David Hedrick, MD, joined the IHTC as an adult hematologist in May. Dr. Hedrick previously served as an IHTC weekend physician from 2012-2014 and has returned to the IHTC, and his home state, after working in Jacksonville, Florida. Dr. Hedrick completed his Internal Medicine Residency and his Hematology/Oncology Fellowship at the Indiana University School of Medicine where he also attended medical school. Raised in northwest Indiana, his earliest childhood memory is desiring to become a doctor. Growing up surrounded by an aging family, Dr. Hedrick spent much time around doctors and hospitals as a child. Witnessing illness and medical care firsthand increased his interest in medicine and his natural instinct to care for others. Dr. Hedrick finds the field of hematology/oncology fascinating. He chose it because of continual advances in care, knowing it is a field that does not stay the same. Dr. Hedrick and his wife Heidi have 2 children, ages 3 (Liam) and 7 months (Cecelia). In his free time he enjoys being with his family playing, biking or swimming. He also spends time serving in several community organizations working to improve neighborhoods and communities on the near east side of Indianapolis. Dr. Hedrick says he “loves the team approach of the IHTC clinic and how dedicated staff are to patients. Everyone is willing to go to great lengths to get a patient the care they need.” Join us in welcoming back Dr. Hedrick!

news for patients, families and the community summer 2015

the clotting times

Welcome New Staff 1Matt’s Story 4 Remembering Audrey 7Hemophilia Day Back Page

August 8-9HoII Annual Meeting

August 13-15NHF Annual Meeting

August 29Hemophilia Annual Walk

Welcome New IHTC StaffIn This Issue

Upcoming Events

© Copyright Indiana Hemophilia & Thrombosis Center, Inc. 2015

helping patients thrive

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Corinne joined the IHTC as triage/clinic nurse in April. Corinne grew up on the Westside of Indianapolis in Brownsburg. Always having a love of English, she earned her teaching degree and taught high school English in Brownsburg for 5 years until her career path took an unexpected turn. Corinne’s daughter and first child was born prematurely at 29 weeks. She was greatly impacted by the care received in the St. Vincent NICU and the experience inspired her to attend nursing school. Graduating from Marian University, she chose to work in hematology/oncology as her mother-in-law died of breast cancer before she started nursing school. Corinne worked 3 years in St. Vincent’s inpatient oncology service. She became familiar with the IHTC and her interest in benign hematology grew. When a nursing position opened up at the center, she was overjoyed and immediately applied, already being familiar with IHTC’s reputation of care. Corinne says, “the IHTC’s work stands for itself. The doctors are always available for support or questions and this makes a difference in a patient’s level of trust, and therefore, their outcome. It makes a big difference.” In her free time, Corinne enjoys reading and spending time with her husband and two children at their Angola lake house, fishing and boating. She also enjoys gardening. Join us in welcoming Corinne!

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New Staff (cont.)

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Kim joined the IHTC as receptionist in February. Born and raised in Indiana, she hails from Cicero. Kim attended school for a degree in billing and coding. She also has experience working in both front and back medical office environments and immediate care. Kim’s work passion is patient care. She loves interacting with patients face to face on a daily basis. IHTC felt like home to Kim from her first day. She says “there is a lot of support from every department and there is always someone to lean on or get help from.” She is pleased to work at a center that provides patients “the whole package,” citing all the services and attention the IHTC offers its patients. In her free time, Kim plays on the IHTC softball team, having played softball throughout school. She is involved in her church and hopes to go on a return mission trip to Haiti soon. She loves being outside and enjoys activities such as fishing, hunting and gardening. She also spends much time with her niece and nephew as the favorite aunt, taking them fishing, camping and canoeing. Join us in welcoming Kim!

Sharina joined the IHTC as receptionist in March. Sharina is an Indianapolis native, born and raised in the city. She has worked exclusively in the medical field and has experience in cardiology, neurology, pediatric and plastic surgery office environments. She has also served as a supervisor at Wishard hospital and in the Emergency Department. Sharina enjoys being connected to a medical front office as she states “it is where everything begins and can help determine if a patient returns to a practice.” She says “we never know what someone is going through,” so it’s the job of the front office to help make a patient’s experience as pleasurable as possible. She finds working in the IHTC’s front office meaningful, knowing she is helping care for patients, many of whom are facing a long-term or life-long condition. Sharina is enjoying her time at the IHTC and points out that everyone seems to enjoy working at the center, and how positively that reflects on the IHTC as an organization. She also loves seeing how many patients feel the IHTC is their second home, a safe place. In her free time, Sharina loves decorating and roller-skating, which she has been doing since she was 5 years old. She also enjoys traveling to Myrtle Beach and Arizona. Join us in welcoming Sharina!

Turn the page to read

Matt’s Story

----->Corinne Hepler, RN, BSN Kim King Sharina Williams

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Keep Swinging!First came the bone chilling crack of a ball against bat, then the perfect arc of a ball sailing over the fence line and descending like a comet back to earth, this time to a street beyond the right field fence, striking the side view mirror of a car and knocking it clean off the door with a CRASH. You don’t hit a ball like that without practice – and in the case of Matt, prophylaxis infusions. (And if you’re wondering – yes, this was a homerun.)

Now a sophomore at St. Theodore Guerin High School, Matt’s abnormal bruising as a baby alarmed his parents Ken and Julie. His father, a pharmacist, immediately began considering possible causes such as leukemia. The diagnosis of hemophilia was never on his list of possibilities. Severe FVIII hemophilia. Matt’s hemophilia was caused by a spontaneous mutation, so the family was blind-sided without a prior family history. When the diagnosis was made at 7 months of age, Matt’s parents voraciously researched hemophilia – its prognosis, current treatment options and outcomes. They were discouraged by what they initially found – a future of pain, repeated bleeds, arthropathy and limited life choices. Matt’s parents agreed they would do whatever necessary to give Matt the healthiest future possible. When Dr. Shapiro began treating Matt, his parents agreed to be aggressive, beginning prophylaxis immediately rather than waiting until Matt was older.

Following family tradition, Matt began organized baseball at 7 years of age and is now playing in high school, travel and showcases; Matt plays an average of 80 to 100 games a year giving him credibility to speak on success and the hard work behind it. His daily training regimen includes running and sprints, batting practice, fielding ground balls

and agility training. So what does Matt suggest as a key to success in baseball or any activity? “Believe in yourself, push through the setbacks and never give up.”

But Matt and his father agree that perseverance isn’t the only factor in Matt’s success. The family’s two part treatment strategy is crucial. The strategy is simple – first be faithful to prophylaxis – never miss an infusion. And second is remain vigilant against bleeds, not waiting for a bleed to begin but being proactive and infusing when a bleed may occur, for example at the time of injury.

The evidence shows this treatment strategy is a success. At 16 years of age, Matt has never experienced a joint bleed, even though his hemophilia is severe. Pondering the future keeps Matt motivated to adhere to his prophylaxis schedule. As his father Ken explains “Matt realizes that even one joint bleed could lead to missed baseball games and missed opportunities.” There’s more to prophylaxis infusion than just preventing bleeds or arthropathy and pain. Prophylaxis is also a goal-booster, a dream-accelerator. Matt crushed that perfect ball over the fence, and prophylaxis was part of the strategy that enabled him to do it. Prophylaxis may have little to do with learning the skills of baseball fundamentals, but prophylaxis keeps Matt in the game and you cannot win, if you cannot play. Prophylaxis is the doorway that allows Matt to take the field and succeed as he has.

The game of baseball has been a blessing to Matt. Its benefits extend beyond the game itself. Carefully managing his hemophilia has allowed Matt to be a part of something with greater meaning – a family of friends at Guerin High School and his travel baseball teams, a place of belonging. Ken says “If Matt were to let his guard down on his treatment, he might become physically unable to participate in certain activities with friends at Guerin High School and enjoy the comradery that things like baseball provide to him.”

Matt’sStory

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Matt attests that having hemophilia has “made me even more motivated to do my best.” The teens he meets and plays with find his hemophilia interesting and are impressed that he can play at such a high level. His coaches are supportive and Matt’s parents have always provided education about hemophilia along the way. Ken observes that having hemophilia matured Matt sooner than the average kid, requiring greater responsibility at a younger age.

Though Matt himself has not experienced a joint bleed, he has a humble understanding of the costs of hemophilia, especially for those who came before him. Matt knows he would not be playing baseball today – and succeeding at it – without the struggles, perseverance and advocacy of those who went and still go before him. He is grateful for their legacy. In a symbol of gratitude, thinking of so many young boys who were unable to play the games they wanted, Matt signed one of his homerun balls and placed it on Ryan White’s grave. Later, when Matt and his parents met Ryan’s mother, Jeanne, she recalled receiving the ball that Matt left on Ryan’s grave.

Ken vividly recalls the first days parenting a child with hemophilia – the anxiety, uncertainty, and the images of all those that have struggled so valiantly. Ken’s message for other parents is an encouraging one – “Hemophilia is very manageable. You can overcome and pursue what you like…within reason of course!” Matt’s achievements are evidence that infusion therapy positively impacts the trajectory of one’s life. Thanks to prophylaxis infusion and Matt’s efforts, a full life and a bright future are ahead. Asked what might be in this future, Matt says “college baseball” with a smile. And his plan to reach this goal? “Stay on prophy and prevent any injuries” he quickly says. Like any parent, Ken has great hopes for his son too. “I hope for a successful life for him – a good job, family and to be free of worry that hemophilia will prevent him from living a full adult life.” From the look of things at the Guerin ball field, Matt is well on track for just such a life.

Ken welcomes questions from parents new to hemophilia. If you’d like to connect with Ken, please email your name and contact information to feedback@ihtc.org.

Audrey TaylorHemophilia Service Legacy in Northwest Indiana

The staff of IHTC had the privilege of working with Audrey Taylor, Nurse Practitioner, for one year before her untimely death in March 2015. Audrey began working with IHTC in 2014; prior to that she was a nurse practitioner at the Rush Hemophilia and Thrombosis center for 16 years, managing patients in the hospital during acute bleeds and surgeries, as well as in the outpatient setting. I have known Audrey since her early days at the Rush HTC. I was immediately drawn to her engaging personality and zest for life. One of Audrey’s greatest gifts was her ability to work closely with patients and families and help them to achieve the best health outcomes possible. No problem was too large and no task was too small. She tirelessly completed home visits, coordinated comprehensive clinics, assisted with hemophilia camp and educated both patients and providers across the country about bleeding disorders. Her smile, enthusiasm and truly compassion will be missed.

-Jennifer Maahs, Hemophilia Nurse Practitioner

When someone you love becomes a memory, the memory becomes a treasure.

-anonymous

Remembering

Matt’s parting words to fellow hemophilia patients on prophy:

“Keep Swinging!”

8326 Naab RdIndianapolis, IN 46260

contact the IHTC at 1-877-256-8837 | 317-871-0000 | www.ihtc.org

Where did you celebrate World Hemophilia Day?A team from the IHTC celebrated World Hemophilia Day in Kenya on April 17. The trip included a comprehensive clinic and several days of educational lectures for medical providers. The IHTC continues to further its goal to identify those in Kenya with hemophilia and to expand their available treatment options.