Haley Hodgen was an avid volleyball player in high school and was training for the Indianapolis 500 Festival Mini Marathon when she became seriously ill. She ended up at IU Health where she received not one – but multiple organ transplants.
By IU Health Senior Journalist T.J. Banes firstname.lastname@example.org
On what was the first day to register for next year’s 500 Festival Mini Marathon, Haley Hodgen sat in her office in the landmark 500 Festival building. Her cubby in the offices occupied by Williams Randall Advertising included the following: pill boxes, white bins filled with snacks, a blood pressure cuff, and a black and white photo of a woman who could almost be her twin.
That woman was Hodgen’s 24-year-old organ donor. Hodgen knows that the young woman saved five lives – one of them was Hodgen’s. She says her donor was one half of the life-saving team. The other half was IU Health transplant surgeon Dr. Richard S. Mangus.
“Dr. Mangus saved my life a year before transplant because in 2014 I lost my original intestine to a blood clot,” said Hodgen. A year later, on Aug. 17, 2015, she was back in the OR with Dr. Mangus for a multivisceral transplant – stomach, pancreas, liver, small and large bowel.
There’s some irony in the fact that Hodgen’s office is in the 500 Festival Building. She was training for the Mini Marathon when she first became ill.
“I’d been healthy all my life running half marathons working hard and living like a normal 24-year-old when I started getting sick,” said Hodgen. She was baffled when she started losing weight, experienced severe abdominal pain and learned her spleen was enlarged. Over time she began to lose her fingernails and toenails –a result of a lack of nutrients absorbed into her body.
“One day I’d run ten miles and the next day I could barely take 20 steps without my body cramping. During a procedure with IU Health gastroenterologist Dr. John DeWitt a blood clot was discovered in her liver, a very serious condition. In a matter of days the blood clot spread to her small intestine causing her to go into emergency surgery to remove her small intestine. She spent three weeks in the hospital.
“It is 21 feet long and I only had three feet remaining after surgery,” said Hodgen. “They told my family I needed multi-organ transplant and they thought it was crazy. I’d been healthy all my life.” She tried to maintain her life with what remained of her small intestine. But she knew her body was severely impaired. Even with a huge weight loss she said she looked eight months pregnant. Her eventual diagnosis was a rare genetic mutation, myeloproliferative disease, characterized by blood clots.
“I had no quality of life. I was a ticking time bomb. No one wanted to operate on me because I was so young they were afraid the procedure would leave me worse off. But Dr. Mangus had a different view. He knew the transplant would save my life,” said Hodgen.
She is forever grateful.
Each Christmas she writes him a personal thank you letter.
“This is a man who is a husband and father. I think it’s important to acknowledge the sacrifice he makes to save the lives of others,” said Hodgen.
She’s also thankful to her family and co-workers. She is the oldest daughter of Bill and Sandy Hodgen and has twin sisters Lori Hodgen and Lindsey Shannon.
“I can’t say enough about our CEO Gerry Randall. He told me to take care of myself and I’d always have a job,” said Hodgen, who works as a web designer for the firm. Other co-workers – Gail Hayes, Dan Zumbiel, David Stanton, Joy Cropper and many others also supported her with hospital visits and fundraisers.
To maintain her health Hodgen has limited her diet to eight foods including turkey, eggs, and chicken but she recently re-introduced fruit.
“The first year after transplant was very hard. I was readmitted three or four times. I know I need to take care of myself,” said Hodgen. The last time she spent a night in the hospital was Feb. 2016.
“I’m 5’11 and at my worst I got down to 112 pounds. I looked emaciated. I’ve gained 50 pounds in the last two years,” said Hodgen. She hasn’t started running again but she has gradually gotten back to the gym and she spends much time doing one her favorite childhood activities – hanging out on the lake with her family.
“Other than a big scar on my belly, I feel normal again. I have a bunch of different specialists at IU health to manage my care but I’ve graduated from going every week to every month for labs,” said Hodgen. “It’s been a bittersweet graduation – I’ve gone from knowing so many people in the hospital to now only seeing a few. It’s a good thing.”