is done. Now we wait for all the testing to find a match,” said Kaltenmark. “I didn’t realize my posts would result in so many responses and that’s great. I think we’ll find a match and a really cool result is we’re bringing attention to the need for living donation. It would be great if someone came forward for me who isn’t a match but wants to be an altruistic kidney donor.”

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

Drugs, alcohol, starvation, self-mutilation – he did it all and lived to tell about it

Spencer Medcalf uses his life experience to help others as IU Health expands virtual care for addiction and mental health treatment.

Spencer Medcalf knows what it feels like to land in an emergency department desperate for help. Not so much for physical injury but for mental health/addiction treatment.

“I have been one of those people who have presented with those co-occurring psychiatric needs in hospitals and essentially handed a piece of paper and released with no real help,” he said. “You’re just as lost, if not more lost, as when you showed up.”

That’s why he is excited about IU Health’s decision to expand virtual behavioral health services to its hospitals and other centers around the state. The service, announced last month, provides round-the-clock virtual access to psychiatric evaluations and addiction assessments for emergency department patients.

Medcalf is now part of the solution to the growing need for emergency and acute psychiatric care. He works as a peer recovery coach in the behavioral health virtual hub, located at 714 N. Senate Ave., Indianapolis.

ROAD TO RECOVERY

The 27-year-old marked two years of sobriety April 25 after years of abusing alcohol, pain pills and heroin.

He started outpatient counseling when he was 13 and went through in-patient treatment seven times. On top of recovering from addiction, he also is a recovering anorexic and self-mutilator.

“I haven’t felt the need to self-harm or starve myself in two years. I’m very proud of that and I think it’s important to be transparent because it’s not always just addiction. There’s a lot of co-morbidities, co-occurring disorders. I’m not ashamed of those things; I’m open about it.”

It took a village to help Medcalf get sober, he said. And he’s so grateful for that support that his mission in life is to help others on that same path.

“For a long time, I blamed a higher power for all the trauma I experienced, and now it makes sense,” he said. “I had to go through those things to be able to help people today.”

He and six other coaches work in the virtual hub, ready to be connected to smaller IU Health emergency departments when patients are deemed in need of a psychiatric evaluation. Nurses in the EDs of outlying hospitals will connect patients with a care team or coach in Indianapolis via a live video feed on a cart that can be rolled into a room as needed.

Use of virtual services will allow patients in need to stay where they are and significantly cut the wait time for an assessment. Traditionally, patients at smaller or rural hospitals who need a psychiatric assessment are transferred by ambulance to a bigger hospital, causing long wait times for treatment, additional costs and transportation issues once they are released.

The initial virtual ED encounter might take anywhere from five minutes to 30 minutes, Medcalf said. But the care doesn’t end there. A series of follow-ups are scheduled, depending on the initial assessment.

The behavioral health hub also offers 24/7 access to social workers and therapists, so even if patients are not admitted to a hospital, they have access to a safety plan, acute treatment and follow-up care.

BETTER ACCESS FOR RURAL COMMUNITIES

The virtual care will give more Hoosiers, particularly those in rural areas, better access to behavioral health care and will alleviate some of the strain put on emergency departments, said Dr. Anne Gilbert, medical director of Behavioral Health Virtual Services.

“For many who don’t have access to a primary care physician or don’t know where to go, the emergency room becomes their entry point for treatment,” she said.

The virtual care component has been a boon to the patients and to emergency room physicians and nurses, she said.

The behavioral health initiative is part of IU Health’s strategic plan to improve the health of Hoosiers by focusing on mental health.

“Our clinicians in the emergency department have identified behavioral health as a critical need and are excited about this innovative approach to psychiatric care,” said Dr. Cherri Hobgood, chair of the Department of Emergency Medicine at IU School of Medicine. “We are confident that it will help us better serve our patients during a time of crisis.”

Medcalf and other peer recovery coaches began working virtually with patients in Frankfurt in Clinton County last fall. At first he was apprehensive about taking on the role, wondering if people would engage with a computer screen.

Turns out, it’s engaging enough that people will talk, and yet it’s less intimidating for those who might be reluctant to tell their story to a person in the same room with them.

Dr. Gilbert is pleased with initial feedback on the expansion, which includes Arnett, Frankfurt, Jay, Blackford, Paoli, Tipton and Bedford hospitals. Coming soon are Saxony, White, North and West hospitals.

“It’s been even more impactful than I expected at this early stage,” she said. “What’s been valuable too is often there is a dual diagnosis – people with addiction having suicidal thoughts.”

After a peer recovery coach finishes his or her assessment, it might be determined that the patient needs to talk with a psychiatrist. “We have master’s therapists in the hub – if we decide they can go home, we’ll work with them on some therapy for a safety plan and follow-up plan. We can do that all in one consultation on one cart,” Dr. Gilbert said.

Additionally, social workers are getting to understand different barriers in placements in the state, she said. “So it’s been enlightening for the system to know where we have reasonable psychiatric support and where we may need to partner or need to add services.”

Dr. Gilbert was able to get real-time reaction from one patient she was assessing in northern Indiana. She asked how he liked the virtual care platform, and he told her at first he thought it was going to be “weird,” but then acknowledged that he didn’t think he would have been able to talk so freely if she were sitting in the room with him.

Medcalf, who nearly died after overdosing more than once, tells anyone who will listen that recovery is possible for someone suffering a substance use disorder.

“I’m not special. I just finally listened and took suggestions,” he said. “My story might be traumatic, but you can achieve recovery. You just have to reach out and accept help. Any of our coaches or social workers would be happy to help.”

– By Maureen Gilmer, IU Health senior journalist
Email: mgilmer1@iuhealth.org
Photos by Mike Dickbernd, IU Health visual journalist
Email: mdickbernd@iuhealth.org

Patient from central Africa – Pain in right knee was sarcoma

He fled from a country haunted by racial tension. Even when there was little hope of furthering his education, he persevered. He moved to the United States to start a new life and now he is fighting to recover from a rare form of cancer.

There are many layers to Mukhen Tebong’s life. Just three years shy of 40, he could write a book that would make him seem twice his age.

As Tebong recovers in a hospital bed at IU Health Simon Cancer Center nurses Arra Schroeder and Aletta Royer hear him talk about a life far away from Indiana. The details are clear to social worker Janet Hoyer who has helped him navigate the path to recovery.

Tebong is no stranger to challenge. But the cancer in his leg is a different challenge. Now, he is unable to work. That reality may be temporary but every paycheck represents a mountain he has climbed. He is the primary breadwinner for a family that lives in Central Africa – a family that includes four brothers, two sisters and their children. He also has two young daughters living in Cyprus.

A native of Cameroon, Tebong learned early on the importance of education. His father was a teacher and had high hopes for his son who showed great promise and ambition in furthering his education.

“Life is different where I come from. There is extreme racial tension and marginalization,” said Tebong. “It doesn’t matter how smart you are, you still can’t get into the best schools.” After graduation from high school he completed the college entrance exam and had his sights set on a career in computer engineering. When he didn’t get into the university, he began taking computer classes and landed a job at an Internet café.

Racial tension and social exclusion in his country posed ongoing threats. Tebong feared for his life, so he left Cameroon in 2006, moving nearly 4,000 miles away to Cyprus. Four years later he was married and half way to a degree in nursing when pain in his right knee became unbearable. Doctors in Cyprus discovered the pain was caused from a giant cell tumor. Later he was diagnosed with Sarcoma. Surgery was performed to remove the tumor. Tebong completed his nursing degree but was unable to bear enough weight on his leg to complete his clinical work. A year later he had a second surgery to again remove the cancer.

Sarcoma is a rare form of cancer that attacks the bones and connective tissue. It’s not known what causes the cancer but some research suggests it can result from exposure to radiation or cancer-causing chemicals. There are fewer than 200,000 cases reported in the U.S. each year.

After two surgeries Tebong continued working and providing financial support to his family back home. Life was a continual adjustment. He lost both parents and due to the unrest in his homeland, he was unable to return for their funerals. He hasn’t been back to Cameroon in 13 years.

In April of 2016, he moved to Washington, DC – bringing his wife to live near a cousin and hoping for a fresh start in a safer environment. But the challenges continued. He couldn’t obtain a work permit for 150 days. Heartbroken over the separation from their young child, his wife left and returned to Cyprus.

“I asked where I should live to go on with my life. I wanted some place calm, no crime, no worries,” said Tebong. “Indiana” was the answer he received. So he moved to the Midwest and landed a factory job – again working to send money home.

“In August of 2017 the pain came back in my leg. It continued to get worse,” said Tebong. Dr. L. Wurtz, an orthopedic surgeon reviewed his scans. A biopsy showed the cancer had returned. It was October of 2018.

“They said I needed surgery again but I needed to work,” said Tebong. “Every time I got paid I was sending money back home. One sister has four kids; another has two kids. Her husband was shot dead at the age of 25. My brother’s business was burned. No one else could support them. It was up to me.”

But by March, it became impossible for Tebong to ignore the pain. He was admitted to IU Health for a third surgery to remove the cancer. Under the care of oncologist Dr. Daniel A. Rushing, he will continue with rounds of chemotherapy.

“I am where I need to be. I have been heartbroken. I have been afraid for my life and the lives of my family members. I know what it means to suffer,” said Tebong. “I do not know what the future holds but I know that God will put me where he wants me. Right now my life is focused on health, family and then money.”

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

Double Lung Transplant Patient has Passion for Indy 500

Since he was a preschooler, Brian Crowe has loved everything about the Indianapolis 500. It was a passion sparked by his late grandfather.

There’s a white racing helmet inside the IU Health Methodist Hospital room of Brian Crowe. It’s covered in 139 (not 140) signatures of IndyCar drivers. There’s a story behind that helmet and there’s also a story behind a pair of Puma tennis shoes tucked under a chair.

“I only wear Puma because that’s what Dan Wheldon wore,” said Crowe, referring to the two-time Indianapolis 500 winner. When Crowe’s granddaughter was born in Florida he left the house wearing one Puma shoe without its mate. He said he was in a rush and flustered that the baby was coming on race weekend and he was going to miss the race. As it turned out his granddaughter arrived on his birthday, May 29th.

It’s safe to say that May is a big month for Crowe. His wife Debbie, his high school sweetheart, learned early on in their marriage that “race month” is serious business for Crowe.

So what about that racing helmet? It’s a symbol of what he calls a “passion” for all things IndyCar. It’s also part of a showcase of Crowe’s hobby – collecting racing memorabilia – something that connects him to memories of the month of May spent at the track with his grandfather.

This May is different for Crowe as he recovers from a life-saving double lung transplant.

“I was a Riley kid. I spent my summer vacations and spring breaks getting breathing treatments and bronchoscopies, brochograms, and IV meds,” said Crowe who was born with bronchiectasis, a chronic condition that causes the inflammation and infection of the walls of the bronchi. His right lung collapsed when he was a teen and as he got older doctors contained the disease with antibiotics. A year ago, Crowe, who turns 54 this month, was advised to get to the hospital.

“I ignored it because I was at the track. I wasn’t going to give up the month of May,” said Crowe, who is in the care of IU Health pulmonologist Dr. Robert Daly. “I saw him on my birthday and he said ‘if you don’t get on the transplant list you won’t see your 60s.’” That started his journey toward an eight-hour double lung transplant performed on Feb. 2 by IU Health surgeon Dr. Jose Garcia.

At his worst, Crowe couldn’t make it through a game of Ping-Pong. His lungs were functioning at about 35 percent capacity. Two days after his transplant Crowe was back in surgery for his gall bladder.

“He’s come a long way. Brian decided to be different all around. He had a reaction to a rejection drug. His kidneys were disturbed. He lost his gallbladder, had blood clots and double strokes but now he’s doing excellent. It just took us awhile to get here,” said Debbie Crowe. And as the months to recovery ticked by, May was around the corner.

“I’m behind the eight ball and I need to catch up,” said Crowe. This year, he’ll hang a checkered flag and be glued to the TV. “There may even be some tissues,” he said.

Little has gotten in the way of Crowe’s love for all things IndyCar. He laughs as he talks about “minor glitches” of year’s past. There was the time his wife hit her head on the car window, got a concussion and they still went to the race. And then there were all the times he repaired his busted cooler with Duct Tape – and he still went to the race.

He has more than 20,000 pictures that capture memories of past races. One shows a five-year-old Crowe sitting on the grass with his mom enjoying an infield picnic. His late grandfather Earl Davidson worked for Enco, a branch of Exxon Mobile that provided fuel for the race. They called Davidson “Enco Red” for his red hair.

“He knew a lot of the older drivers and was good friends with A.J. Foyt. I can remember him working on A.J.’s car. The 1967 was my favorite. They were towing it to Texas so grandpa had it in his garage and we’d go play in it,” said Crowe of the cherry red #14 car that won the 51st running of the Indianapolis 500.

At around the age of 16, Crowe was working at a greenhouse and made his way through Valvoline’s private entrance by bringing in a flat of tomato plants for the gatekeeper. “You were supposed to be 21 to get in but I brought a flat of tomatoes for his garden and got a pass for the month of May,” said Crowe, who estimates he’s been to every race except for the four years he and his wife moved to Florida for his job.

“It was a love affair to be there in that old garage with the drivers. I could go and find the same spot and just watch people go by. I’ve been doing it for so long I could take other people out and they may not realize who someone is,” said Crowe.

Over the years his collection of memorabilia has grown. There’s the helmet – with the signatures of such racing greats as Johnny Rutherford, Bobby Unser, Mario Andretti, and Rick Mears. He has no clue who was the first to sign it or who was the last but when he had a surprise hospital visit from Pippa Mann her signature was already on the helmet. She gave him a Donate Life model car and a bag of racing goodies to add to his collection that also includes miscellaneous car parts and a 1960s pit board.

“I can’t really say what my favorite memory is,” said Crowe. “There’s nothing like walking through that gate for the first time and I always remember my grandpa’s advice, ‘Don’t ask for an autograph, and don’t bother the drivers when they’re working.’”

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

Mother’s love – “We almost lost her but we weren’t giving up”

She’s battled Acute Myeloid Leukemia twice and Rollanna Sauberlich said she wouldn’t be alive now if it wasn’t for the love and support of her mom and her family.

Sitting in an infusion pod at IU Health Simon Cancer Center, Helen Ringer fights tears as she talks about the rocky road her daughter traveled. In February of 2016 – just a year after her son was born – Rollanna Sauberlich was diagnosed with Acute Myeloid Leukemia (AML).

“I had extreme pain in my hip to the point I couldn’t walk. I thought I had a pinched nerve so I was going to a chiropractor. By the time I was diagnosed with AML I was 97 percent leukemia cells. Another two weeks and I wouldn’t be here,” said Sauberlich, a resident of Culver, IN.

To hear her talk, to see the pictures of her when she was at her lowest point, and then to see her now is something her mom says is just short of a miracle. A former high school homecoming queen candidate, Sauberlich’s petite frame dropped 67 pounds at one point. She lost all of her blonde hair; her hands, feet and nose turned black; she lost some of her nails; and her right arm had a large wound.

“At one point she had multiple doctors all working together to keep their ducks in a row and make sure the individually prescribed medications weren’t interfering with each other,” said Ringer.

Her initial trip to ER back home resulted in two x-rays. The first one revealed white spots on her spine that doctors initially thought was Histoplasmosis – more commonly known as “bird flu.” A follow up scan resulted in the diagnosis of AML. She began induction and consolidation chemotherapy at a Fort Wayne hospital and was in remission until Thanksgiving 2016. A relapse sent her back to the hospital for more chemotherapy.

“I reached remission and we scheduled a bone marrow transplant at IU but I got very sick with sepsis so it was postponed,” said Sauberlich, 46. She had her transplant on March 8, 2017 and things began to look up.

“The transplant went well but on March 21, everything changed. It is a day I will never forget. It was a nightmare. She had multiple side effects,” said Ringer. “All of her organs shut down. She was on dialysis. Her heart was operating at 20 percent. We almost lost her but we weren’t giving up. They called all the family in,” said Ringer. Sauberlich has six siblings. She also has a daughter, 27, and two grandsons.

“Rollonna’s family stayed by her side the entire time. Family rotated according to work schedules. When Rollonna got very sick, they gathered together for love and support, filling the bone marrow transplant family area,” said IU Health medical social worker Kim Baker. “Rollonna gets the grand prize. Although she missed her two-year-old son beyond measure, she championed through her difficult journey in order to return to him.”

In addition to contracting the life-threatening sepsis, Sauberlich developed a Protein C deficiency – a condition that increases the risk for abnormal blood clotting. With lack of blood flow, her nose, fingers and toes turned black.

“There was talk of amputating but Dr. Mohammad Abu Zaid said to wait it out. I’m forever grateful to him. Nature took its course and the circulation came back,” said Sauberlich. “With all that happened I spent nearly two out of three years in the hospital.”

She was released from the hospital in May of 2017 and moved with her mom into an apartment near the hospital. For nine months, she couldn’t shower and she could barely walk. Her mom drove her to the hospital and helped care for her wounds. When they moved home, Ringer moved in with her daughter for the remainder of the year. And when Sauberlich returned to IU Health Simon Cancer Center recently for a follow up appointment and preventative infusion Ringer again accompanied her.

“I learned from mom to be strong and keep fighting. My sister left her family and job for three months. I wouldn’t be here if it weren’t for my loving and supportive family and the grace of God,” said Sauberlich, the second to the youngest including four older brothers.

“It’s been a group effort. Her sister took family leave and all of her siblings supported her during head shaving parties. They’ve always been close,” said Ringer. “They treated her like a baby doll when she was growing up and they were very nurturing when she was at her worst. It’s wonderful having her back. It’s been a long road and I didn’t know if she’d make it but never gave up hope.”

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

Mom, twins – party of three happily serves patients

Heather Wallace is a nurse supervisor in oncology at IU Health Ball Memorial Hospital. Her twin daughters – Shantyle and Savana Wallace also work at the hospital.

They finish each other’s sentences; they laugh at family stories; and they all three work in the same hospital. Heather Wallace tells about visiting New York with her twin daughters Shantyle and Savana Wallace and how they managed to clear a subway car because they were “laughing so hard and carrying on.”

It’s a party of three for this mother and her identical twins.

“Shantyle is the rule follower. Savana is the rebel,” said Wallace, who is married to Otha Wallace. Shantyle is a vegetarian and Savana loves meat – especially bacon. But, in many other ways the twins are similar. In fact, when they were born doctors determined they were “mirror twins” or monozygotic (MZ) twins – terms used to describe their physical features. When they are facing each other, some of their characteristics are opposite. Mirror twins start as a single fertilized egg but at some time during the first two weeks after conception the embryo splits into two identical parts.

“Shantyle is missing teeth; Savana has them. Savana is left-handed; Shantyle is right-handed. Savana is strong willed; Shantyle is measured,” said Wallace, who delivered the twins at IU Health Ball Memorial Hospital on November 22, 1998. Savana weighed five pounds 15 ounces, and Shantyle weighed five pounds 12 ounces. The babies were born two weeks early and Savana entered the world 15 minutes before her twin sister. The twins have two younger brothers Isaiah Wallace, 11 and Jackson Wallace, 13. Savana is the mother to two-year-old Sophia, and 10-month-old Salvador.

When the twins were students at Muncie Burris they often met their mom at nearby IU Health Ball Memorial Hospital for lunch and completed homework in the hospital cafeteria after school.

They both participated in cheerleading and volleyball and managed the basketball team together. Shantyle was into soccer and track and was a member of National Honor Society. Savana was class president. They volunteered for Relay for Life and served at a mobile soup kitchen when they were in New York.

Heather Wallace started working at IU Health Ball Memorial eight years ago in oncology.

“I really like the connection you make with people – the patients, staff, and coworkers,” said Wallace. “When I first started at the hospital I remember walking down the hall with someone who knew everyone she passed. I was wishing I knew as many people as my co-worker and now I do. It feels good.”

The Hospital is like a home away from home for the twins.

Shantyle, who is working toward her teaching degree, began working at the hospital’s Subway location over a year ago. She now works in communications and guest relations.

“I got to know so many people when I was working at Subway. I knew their orders before they said them,” said Shantyle. In guest relations she answers phones and pages doctors. Savana, a certified nurse practitioner, recently started working third shift as a patient care assistant in oncology. Most days she is passing her mom and sister as she is leaving work and they are starting their day.

“There’s hardly a day that goes by that I don’t see both of them either at the hospital or at home,” said Wallace. Until recently both girls lived with Wallace and her parents. Shantyle recently moved with a friend but they all still get together for dinners and shopping.

“I started at the hospital so I could be close to mom,” said Shantyle. “Now that I am a mom too, I understand so much more and have so much respect for her. She’s taught me a lot about life and to not rush things,” said Savana.

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