Married to Medicine

At work, they’re known as Dr. Noor Bakroun and Dr. Mustafa Hussain, two highly-skilled physicians at the IU School of Medicine Arnett Family Medicine Residency program, but at home, the stethoscopes come off and they are simply husband and wife. We sat down to talk with these two about what it’s like to be married to medicine.

Q: Why did you choose to pursue Family Medicine?
A: Dr. Noor Bakroun: I chose family medicine because of the diversity this field has, we treat so many different conditions and it allows us to be well-rounded and think outside the box. As a family physician, you treat the patient who has a disease, not just the disease. Also, being the primary person patients come to with their concerns and questions and being the primary person to guide treatment and management is a great privilege. Family medicine also focuses on many different chronic conditions prevalent in our community such as hypertension, diabetes, high cholesterol, obesity and being able to manage these is important to give back to our community.
Dr. Mustafa Hussain: I had job shadowed many family physicians prior to entering medical school, and enjoyed the time spent with those doctors. I witnessed the humbleness and amount of care the family medicine doctors dedicate to patients every day as part of their career. I also come from a background of family physicians. Being a family medicine doctor is more than just being a doctor. To some patients, the doctor is the psychiatrist, the friend, the social worker. They have the honor to care for patients from a young age and watch them grow into a healthy lifestyle and guide those with difficulties to make correct decisions. Family medicine doctors play a big role in their community as well, since they have an idea of the needs and issues their community is dealing with.

Q: How/Where/When did you meet?
A: Dr. Noor Bakroun: We met on the Caribbean island, Saba, where we both did medical school at Saba University School of Medicine. Mustafa was one semester ahead of me, he would tutor many of the students’ courses such as histology, physiology and neuroscience and I was one of those students. We were also both part of a student committee. I was his treasurer and he was the president. Mustafa walked me home two weeks before writing his final exam on the island and he asked me if I would consider getting to know him more. I had to ask my father. He ended up traveling to Doha, Qatar, to ask my father for his permission. My mother and father loved him and gave me their blessing to get to know him more and here we are.
Dr. Mustafa Hussain: The interesting part is that my brother was also in her class at university… He was not too happy with me in the beginning, haha.

Q: How long have you been together/married?
A. Both: We have been together since 2015 and got married on March 31, 2018.

Q: Couple residency matching process… tell me a little bit more about that. How did you decide where to apply, what was that process?

A: Dr. Noor Bakroun: To be honest there was a lot of intense decision making during this process, it was a pretty stressful moment in our lives. I am a US/Canadian citizen and Mustafa is a Canadian citizen, so choosing programs that would fit both of our needs was where the struggle began. We both did not want to compromise each other’s chances in getting in our location of choice. We both knew we wanted family medicine, which made things easier and we had similar interests in the type of location we wanted such as a University program, unopposed, family-oriented and a safe area that was also close to our home, Canada. Fortunately, we had several interviews in the same location, which made it a little easier during the ranking process. We then ranked programs as a couple and it worked out really well for us.

Graduation day for Little Oliviyah

At two months, little Oliviyah Clanton was diagnosed with Torticollis, a condition that causes the neck muscles to contract. She has received regular physical therapy but recently graduated from the sessions.

She’s only two and half years old, but already Oliviyah Clanton has graduated. She recently completed her final session of physical therapy with IU Health’s Eagle Highlands therapist Laurie Niederhauser.

As Oliviyah negotiated stairs Niederhauser talked about how far the little girl has come in her recovery.

“She has been seen for physical therapy since she was two months old. She was originally referred for torticollis and plagiocephaly. These conditions were the result of how she grew in utero and resulted in asymmetrical movements, atypical movement patterns, visual challenges, tonal changes, and sensory issues. Without intervention, she was at risk for severe muscle imbalances and continued motor delays,” said Niederhauser who has worked with IU Health since 2012.

Torticollis is a rare condition that causes the head to twist to one side. There are fewer than 200,000 cases reported in the United States each year. It can result from the baby’s positioning in the womb or from a difficult childbirth. Plagiocephaly develops when an infant’s soft skull becomes flattened in one area. Sometimes a fitted helmet is used to help correct the shape.

Oliviyah, the daughter of Shayda Killebrew and Lydon Clanton took part in “Awaiting First Steps,” a Riley Hospital for Children at IU Health program for children.

“We are able to get children started in services quickly, so we can capitalize on precious days of early brain development and retraining,” said Niederhauser. “We see it as a huge service to help these kiddos jump start early leading to shorter duration of services and more timely outcomes.”

Through regular physical therapy Oliviyah is able to safely climb playground equipment, navigate stairs, pedal and steer a tricycle and traverse a balance beam. She can catch, throw, and kick a ball and participate in age-appropriate activities alongside her peers. Where once her head tilt limited her to tasks only performed at her sides, she is now manages two-handed tasks in the center of her body. She used to be cautious and timid but is now able to play confidently, said Niederhauser.

“She loves to sing, dance, play with bubbles and paint,” said her mom. “Her favorite food is French fries and she loves all fruits. She also loves going to the park to run, swing and climb.”

— By T.J. Banes, Journalist, IU Health.
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IU Health Urgent Care centers are on a mission to serve veterans

Indianapolis-area centers and one in Bloomington now offer expanded care to veterans.

IU Health Urgent Care is answering the call to make affordable and accessible care available to Indiana’s 455,000 veterans.

Veterans now have greater access to medical care outside of VA hospitals through a program that launched earlier this month under the federal Mission Act, which was signed into law last year by President Trump.

“We’re excited to give our Hoosier veterans greater choice and access to timely, high-quality care,” said Melissa Cash, regional administrator for IU Health Urgent Care. “We wanted to be sure we were part of this program to provide care for the veterans who have served us.”

As part of the U.S. Department of Veterans Affairs’ contracted network of community providers, IU Health’s four urgent care centers in the Indianapolis area (Brownsburg, Greenwood, Noblesville and Broad Ripple) and the Bloomington location now can offer care to veterans without prior authorization.

Cash, who has veterans in her own family, believes access to IU Health Urgent Care centers will make a huge difference to Indiana veterans and those who visit the state. No appointments are necessary. Vets need only walk in and state that they have served. Front desk personnel at each center will verify eligibility. The only prerequisite is that vets must have been seen by a provider in a VA facility in the previous two years. That automatically enrolls them in the program.

Accessing highly skilled medical care can be a challenge for veterans, Cash said. Joining the mission to serve them well only made sense.

Delivering highly skilled, personalized care to veterans aligns with IU Health’s mission, said Joe Kukolla, brand manager for System Clinical Services’ retail health division.

As part of Indiana’s largest healthcare network, IU Health’s Urgent Care locations are equipped to treat a wide array of illnesses and injuries. Urgent Care centers have onsite lab and X-ray services, which allow physicians to diagnose and develop treatment plans.

IU Health is committed to the Urgent Care model, a low-cost alternative to other higher cost settings of care, Kukolla said. New IU Health Urgent Care centers will open later this year in Downtown Indianapolis at the corner of Senate Avenue and West Michigan Street, in Avon and in Fort Wayne.

– By Maureen Gilmer, IU Health senior journalist

She’s dedicated five decades to IU Health

When Brenda Norman retires this week, she will have spent the majority of her life working at IU Health.

She’s known for her macaroni and cheese that she brings to work pitch-ins and her ability to remember every patient’s name.

Brenda Norman has dedicated 50 years to working for IU Health. She started out working in dietary when she was a sophomore at Crispus Attucks High School.

“At that age, I had no idea what I wanted to do but I was drawn to the hospital and when I got there I stayed,” said Norman, the first of six children born to the late Ezell Sullivan and Ida Sullivan. From the beginning when she delivered trays to patients at Methodist Hospital she loved the interaction.

After graduation she completed training at Methodist Hospital to become a phlebotomist. “I liked doing the different blood draws and mingling with patients. We were like family there,” said Norman.

Danielle “Dani” Abel, also a phlebotomist has worked with Norman for 16 years.

“She always lightens the day with her jokes,” said Abel. “We watch the “Young and the Restless” together on our lunch break and sometime we go for walks. I went to her bridal shower when she got married. We’ve just become friends over the years. She knows all the doctors and nurses. In fact, there isn’t anyone she doesn’t know,” said Abel.

Seven years ago Norman married Daymon Norman. She has one son Wayne Chandler, Jr., two grandchildren and one granddaughter. One of her grandchildren, Jalen Chandler works at a rehab technician at Methodist Hospital and her youngest sibling Tracey Sullivan also works at IU Health in registration at Eagle Highlands.

In 1988 Norman began working at the Prostate Center at IU Health Eagle Highlands and then outpatient registration (system patient specialist) at the Eagle Highlands location.

“She’s always been motherly. The role she played at home is the role she plays at work,” said Sullivan. “We’re 12 years apart and she’s always been the one in charge. With six kids, mom needed the help.”

Sullivan remembers when their father was a heart patient at Methodist Hospital preparing for a transplant in 1973. “Brenda would go and visit dad during her breaks at the hospital and report back to us how he was doing,” said Sullivan.

Gloria Harmon has worked for IU Health for 39 years in registration.

“If Brenda’s not here, the patients ask for her,” said Harmon. “She’s funny. She’s pleasant but she’s commanding. We sometimes call her ‘general’ because she knows what she’s doing and all the areas. She treats all the patients like family,” said Harmon.

The biggest changes over the years have been with record keeping and paperwork, said Norman. “Everything has gotten more up-to-date. It’s been a great place to work. It’s paid my bills, kept food on the table and sent my son to private school.”

Carvie Washington has worked with Norman for four years. “She’s contributed a lot to IU Health. You can always depend on Brenda,” said Washington.

There will be a retirement celebration for Norma from 11 a.m. to 1 p.m. Thursday, June 27 at IU Health Eagle Highlands.

“IU Health thanks Brenda for her 50 years of many valuable contributions,” said her supervisor Laura Bowman. “Her loyalty and dedicated service played an integral role in making Eagle Highlands a special place for both patients and peers.”

What will she do after retirement?

“I like to roller skate, watch romantic movies, and go out to eat,” said Norman. “But first I’m going to be me – I’m going to put everything on hold and just surprise myself with what comes along.”

— By T.J. Banes, Journalist, IU Health.
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Patient gets wish – wedding in her hospital room

When she was told she was getting near the end of her life, Anna Gonzales asked for one last wish – to marry her fiancé Justin Middleton. Today, IU Health staff members in Palliative Care and Medical ICU made the wish come true.

Just one day before her nuptials, Anna Gonzales’ voice was weak. But her determination was strong. She wanted to get out of her hospital bed and sit at the side of her fiancé Justin Middleton, as they exchanged wedding vows.

It was a major task for the 30-year-old woman who struggles to breathe.

Diagnosed in infancy with cystic fibrosis, Gonzales has been hospitalized numerous times throughout her life. The most recent stay brought her to IU Health on June 2 where she is in the care of Dr. Cynthia Brown. And when she said she wanted to marry the man she fell in love with over Thanksgiving dinner, a sea of caregivers swarmed around her to make the wish a reality.

In a hospital room on the Medical Intensive Care Unit, Gonzales’ nurses, respiratory therapists, social workers and physical therapists bustled with precision – hanging crepe paper flowers, setting out battery-operated candles, and arranging bouquets of artificial flowers. They dressed Gonzales in a champagne gown with brocade lace, and added a gold tiara with a matching veil to frame her face. The attire was lovingly stitched together by nurse Ruth Miller, a case manager.

“This is not about me; it’s about helping the people we love,” said Miller. Another nurse gave Gonzales a manicure – painting her nails her favorite color – purple. “Anna has wanted to get married for some time and on this admission we decided it was time to make it happen,” said nurse Meredith Kille, Gonzales’ case manager.

“This is the second time we’ve had a wedding of a patient like this,” said Dr. Brown. “It feels so special whenever someone is so ill and you can give them something so important and focus on the whole person. There are times you can’t make the disease better but you can ask, ‘what is important to you right now?”

As Gonzales’ brother Santiago Gonzales stood by her side, Middleton walked into the hospital room beaming at his bride. Behind him a hallway was packed full of other caregivers.

“Welcome to the wedding celebration of Anna and Justin,” said chaplain Staci Striegel-Stikeleather. “Today we celebrate the unconditional love they have for each other. It is an honor to be standing up here today as these two people become united in their commitment to each other. This love is far more reaching than any circumstance, illness, or space in time. This may be an unconventional place for a wedding but it is often in the chaos of life where beauty emerges and blessings and joys catch us by a wonderful surprise,” said Striegel-Stickeleather.

As the couple recited their vows and exchanged rings, Gonzales whispered that she didn’t think her fiancé had time to get her a ring.

Her nieces, Amillia and Sophia Gonzales, presented a small bag. When Middleton reached into the bag and pulled out a silver ring with a purple gemstone, Gonzales giggled excitedly. Others in the room wiped away tears.

“I work in Elkhart and when they told me I needed to get here and that she was at the end of life, I came with very little,” said Middleton. “I’ve never looked at a person’s health. I’ve always looked at who they are. We all have our challenges, our downsides. I wanted to make this happen for Anna. Once the date was set, I snuck into the hospital gift shop and bought the ring.”

Music therapist Adam Perry played soft piano music as Striegel-Stickeleather introduced “Mr. and Mrs. Middleton.”

Social workers Sarah Hale and Libby King who helped coordinate wedding colors, refreshments and flowers handed the couple two goblets filled with apple juice. Caregivers streamed into the room one by one to offer congratulations and enjoy a slice of wedding cake.

The new Mrs. Middleton beamed as she announced: “Today I got to marry my best friend.”

— By T.J. Banes, Journalist, IU Health.
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HIV services expand across the state

IU Health Positive Link offers a community-based program for HIV patients in 49 counties across the state.

It’s been 20 years since Thomas Dyer learned he was infected with HIV.

A graduate of Indiana University, he had moved to LA and was advised at the time to go on medication. He was even going to take part in a study of a vaccine to prevent HIV. But he put off treatments.

“There were a lot of people of my orientation, a lot of promiscuity. I did not have any symptoms and I was in good health. I delayed medications out of fear and ignorance,” said Dyer, who is back in Bloomington. In April of 2013 he began taking part in the services of Positive Link, a program that started in 1991 and has expanded over the years to offer services in 49 counties. The IU Health program offers a range of services specific to those impacted by HIV. Those services include risk reduction planning, pre-exposure prophylaxis (PrEP) navigation, outreach and community groups, and HIV testing.

The Centers for Disease Control and Prevention recommends people between the ages of 13 and 64 be tested once for HIV as part of routine healthcare. On June 27, LifeCare, a program that has served hundreds of Indiana clients infected with human immunodeficiency virus (HIV), will offer free HIV testing from 8:30 a.m. to 4 p.m. LifeCare is located at 1633 N. Capitol Ave., Suite 300, Indianapolis. Positive Link will also offer free testing at sites in Terre Haute, Bloomington and Paoli.

As part of National HIV Testing Day various healthcare providers and outreach programs come together to raise awareness of early prevention and early detection.

Positive Link collaborates with LifeCare to provide the best patient care to the growing clientele throughout the state. The care goes beyond medical needs.

Dyer utilized the Bloomington program to secure housing and transportation to and from his doctor visits and the pharmacy.

“The toughest part of me dealing with HIV was from 2001-2012 when there were limited services. I was living paycheck to paycheck and was dealing with stress and alcoholism,” said Dyer.

He relies on the food pantry for meal planning and also takes part in the “Positive Eats” workshop that provides information about diet and nutrition. Through Positive Link Dyer receives substance abuse counseling at home, assistance with obtaining and understanding medical insurance, emergency financial assistance, and medical case management.

“We really work to collaborate with other HIV providers to serve as a unifying point to bring together the best clinical care for our clients,” said Jill Stowers, a licensed social worker and clinical lead manager for Positive Link. “One of the things I’ve always suspected is people with HIV rarely access primary care for an infectious disease. They still need primary care but they also need so much more.” Throughout the state, programs are geared toward the needs in particular geographical areas. Many include bilingual services and additional education about risk and prevention.

Last year, Positive Link provided services to more than 1,200 individuals living with HIV, said Stowers. “Some clients received more than one service. The breakout is about 74 percent male; 14 percent female and two percent transgender.” Additionally, about 100 clients are served through the East Central Region offices, and 85 through the West Central Region offices. “Of those clients we found out of care, 74 percent have reengaged in medical care and over 93 percent who have been back in care for over six months are now virally suppressed,” said Stowers.

Richard Root’s brother died in 1990 of complications from HIV. It was a time when society was still uncertain of the causes and effects of the disease.

“I was accused of having AIDS because I have a gay brother. Back then they thought you could get it anyway possible. I’m straight and I ran back and forth from Indiana to Kansas with drugs and women. I never thought I’d test positive for HIV,” said Root.

He attended an education workshop on sexually transmitted diseases and tested positive for HIV in 2007.

“As soon as I heard it I felt like I was marked for death. There were 30 people in the room and I was the only one crying because I knew about my brother,” said Root. Since 2007, he has relied on Positive Link to help him navigate his diagnosis.

“What I love about the program is that the clients are an amazing group of people. I learn from them as much as they say they learn from us. Since we do long term case management I have clients that have been with us since 1994,” said Julie Hiles, a care coordinator who has been with Positive Link for 25 years. She is one of four care coordinators in Bloomington. At any given time each one has a caseload of about 50-70 clients. “It’s great to see how their lives have changed and it’s great to be part of their lives and help them get stronger, healthier and become more successful.

— By T.J. Banes, Journalist, IU Health.
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Kidney Walk Brings Together Friends, Families to Celebrate

About 200 patients, friends, family members, transplant recipients and donors came together for a common cause Saturday in White River State Park – the National Kidney Foundation’s Indiana Kidney Walk.

Surrounded by his wife and three sons Greg Kaiser was all smiles Saturday. He was celebrating the gift of life. His brother Mark Kaiser donated that gift – a new kidney.

Under the care of IU Health surgeon Dr. William Goggins, Greg Kaiser received a kidney transplant on Sept. 27, 2018. On Saturday, he celebrated during the National Kidney Foundation’s Indiana Kidney Walk.

Kaiser, from Indianapolis was in good company. People came from throughout the state and across state lines to participate in the walk that raised awareness of the prevention of kidney disease and the need for organ donation.

Susan Fritz, general manager with AT & T joined her co-workers who left in a caravan of cars at 4:30 a.m. from their company call center in Rantoul, Ill. They were walking under the name “Team La Familia Tuggle,” in honor of a co-worker who had a kidney transplant.

“Indiana was the closest walk and it was worth the drive,” said Fritz. “This is a day to celebrate those who have had a transplant and those who are waiting.”

Winston, a four-year-old Collie/Golden Retriever mix joined his owner nephrology research coordinator Kimberly Swinney, and daughters Kendra and Samantha for the walk. They were part of the IU Health team “Kidney Kickers.”

Several members of the Team Indiana Transplant walked including Brook Zander who received a double lung transplant at IU Health on March 14, 2015. Other patients who participate in the World Transplant Games joined her.

A group from the Indiana Department of Corrections “The Kidney Detectives” participated in the walk in honor of inmates who receive kidney dialysis. Awaiting a kidney transplant, Martha Tebbe, who is in the care of IU Health kidney disease specialist Dr. Michele Cabellon, joined her team “Martha’s Minions.”

Team Mason raised $10,000 for this year’s Kidney Walk. The 14-member team was walking in memory of Mason Patton, who died in 2014 due to complications from acute kidney disease. His mom, Denise Patton, Crawfordsville, has spearheaded a number of fundraising and educational efforts to bring awareness to kidney disease.

Chronic kidney disease (CKD) results in damage to the kidney. It can increase the risk of other health complications including high blood pressure, anemia, weak bones, poor nutritional health and nerve damage. It’s estimated that 30 million adults have CKD and millions more are at an increased risk of developing CKD. Early detection can help prevent progression of the disease. Those at risk include people with diabetes, hypertension and a family history of kidney failure.

Tapasha Davidson received a kidney transplant in 2012 and her brother Frank Davidson received his transplant in 2013. Tapasha is back on the transplant list. Both family members were diagnosed with Focal Segmental Glomerulosclerosis. On Saturday, Tapasha joined her mother Becky Davidson for the Kidney Walk.

“We just want to help others learn more about the diseases and to spread awareness for people waiting for transplants and those who have been,” said Becky Davidson.

Young Liam Essex, 6 is one of those who is a hero in the eyes of his parents Brent and Kelly Essex. Dressed in Jurassic Park t-shirts the family, including Liam’s younger brother; Nolan came out to demonstrate the strength of their young “Renal-saurus.” Liam was born with one kidney.

“We’re here to show that he can have a normal life,” said his mom. “We wanted to come here as a family and to be here for others.”

— By T.J. Banes, Journalist, IU Health.
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Transplant patient was trapped in a trench

A former soccer player, Victor Gonzalez, 22 sustained serious injuries when he was trapped in a trench on a North Carolina job site. Now he is seeking care at IU Health University Hospital.

He describes it as a freak accident.

Victor Gonzalez was working at a construction site near his North Carolina home. He was a utility pipe layer and on Jan. 30, 2018 his crew was working near a beach community. For the most part, the day started like any other Tuesday. Gonzalez, who had worked for the job for three years, headed into the trench box of the storm drain and as always, he was supposed to be the last one to exit.

But on this day, his boss thought Gonzalez was clear of the trench when he began operating the heavy machinery that would maneuver the concrete pipe in place.

“Somebody saw me in the trench and started yelling to stop,” Gonzalez remembers. It was too late. He became trapped between the excavator bucket and the pipe.

“It was a cloudy day so visibility was low. I’m just glad someone saw me or I wouldn’t be here today,” said Gonzalez, 22. The “here” he refers to is IU Health University Hospital where he in the care of Dr. Richard Mangus, a surgeon who specializes in liver, intestine and multi-organ transplants.

The road to IU Health spans 633 miles, 17 months, and multiple surgeries.

“They airlifted me to the nearest trauma hospital that was an eight-minute flight. I went straight into OR and that’s about all I remember,” said Gonzalez, the oldest child of Victor and Marisol Gonzalez. He has two sisters, Arlette, 7 and Sonia, 18. “They told my family I had a small chance of survival. I went through five surgeries in one week.”

The accident crushed his vertebrae and resulted in internal bleeding in his left leg. One of the surgeries was done to fuse his spine; another one was to amputate his leg above the knee.

A graduate of Franklinton High School in Franklinton, N.C. Gonzalez played soccer for the Red Rams and also played on a club team after graduation. As a midfielder, he competed in more than 40 games by the time he graduated in 2015. After his accident he spent three months – March to late June 2018 – at a rehabilitation hospital in Atlanta where he received a prosthetic leg and learned to walk again.

His “can do” attitude on the soccer field kept him focused on his recovery.

“I’ve never felt sorry for myself. There were days when I could have been down but I just move on. I know I’ll be ok because I’m thankful I can walk. I met people in rehab with severe spinal cord injuries and I know I have it a lot better than they do,” said Gonzalez.

He came to IU Health in April accompanied by this cousin Vianca Valle, 21. The next phase of his recovery is repairing or replacing damaged organs.

One of his surgeries back home was to remove the majority of his small intestine and his left kidney. On Memorial Day Dr. Mangus performed a surgery to remove a fistula in Gonzalez’ small and large intestine. During his recovery he passed the time painting with art therapist Lisa Rainey. He’s also taken up cooking and he’s spent time working on his new white jeep – adding rims and tires.

“For the past year I haven’t eaten or drank. I never realized how much time I had on my hands when I couldn’t enjoy food. I had heard so much about IU Health and the great transplant program that I came here for a second opinion,” said Gonzalez. “When I met with Dr. Mangus he felt he could do surgery to get rid of the drains so I could live more comfortably while I wait for a transplant. I’ll need a small bowel and possibly a multivisceral.” A multivisceral transplant (MVT) includes the intestine combined with two or more abdominal organs. Since 2003, doctors at IU Health have performed an average of 17 multivisceral transplants annually. Last year, IU Health was one of only six transplant centers across the nation to perform more than five intestine or MVT transplants.

“I’ve learned to be patient and hope for the best. I’ve realized food is a big part of my daily life and I’m hoping I can start eating again soon,” said Gonzalez. “I really miss cereal – especially Cinnamon Toast Crunch and my mom’s cooking. She makes amazing smoked pork chops with beans and rice and in the summer I love drinking her Mexican horchata.”

Throughout his journey, Gonzalez said he has been overwhelmed by family support. His parents, older sister, cousin, and girlfriend, Dylan Harrison have been with him through all of his surgeries, doctor appointments and hospital stays.

While he waits for his transplant, he plans to move to Indianapolis and continue his recovery.

“I have been so amazed since I stepped foot into IU Health. These people have never once made me feel like my situation was critical,” said Gonzalez. “They know what they are doing. It’s been shocking – a whole different world. They have given me confidence and hope.”

— By T.J. Banes, Journalist, IU Health.
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Cystic fibrosis patient writes book about his disease

Paul Merritt isn’t just coping with his disease; he’s writing about it in hopes of helping others diagnosed with cystic fibrosis.

There are names that Paul Merritt likes to point out when he thinks about people who have overcome obstacles: Major League great Jackie Robinson; civil rights leader Martin Luther King Jr., and theoretical physicist Stephen Hawking.

The names are symbolic of Merritt’s outlook on life.

“Each new generation, wealthy and blue-collar, build a life that can endow their peers to overwhelming encouragement,” writes Merritt in the preface to his book, “The Best of Disease and Simple Ways to Improve.”

A 2005 graduate of Evansville’s Bosse High School, Merritt has never known a life without cystic fibrosis (CF).

“I have to always keep it at the forefront of anything I do in life. It’s something I have to pay attention to. It’s always on my mind, but it’s never prevented me from doing things. I like to say ‘I never let my obstacles become my boundaries.’ Even though CF has been an obstacle, it has never set my boundaries,” said Merritt, 32.

The younger son of Daniel and Penelope Merritt, he grew up with a dad who worked on cars. By the time he was in high school he became interested in dirt track racing and was on the open wheel circuit at the age of 16. After high school he worked in construction for eight years until his health started to decline.

Since 2015, he thinks he’s been in the hospital about a dozen times and is preparing to be listed for a lung transplant. Under the care of IU Health pulmonologist Dr. Cynthia Brown, Merritt recently spent a few days inpatient where he shared his experiences living with CF that resulted in his first book. The book is available through Amazon.

“I went to college to study bio technology. I wanted to get into research. I completed two years when I got sick so I decided to write my own book,” said Merritt, who married Ashley Merritt three years ago.

Raised as a Southern Baptist, he wanted to incorporate scripture into his healing. His 64-page book published by Christian Faith includes chapters about disease types, keeping hope alive, and medical innovation.

“The initial thought of disease is often defined as weakness, not strength. Why is the strength of someone associated with only physical strength?” he writes. He talks about the emotional strength it took growing up and trying to be a typical American boy – riding his bike around the neighborhood and playing sports, all the while hiding the disease he battled daily.

Merritt estimates it took him about a year to write his book and he’s already planning his second one. He wants to share the feats he’s accomplished even while living with CF – the t-shirt he was awarded for running 10 miles, his years pitching Little League baseball and a leadership award he was presented for his sportsmanship.

“So often we deny sickness instead of embracing it,” said Merritt. “I want to say ‘chronically ill is far from being weak.’ We are some of the most inspiring and strong-willed people you will meet.”

— By T.J. Banes, Journalist, IU Health.
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Respiratory therapist was once a probation officer

Amber Almendinger went to school for law enforcement with her eyes set on a career as a probation officer. She soon changed her mind and now works at IU Health University Hospital with cystic fibrosis patients.

She made a career change and Amber Almendinger hasn’t looked back since. She grew up in Burlington, Iowa and enrolled in Western Illinois University with her mind set on a career as a probation officer.

That was 20 years ago and she had just had her first child. She took a year off and decided to go back to school for respiratory therapy. In the middle of schooling she had her second child. She also has a son, 15.

“Thinking back about juggling pregnancy and school and I wonder how I did it. You just do what you have to do and I’m glad I did,” said Almendinger. “I love my patients.” In 2007 her family moved to Indiana where she began working at IU Health as a registered respiratory therapist. She divides her time between working in adult cystic fibrosis, the neuro-muscular clinic, and the pulmonary function lab. She’s in the process of receiving certification as a pulmonary function technician.

“I love the diversity of the patient population,” said Almendinger. “I feel like I would get bored doing the same thing over and over and it’s nice to see patients who are actually well and not always sick.”

As she recently entered a patient’s room Almendinger talked about ways to improve the soil for gardening – adding coffee grounds and eggshells. She said she loves the personal contact she has and the one-on-one time spent with patients.

“There’s always that one cystic fibrosis patient who can’t seem to get their treatments and things in a row. You talk to them and help them learn to do what they need to do and see the improvement over time,” said Almendinger. “I know that their life is a struggle with a chronic disease and helping them learn to work with that through education makes everything worth it.”

The respiratory care team is accepting nominations for the new “PHIL Award.” The only nationally recognized hospital-based award honors outstanding respiratory therapists. The award was created in 2006 in honor of Philip C. Lamka, who passed away from Interstitial Lung Disease. Nominations may be made at

— By T.J. Banes, Journalist, IU Health.
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