Young Mom No Match For Breast Cancer

Danielle Jenkins was 24 – just five years shy of the age her mother was diagnosed with breast cancer.

“Twenty-four was the age that I knew I had to do it. I couldn’t wait. I couldn’t wonder. I couldn’t worry,” said Jenkins, now 25. In February 2015, a month after she was engaged to Zachary Jenkins, she made the decision that only she could make. She underwent surgery to remove both her breasts. Her hope was that she would reduce the risk of becoming one more female in her family diagnosed with breast cancer.

Jenkins was 22 when her mother, Stacey Benamon, who was 42, died of breast cancer. An Aunt, Stephanie Mohn, also died of the disease at age 48. Her grandmother, Phyllis Dunlap, was also diagnosed with breast cancer but is now in remission.

“A week after, my grandma was diagnosed and another one of my cousins was diagnosed – we were all tested for the (BRCA mutation) gene, said Jenkins, a nursing graduate of the University of Indianapolis. “We didn’t have the gene, but because breast cancer was so prominent on the family tree, I had a double bilateral mastectomy.”

According to the National Cancer Institute, prophylactic mastectomy in women who carry a BRCA1 or BRCA2 gene mutation may be able to reduce the risk of developing breast cancer by 95%. In women with a strong family history of breast cancer, prophylactic mastectomy can reduce the risk of breast cancer development by up to 90%.

Jenkins saw her decision as a risk-reducing surgery.  She saw it as a way to minimize her chances of developing the cancer that had already touched her life deeply through loss of her beloved family members.

“Everyone thought it was like it was amazing that I did this, but I always knew I’d do it. I talked to a doctor when I was 15 or 16 and I knew this was the best path for me to take. It never seemed like an option. There was not a huge risk in doing the surgery and I felt there was a bigger risk in not doing the surgery,” said Jenkins, the mother of a little boy, Owen, who is nearly a year old.

Jenkins knew going into the surgery that based on her family history, surgery may not eliminate her risk but it gave her better hope for the future.

“I thought about it a lot and I thought about not being able to breast feed. I thought about my self image but in the end, it came down to the fact that in my mom’s generation of girls – all were diagnosed with breast cancer.”

Jenkins doesn’t remember a lot about her mother’s fight but she does remember the ups and downs of the chemo infusion.

“She’d be tired one minute and have a burst of energy the next. She was eating like a rabbit and losing weight.”

It’s a memory she experiences firsthand as an oncology nurse.

“I was skeptical about going into oncology at first because it’s so close to home but I fell in love with it.”

Jenkins tells stories about a patient who drove four hours for treatment and got up early enough to bake her a homemade apple pie. “It was the best pie of my life,” she says. She understand that most patients want to think beyond their diagnosis, so she once turned a patient’s bed so he could see the fireworks outside his window. Another time she moved a patient to see the fish tank, and another patient to see the downtown skyline.

“I do get attached and I’ve learned a lot from my patients,” said Jenkins. “I love to hear their stories, especially when they say, ‘do you want to know my secret to life?”

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

Dr. Anna Maria Storniolo: What it Takes to Battle Breast Cancer

She sits with a stoic presence and holds you with a soldier-like stare when she speaks passionately about breast cancer–and the passing and survivorship of her patients. As an oncologist in the field for the last 30 years, Dr. Anna Maria Storniolo has been in the trenches, serving as a physician, researcher, advocate and innovator. “There are aspects to breast cancer, that no matter what you throw at them, the disease will always win. It’s a challenge that takes stamina.”

Certainly, research and science rise and fall with the passage of time but it’s how a provider pivots and moves through those moments that truly count. “You have to embrace change,” she says. “I’m a big believer in allowing life to happen.”

And it did: but becoming a breast cancer specialist wasn’t always in the cards for this doctor.

Growing up in Milwaukee, Wisconsin, she, like most physicians, fell in love with science. Dr. Storniolo headed to Harvard University after high school where she says medicine began to feel like the right fit, “I liked the puzzle pieces of internal medicine, putting together the full picture to help patients and solve problems.” Medical school at Stanford University followed before the physician completed her training in Rochester, New York. She focused on cancer.

“It became clear back then that the whole field of oncology was about to explode,” recalls Dr. Storniolo, “scientifically, we were about to learn a lot more about cancer, its development and how it grows. It’s something I wanted to be a part of.”

She started her career as a drug researcher. “I worked at Eli Lilly for 10 years and helped them develop a drug called Gemzar–which was the first oncology drug that they had launched in over 25 years.”

Eventually, though, the physician started to miss patient care. So, in the fall of 2000, Dr. Storniolo moved to IU Health–and has been happy ever since. “IU Health offers a unique blend of forward-thinking science and superb clinical care. The structure of ours clinics are created in a way so that patients never feel alone. There’s always a place for them get answers.”

Dr. Storniolo is always armed with answers, as well as a marker and white board.

“There is absolutely nothing in medicine that you can’t explain to a patient,” she says. “When I get my marker out that surprises some. They say they’ve never seen a doctor do that —when I start drawing and explaining to them how breast cancer and the drugs work. Cancer is so frightening and the drugs can sound so complicated. So, if I can demystify it for patients to help them feel more empowered, then I’ve done my job.”

In addition to patient care and breast cancer research, Dr. Storniolo is the founder and director of Indiana University Health’s Catherine Peachey Breast Cancer Prevention Program, which began in 2001. The program, which was started at University Hospital, now includes IU Health North.

“We see women who are high risk–for any reason. Some have strong family histories or genetic mutations, others don’t. We’ve put in place a process at the time of breast screening at IU Health to help us understand which women are high risk for the disease. Once we identify these patients, we ask them if they want to partake in our program which can include services like genetic counseling, MRIs, ultrasounds or evaluation of blood markers.”

The approach has made an impact. “We’ve caught a lot of early cancers,” she says.

But who was Catherine Peachey?

“Catherine was one of the earliest breast cancer advocates in Indiana,” recalls Dr. Storniolo. “She was responsible for the passage of Indiana’s off-label drug law. The big cancer drug at the time was called Taxol and it was in short supply. When the FDA approved a drug they approved it in a narrow way so those who didn’t fit that criteria couldn’t have it covered by insurance. When Catherine was sick there weren’t many drugs for breast cancer. She advocated for expanding the use of Taxol and other drugs, turning them into ‘off label’ options [making them available to more cancer patients with various circumstances]. Indiana was one of the first states to implement this kind of law, so Catherine left quite a legacy.”

Tragically, Peachey never lived to see the fruits of her labor. She passed away in her thirties but the prevention center lives on in her name. “Our team consists of several physicians, nurse practitioners, genetic counselors as well as a menopause specialist. If a patient needs imaging or surgery we refer them for those services, too,” says Dr. Storniolo. 

Working in a world that focuses on cancer could be overwhelming to some but Dr. Storniolo says she simply takes each day as it comes. “Living is about learning,” she says. “And I love the fact that I learn something new here every single day.”

— By Sarah Burns

What Patients Can Expect: Future of Breast Cancer Screenings

Here are some numbers that relate to breast cancer detection and self care:

  • 40 – the age recommended for women to have annual mammograms.
  • 50 – the percentage of cancers in women with dense breast tissue that can be missed by standard mammograms.
  • 40 – the percentage of women who have dense breast tissue

What is dense breast tissue?

The Breast Imaging Reporting and Database Systems, (BI-RADS) which reports the findings of mammograms, also includes an assessment of breast density by four groups:

  • Mostly fatty: The breasts are made up of mostly fat and contain little fibrous and glandular tissue. This means the mammogram would likely show anything that was abnormal.
  • Scattered density: The breasts have quite a bit of fat, but there are a few areas of fibrous and glandular tissue.
  • Consistent density: The breasts have many areas of fibrous and glandular tissue that are evenly distributed through the breasts. This can make it hard to see small masses in the breast.
  • Extremely dense: The breasts have a lot of fibrous and glandular tissue. This may make it hard to see a cancer on a mammogram because the cancer can blend in with the normal tissue.

Breast density is not based on how your breasts feel during a self-exam or a doctor’s physical exam. However, breast density is determined through a mammogram.

Cancers appear as white objects in a breast x-ray. If a white object is shown on a white or dense background it’s much harder to see than if presented on a dark or background. Improved screenings can better detect those hard to see cancer spots.

Early Detection: Since 1990, the death rate from breast cancer has significantly declined. The reason? Early detection and more sophisticated breast screenings.

Following are some responses from Doctor Patterson about those advances:

When 3D mammography (digital breast tomosynthesis) was introduced it was called a revolutionary new screening and diagnostic breast-imaging tool with the ability to improve early detection of breast cancer. How does that work?

“Tomosynthesis is a new and improved mammogram and starting to replace the 2D mammogram. We know it’s better and can better detect cancer. Most IU Health centers have 3D mammograms. Up until two months ago, we gave women the option of 3D. There are a few women who we don’t do 3D because their breast are large enough that the 3D images are not as clear.  It is definitely appropriate for women to ask if they are a good candidate for 3D mammography.”

It’s been reported that the more dense the breast tissue, the greater the risk of masking cancer detection. Ultrasound, when combined with mammography, can increase the accuracy and detection of breast cancer in dense breasts by 35.7 percent. What else can be done to help patients know that they have received the best scan possible?  

“We are now being trained on Automated Breast Ultrasound Screening (ABUS). IU Health is the first provider in the state to use this technology. Our overall goal is personalizing what is best for our patients. Using ultrasounds for breast cancer screenings is not new, but the equipment is more sophisticated. What we know is breast ultra sound can detect more cancers. As the technology has improved with automated ultra sound, the images are so much better and we can decrease the false positive rate. Another advantage to this type of ultrasound is that handheld ultrasounds could take up to an hour to complete. Now the automated ultrasound can be done in about 12 minutes. We hope to begin scheduling patients by the end of the month. This will be for women who have a high risk of breast cancer.

How do health providers provide the best follow up screenings for patients?

“A lot of health facilities offer risk assessments. So if the patient for instance, has a family history and may be at a high risk, they may be recommended for additional imaging. Other patients with dense tissue may be recommended for the breast ultra sound. Our ultimate goal is do the screenings right there so they will know. We encourage patients to talk to their doctors about the best options.”

Additional resources about dense breast tissue:

  • http://densebreast-info.org
  • http://www.areyoudense.org

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

A Little Makeup Goes a Long Way

On the day before her 56th birthday, Jackie Backus found a reason to smile. On July 21, she found a lump in her breast and not long after she started chemo, she began losing her hair.

But on a recent weekday, she opened up a pink zipper bag filled with every woman’s version of eye candy – hundreds of dollars worth of complimentary makeup. She spent the next hour with two cosmetologists who taught her to apply the facial products and also how to create beautiful headpieces to crown her head.

“The reality started to hit when I started losing my hair and I really got into a funk,” said Backus, a mother and grandmother. “I just want to smile.”

Loni Wilson, a cosmetologist, has volunteered with the American Cancer Society for eight years to present “Look Good…Feel Better,” a free service for women facing cancer. The American Cancer Society is a partner with the IU Health Cancer Resource Center.

The makeover started with concealer: “We can’t change everything but we can make you feel better,” said Wilson. And Backus learned a few pointers along the way:

  • The ring finger is used to apply foundation and eye shadow because there is less pressure.
  • If you use makeup brushes, clean them daily to reduce bacteria.
  • Apply foundation up through the hairline, to conceal the forehead in case the wig slips.
  • Eyeliner will help make the eyes brighter if the lashes fall out.

After the makeover, Wilson showed Backus how to tie scarves and accessorize her look so there is less emphasis on her head and more emphasis on the style.

Backus left with a smile and plans to celebrate her birthday with a night out.

“I come from a long line of strong women and I want to be strong for the women in my family. This helps.”

— T.J. Banes

Methodist’s Newborn Chief: ‘Touching Babies At The Very First Moment’

“The benefit and the power we have to influence a baby and a family’s life right from the get go? It is so powerful.” – Emily Scott, M.D.

There they are inside each room. Newborns who just entered the world. There they are with their fuzzy heads and pink chinks and startled cries. There they are with their entire lives ahead of them.

Emily Scott, M.D., never takes for granted the power she has to influence a life right from the very start, the opportunity she has to get a baby started on the right path within minutes of being born.

That’s what drew Dr. Scott to pediatrics — the impact she could have on children by starting them off healthy. After all, much of pediatrics is not about disease treatment but about disease prevention — talking about healthy eating habits and exercise and safety.

“Really, when you boil that down, the very first place you can start that is here,” says Dr. Scott, medical director of the well newborn unit at IU Health Methodist Hospital. “I really love the idea of being able to touch babies at the very first moment and educate parents and empower them and make them feel like, ‘Yes, you’ve got this. You can do this.’” 

It’s a joyful place to work, in the mother baby unit at Methodist. For the most part, the patients are healthy. For the most part, interactions with families are fun and lighthearted and bring smiles.

“What color are my babies eyes going to be?” parents will ask Dr. Scott. Honestly, she has no idea – yet. “How do we bathe the baby?” Dr. Scott will show them. “When is my baby’s cord going to fall off?”
“I’m having trouble breastfeeding.” Dr. Scott is relentless in helping with that. She educates on breast milk being best, on safe sleep, on how to care for baby’s nails, on how to swaddle.

And that’s exactly what Dr. Scott loves about her job — the medical world colliding with teaching.

As medical director of the unit, Dr. Scott’s job is to make sure the newborns are taken care of. Moms are cared for by her obstetrician counterparts. Dr. Scott also supervises a team, which includes a pediatric resident, a family medicine intern and two or three medical students every day.

She and that team see about half the newborns on the floor. On any given day, that can range from two babies to 22 babies.  

“You walk from room to room and you just never know what you’re going to get, so you really just have to stay on your toes,” says Dr. Scott. “It makes it a really cool place to work.”

The Making Of A Doctor

She was 4 years old when the medical world entered her mind. Her mom was pregnant with her sister and she would go to those doctor’s appointments.

People would ask Dr. Scott what she wanted to be when she grew up. That tiny 4-year-old girl would say: “I want to be an obstetrician.”

The lure for her then was to get to work with moms and babies. As she grew up, she was also interested in being a teacher. 

“I really feel like I got the best of both worlds with this,” she says. “I’m both a doctor and a teacher.”

Born in St. Louis, Dr. Scott’s family moved every two to three years when she was growing up. Her dad worked for Toshiba and was frequently transferred to help set up new offices.

Dr. Scott lived in St. Louis, Denver, Philadelphia, Houston, Providence and Cleveland. Though she was shy, the regular switching of schools made her come out of her shell. It also made her very close to her family, including her sister and a younger brother, because they were the constant in her life.

As she grew up, Dr. Scott was in plenty of activities. She played viola in the orchestra, was in the Latin club, on the math team and did academic decathlon.

As an eighth grader, she won the national Latin exam and had her picture featured in “USA Today.” She’s still not sure why, but her photo was put in the sports section, which is still a running joke in her family. After all, Dr. Scott is admittedly not athletic. She even got kicked out of a tumbling class, called Tumble Tots, as a little girl.

“Even now, my family says, ‘That’s our daughter who is so uncoordinated she got kicked out of Tumble Tots, but made the sports page of USA Today,’” says Dr. Scott, who adds, “I was nerd city.”

Because she was a National Merit Scholar finalist, Dr. Scott went to the University of Tulsa for her undergraduate degree for free. She wanted to save money for medical school and the university had a good undergrad research program.

Even the summer before her freshman year, she was studying fruit fly genetics. She graduated with a major in biology and a minor in chemistry, then went to Baylor College of Medicine in Houston for medical school.

By that time, her family had settled in Indianapolis and Dr. Scott wanted to be close to home. She came back to do her pediatric residency here, finishing in 2009. Then, she was chief resident before joining the faculty in July of 2010.

Her first job was a newly-created position of a nocturnist at Riley Hospital for Children at IU Health. She would spend the night in the hospital as the attending physician. She also worked at IU Health West Hospital.

In December of 2013 she came to Methodist and the following summer she was made medical director.

More With Dr. Scott

What she loves…“I love the diversity in our job. I love being able to teach our medical students and residents. The cutest thing is when I have a third-year medical student come on the unit and they’ve never held a baby before. They don’t even know how to pick a baby up. I say, ‘Well, OK. We have got to learn this.’”

Advice to a young newborn doctor…“To always remember the patient is a kid. Keep in mind, you’re dealing with kids and dealing with parents. Sometimes you lose sight of that. The medical overtakes the common sense sometimes. They’re first time parents. They’re scared out of their minds. They have no idea what is in store for them. Have common sense, courtesy and respect for the family unit.”

Best thing a family has ever said to her…“I had a family ask, ‘Can we just take you home with us?’”

Most memorable patient story…“My favorites are always the first-time moms who really want to breastfeed and start off not so stellar, but by the time they’re going home they are in a really good spot. I love those. It always makes me feel like we did a good thing for those families because if they have a good experience the first time, they will breastfeed the next time.”

Premature babies or opioid dependent babies…“With the premature newborns, we try to keep them with mom rather than going straight to the NICU. Our whole philosophy here at Methodist is if baby is stable and safe to stay with mom, we really try to keep them together. We just feel like bonding between mom and baby is so important we try to minimize that separation as much as possible.” The philosophy is the same with opioid-exposed babies.

Why that is so important…“We talk a lot about the fourth trimester. When baby is first out in the world is when mom and baby are learning about each other. Mom is working on breastfeeding. The safest place that baby feels is up against mom’s chest or dad’s chest. We know babies eat better, they thrive better, they sleep better if they can be right with their parents.”

Her family…She is mother to 6-year-old Frances and 1-year-old Ambrose (who goes by Brose). They love to go to the park, play outside and read – truck books for Brose and puppy and bunny books for Frances.

Outside of Methodist…Dr. Scott is co-chair of the Perinatal Infant Mortality Committee for the Indiana American Academy of Pediatrics. She is the chapter breastfeeding coordinator for the state as well. She does breastfeed education all over the state. She works closely with Indiana Perinatal Quality Improvement Collaborative on neonatal abstinence syndrome care and care for opioid exposed babies. “You also have to know what sources are available in the community,” Dr. Scott says. “And how to get people help if they need it.”

— By Dana Benbow, Senior Journalist at IU Health.

   Reach Benbow via email dbenbow@iuhealth.org or on Twitter @danabenbow.

Delicious Fall Comfort Foods You Can Feel Good About

Fall is here, causing more of us to crave warm and toasty comfort foods. Unfortunately, many of these dishes can be higher in calories and fat. The good news: I’m here to offer you some tasty, healthy and slimming alternatives.

As a registered dietitian nutritionist, I work with bariatric patients at Indiana University Health, to help them lose weight in preparation for surgery. In addition to being followed by a team, patients also receive individualized nutrition counseling post-operatively. We work together to identify barriers and solutions throughout their weight loss journey.

For me, it’s a personal win to see my patients discover that eating healthy can be enjoyable and delicious. I love being able to help people integrate nutrition, fitness, and wellness to create long lasting lifestyle changes.

Wondering where to start? Try these healthy alternatives to cut fat, sugar, and calories – without sacrificing any flavor. You’ll also sneak in some added health benefits.

  • Turkey Chili – Swapping out ground beef for ground turkey can make this hearty recipe a little leaner. Consider joining the ‘Meatless Monday’ movement by making it vegetarian. You can use tofu crumbles, sweet potatoes, or even extra beans and veggies.
  • Butternut Squash Mac & Cheese – Swap half the cheese with savory and fiber-rich butternut squash for some added nutrients and taste! Added bonus: swap out half the noodles for cauliflower.
  • Chicken Soup – Swap out regular noodles for whole grain, or omit them completely. Make your own homemade soup using a whole chicken, fresh veggies, herbs, and broth to create this delicious and nutritious family favorite.
  • Chicken Pot Pie – Simple swaps, like using almond milk for heavy cream and only one vs two pie crusts, can really lighten up a dish, cutting a significant amount of fat and calories. You will be impressed at how doing so will also cause you to taste more natural flavors from the vegetables.
  • Baked Apples – Instead of apple pie or crisp, try this recipe. In the oven or microwave, this delicious fruit can satisfy any sweet craving. With a little sprinkle of cinnamon and nutmeg, you won’t need added sugar.

— By Katie Hake, RD
   IU Health 

Surgeon Offers Best Care For Patients With Breast Scare

She was sitting in the McAllister’s parking lot, pregnant and crying when she called her brother in New Orleans and broke the news. Doctor Kandice Ludwig’s mom was diagnosed with lung cancer in 2013. She died two years later.

Dr. Ludwig had been in practice about six years at the time.  She was a mother, a daughter, a sister, and a wife. She could relate to her patients. But that moment when she viewed her mother’s scans, her sensitivity was heightened.

“When I was thrown into that daughter role, I understood the urgency and the waiting for test results and seeing the side effects of treatment,” said Dr. Ludwig. She also saw firsthand the impact on the spouse as she watched her dad navigate the rough waters of losing a loved one.

***

“I had a conversation with a women yesterday who has had a string of bad news. When I called her with more bad news she was preparing to get a port for her chemo. She said she feels bad for her fiancé because he has to sit around and watch her go through infusion,” said Dr. Ludwig. “I told her, ‘he can drive you to infusion, he can sit with you through infusion, and he can help fix you meals. He has a purpose. I think I’m a better doctor for experiencing that with my parents.”

At 41, Dr. Ludwig is the youngest of three and the only daughter in a family raised in New Orleans by a mother who was a biology teacher and father who was a police officer. One of her brothers is an orthopedic surgeon and her husband, Aaron Ludwig, is a urologist. Together they have a daughter, Harper, 6, and a son, Nolan, 4.

“I don’t think I practice differently now from before I was a mother, but because I’ve practiced for 10 years, I’ve always had a special place in my heart for young patients – the young survivors who are trying to get their kids to soccer practice, continue working, and maintaining a home, and will do whatever it takes to beat cancer,” said Dr. Ludwig.

Many of those young moms find support through groups like the Young Survival Coalition (YSC), an organization founded in 1998 by three young women who were under the age of 35 when diagnosed with breast cancer. One of the things Dr. Ludwig likes the best about her role with IU Health is working with the breast care team to help connect patients with resources and support.

“I had a woman I operated on last week and she looked at me through tears and said, ‘are any of your patients happy to see you?’ said Dr. Ludwig.  “I said, ‘yes, at some point these visits will be social and we will talk about our kids, our vacations, and our families.’”

***

The road traveled to that point often seems endless for some patients.

About one in eight women are diagnosed with breast cancer at some point in their life.  Today there are more than 2.8 million breast cancer survivors in the United States.

“Breast cancer is such an emotional disease,” said Dr. Ludwig. “Most other types of cancers don’t come with choices. With breast cancer it is fortunate that we often can offer patients choices – different types of surgery – and allow them to be a partner in their plan.”

The cancer that begins in the breast tissues may form cancer masses or tumors. It can advance to other tissues and spread to lymph nodes and metastasis to other parts of the body. In cases where surgery is needed, the choice patients may face are a lumpectomy (where a lump is removed through an incision, preserving the shape of the breast) or a mastectomy (removal of one or both breasts). Women may opt for breast reconstruction to rebuild the breast after surgery.

The main goal of reconstruction is to preserve a woman’s femininity, said Dr. Ludwig. “If a woman just wants to look symmetric, we can do that with bras and clothing, but if she wants to look symmetrical in a bathing suit then we are fortunate at IU Health to have some amazing plastic surgeons who can create new breasts. Our practice across the board is to try to save nipples whenever we can. It matches the other side more likely and saves them additional surgery. Taking the nipple would be a third operation,” said Dr. Ludwig.

***

How is it determined if a patient needs a mastectomy?

A lot depends on the size of the tumor. In other cases, there are patients who can’t have radiation maybe because their cancer is a reoccurrence or because they have an autoimmune disease, said Ludwig. Then there are the patients who carry genetic mutations and doctors discuss with them that they may be at risk for reoccurrences.

Since she began practicing, Dr. Ludwig said there has been both a local and national trend of women increasingly opting for mastectomies. The reason?

“Historically we only had the ability to test for two genes. Now that technology has become commercially available we can test up to 20 genes at the same time. We are also adding MRIs when women are initially diagnosed to better identify small hidden cancerous areas,” said Dr. Ludwig.

***

One of the hardest things for patients is making that choice – that final decision.

“Everyone approaches it differently. Some women feel betrayed by their body and their breasts. Others suffer with their loss of femininity,” said Dr. Ludwig.

“The majority of our patients who are candidates for lumpectomy who choose mastectomy are doing it for a psychological peace of mind. We tell them that removing those extra breast tissues does not extend their life, but they still want to take that chance. They are focused on living out their lives – watching their children on the soccer field, seeing them graduate and enjoying their grandchildren.”

Breast care team members help each patient navigate every aspect of treatment – from securing transportation to resolving financial issues.

“One of the most humbling things for me is that sometimes I only see a patient once before surgery so there is that quick and deep development of trust,” said Dr.  Ludwig. And when they do meet her, they often ask a heartfelt question: “What would you do if it were your mother?”

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

Methodist’s Groundbreaking Technique Will Save Trauma Patients Bleeding To Death

A tiny balloon is about to do huge things. It’s about to buy trauma surgeons critical time to save lives.

IU Health Methodist Hospital’s trauma team – inside its Level I trauma center – is in the midst of training on a groundbreaking technique to save patients who are rapidly bleeding to death.

Patients brought in severely bleeding from injuries to their chest, abdomen or pelvis will undergo a quick procedure that will stop the bleeding and allow them to be taken into surgery. 

The way it works:

This is an endovascular technique, where a tiny puncture is made in the groin and a little wire – a flexible catheter – is placed in the femoral artery.

That catheter is then maneuvered up toward the aorta. At the upper tip of the catheter, a tiny balloon inflates.

That balloon will, essentially, stop any blood flow beyond the balloon. It is a temporary fix used only for the most serious of trauma injuries.

“It buys us that time so they stop bleeding for that 15 or 20 minutes,” says Methodist trauma surgeon Jennifer Hartwell, M.D. “So, we can get them upstairs and get them to the operating room and do what we need to do.”

The trauma team is going through training now. It expects to start using the procedure — officially called REBOA (resuscitative endovascular balloon occlusion of the aorta) — by the end of the year

Image provided by Pryor Medical Devices, Inc.

— By Dana Benbow, Senior Journalist at IU Health.

   Reach Benbow via email dbenbow@iuhealth.org or on Twitter @danabenbow. 

Subtle Body Clues That Can Signal Serious Health Problems

When is a seemingly cosmetic issue the sign of a more serious condition? Scott Renshaw, MD, family medicine physician at Indiana University Health, decodes some common issues.

Broken blood vessels in your eyes 
These bright red patches on the whites of your eyes are usually painless and harmless. Simply sneezing or coughing can cause them, but in some cases broken blood vessels may be a sign of hypertension. As blood pressure rises, the tiny vessels may twist and break.

A sore mouth or tender tongue
You may be low in vitamin B12. Strict vegetarians and vegans are at an increased risk of deficiency since naturally occurring B12 is found mainly in animal products.

Stubborn pimples 
Adult acne isn’t uncommon, but for some women it may indicate polycystic ovary syndrome, a hormone disorder that can lead to infertility, diabetes, and heart disease. Other symptoms include irregular periods, excess facial and body hair, and weight gain.

Hair loss 
Excessive shedding is often due to stress, but it may be a sign of iron deficiency. Hair loss also occurs in people with hypothyroidism, a condition in which the thyroid gland fails to produce enough thyroid hormone. Other symptoms include fatigue, weight gain, and muscle weakness.

Facial flushing 
Constantly red in the face? You may have rosacea, a chronic skin condition that causes flushing, burning, and small bumps that resemble acne. If the redness is limited to a butterfly-shaped rash on your cheeks and the bridge of your nose, that may be a sign of lupus, an autoimmune disorder that can damage your blood vessels, joints, and organs.

A red bump on your limbs
It may just be an ingrown hair, but if the lump feels hot and tender, it could be cellulitis, which occurs when bacteria (often staph) gains entry through a wound. The infection can spread, so it’s important to see your doctor ASAP.

She Has Outlived Her Cystic Fibrosis Diagnosis By 51 Years

When things got the worst, when they got the scariest, Tonja Talley weighed 77 pounds.

When she took a breath, it felt like she was sucking through the tiny hole of a coffee stirrer. A short walk to the mailbox felt like miles.

When she took a shower, she would have to get out, sit on the side of the tub for 15 or 20 minutes just to catch her breath – just so she could get dressed.

She was a young woman in her late 30s, yet in the depths of her soul and her heart and her body, Talley knew the end was near.

On Christmas Day in the year 2000, as Talley watched her daughter Mary unwrap her gifts, she knew.

“I knew just within myself that my time was coming. I knew within my body that it was conking out,” says Talley. “I remember saying a prayer to myself as I watched Mary that Christmas. ‘If it’s going to happen, just don’t let her be around when it does.’”  

Talley desperately needed new lungs. Without them, she wouldn’t make it to the next Christmas.

***

Her parents started noticing when Talley was just a baby. She wasn’t thriving. She was tiny. She wasn’t gaining weight. At first, doctors weren’t concerned. Talley’s parents were both very thin.

But then when Talley was one year old, her parents got a devastating diagnosis. Their daughter had cystic fibrosis.

Doctors took her mom and dad into a room. The pediatrician told them Talley most likely would not live long enough to go to kindergarten. Age 5 is the longest most kids lived.

And then things got worse. As Talley’s parents went searching for answers to this disease, talking with people and seeking assistance, some encouraged them to put Talley in a facility for cystic fibrosis patients.

“You have to understand that time frame back in 1962,” Talley says. “Back then, if they didn’t understand, they put you in a home.”

Her father and mother immediately said no. They would be keeping their daughter with them.

“They wanted me to live as normal a life as possible,” she says. “And it was in God’s hands as to when my time would come.”

But that time never came. Talley made it to kindergarten and high school and college. Most patients with cystic fibrosis who make it past childhood live to an average age of 37.

Talley is now 56. And she is grateful for every day she’s gotten. 

“Looking back on everything, I would not trade it,” Talley says. “I’ve learned a lot. It’s been a very good life. I thank God every day that I’ve had this chance.”

***  

But it was never easy. Not any of it.

As a child, Talley was teased at school for coughing so much and for being too skinny. She would go home and cry in her mom’s lap as she brushed her hair, asking, “Why did God do this to me?”

Cystic fibrosis is a progressive, genetic disease that causes a thick, sticky buildup of mucus in the lungs, pancreas and other organs. That mucus in the lungs clogs the airways and traps bacteria leading to infections, extensive lung damage and, eventually, respiratory failure.

Growing up, Talley’s father had to pound on her back and on her chest every day twice a day to help break up that mucus and get it out of the airways. It was a routine for Talley, once in the morning before school and once in the evening before she went to bed.

Talley, who grew up in Muncie, Ind., did chest percussion exercises, breathing machines, took different medicines and, until she was 7 years old, slept under a mist tent.

That all ended one day when a friend came over to play. He started questioning that strange tent. Talley felt embarrassed. That night, she told her parents that she would never use it again. They said OK, took it off her bed and that was that.

“I really felt very blessed I had parents who did everything they possibly could for me,” she says. “They really let me live a childhood life.”

And miraculously, all throughout that childhood, Talley never was hospitalized. It seemed like this disease might just be sparing Talley its toughest challenges.

But then, everything changed.

***

The first time Talley was hospitalized happened her freshman year at Ball State University.

Once she graduated and started working full time in information systems at AUL (now OneAmerica) in Indianapolis, her body started wearing down.

She wasn’t spending the time she should have doing her chest percussion. There wasn’t anyone to pound for her. So, she would pound on her own chest and, to get her back, she had to thump herself up against a wall.

While working at AUL, Talley was hospitalized multiple times at length. After one of those stays, her doctor looked her in the eyes and told her: “You either need to quit your job or I will see you at your funeral in less than a year.”

That was 1988. Talley was 27 years old. It was a wakeup call.

Talley — who had met a wonderful man named Emet Talley at AUL and was married by then — quickly took her doctor’s advice. She put in her two weeks notice. 

Once at home, Talley started a balloon company out of her home. But she continued to get sick and eventually had to give that up, too.

All the while, she desperately wanted a baby. Doctors had always told her that would be “iffy for her health.” But while on a trial drug that loosened up the mucus throughout her body, Talley became pregnant.

There was never any question on how the couple would move forward. “I will risk my life to have this child,” she remembers telling Emet.

Little Mary was born and in the hospital room Emet said to his wife, “Isn’t she the most beautiful thing you’ve ever seen?”

“This whole walk,” Talley says, “has been God showing me there are daily miracles.”

 ***

The next few years, however, were a roller coaster. Talley could keep up with Mary for the most part. And then she would be tired. She would feel great and then she would feel like everything was a struggle.

Mary was always so good, even as a toddler. She knew playing with mom meant sitting next to her with a coloring book or reading. She even knew how to screw in the clamps for the IVs her mom needed when she was recovering at home after a particularly bad time.

After struggling with the decision to get a transplant or not, Talley eventually decided she must. One doctor told her, “You’re going to run out of time.”

She almost did. Less than three weeks after that Christmas in 2000 when Talley thought the end was near, she got a call that her new lungs were available.

It was Jan. 16, 2001 about 2:30 a.m. She and Emet woke up Mary and headed to IU Health Methodist Hospital.

When her surgeon, John W. Fehrenbacher, M.D., came out to talk to Emet after the surgery, “he told Emet that when he took my lungs out of the chest cavity, they fell apart in his hands,” Talley says.

“Their job was done.”

***

It was like being free.

“I woke up and I have never ever felt such a refreshing breath of air to breathe as I did that day,” Talley says. “It was so easy to breathe.”

When Mary came in to see her mom, she told Talley she liked that she wasn’t making the “raspy noise” anymore.

After recovering from the transplant and going home, it was like Talley was living a different life. She could go to the neighbors’ swimming pool and hold her breath under water, long enough to do handstands with Mary and the other kids.

She could go on walks and look at bugs and flowers. She could climb mountains. 

And she could laugh. Before the transplant, Talley had stopped laughing – because she would start coughing and the blood would come up.

“After the transplant I could laugh again,” Talley says. “There is so much joy in that.”

And for the past 16 years, Talley has found so much joy in life. She’s been, for the most part, healthy and had few complications.

That has everything to do with her attitude, says David W. Roe, M.D., Talley’s pulmonologist at IU Health.

“Tonja is a wonderful patient and, more importantly, a wonderful person,” says Dr. Roe. “She has always treasured her gift of transplant and consistently taken care of herself since her transplant.”

She is compliant with her treatments and medications and, Dr. Roe says, he is grateful for her involvement in the transplant program.

Talley now is a bright light for those considering transplants. She is on a contact list for anyone in the nation and beyond who is weighing the decision of a transplant. They can ask her questions and she answers them honestly. She’s talked with patients from Florida, California, Indiana, Canada, Wyoming and Texas.

She tells them she takes 36 pills a day. She tells them the medicine can mess with her mood. She tells them things haven’t always been easy.

But then, she tells them the good stuff. Talley has used her story and testimony all over, speaking about how God has worked in her life. She volunteers at food pantries and Bible studies and makes quilts.

She knows the gift she has been given.

“I haven’t met a transplant patient who will tell you they aren’t scared every day,” she says. “We are very aware that the next moment may be our last. But we are also thankful, so very thankful.”

— By Dana Benbow, Senior Journalist at IU Health.
 Reach Benbow via email dbenbow@iuhealth.org or on Twitter @danabenbow.