Wednesday, October 1, 2014
GP Fighter - Emma
A couple years back I read a fascinating research article about TPN that still to this day I often think about. Little did I know I would soon meet the one who put it together, hearing her speak not on behalf of this particular research, but her own recent diagnosis of gastroparesis and how she continues to not let obstacles get in her way.
Growing up, Emma Tillman, a clinical pharmacist who now lives and works in Tennessee, struggled with bouts of cyclic vomiting. This could go on for a day or so but then would often subside for weeks, sometimes months at a time. There were periods when these episodes increased, particularly around times of stress. While attending college she would need to receive IV fluids at times when things got bad. Then one day, the Sunday following Thanksgiving of 2011, the vomiting didn't stop. She quickly lost 30 pounds. Like most of us, Emma went through the ringer; of testing including labs, ultrasounds, CT scans, and the gastric emptying study (GES), which eventually led to her diagnosis of gastroparesis.
Because she already had a PICC line from the hydration infusions in the past, her team at Vanderbilt University Medical Center in Nashville decided to start her on total parental nutrition (TPN) for immediate IV nutrition while going trialing tube feeding (enteral nutrition). Unfortunately, the enteral feeds resulted in bad abdominal distension, even when the formula was diluted and set at a slow rate. So TPN it was, though she still had hopes it would eventually go away.
Emma shared it took her about a year to accept living life this way, with gastroparesis and the need for IV nutrition. She continued to tell herself, "I'm going to do this after I'm better." Now, she states, "it's a part of her and doesn't try to hide it, she's no longer bashful about her situation." The PICC line was eventually replaced with more permanent line, which after doing her research, was able to request where the exit site would be - underneath her arm so that she could continue wearing V-necks and bathing suits without being visible and access the dressing herself.
In 2008, prior to the severe gastroparesis, Emma had started running marathons. Her and a friend she trained with loved it so much they decided they wanted to run one in each of the 50 states. Between 2009-2010, they ran races in Alabama, Arkansas, Missouri, and South Dakota. When she became ill in 2011 the running of course had to stop. However, in February of 2013, Emma decided to start running again. She explained that "she might not win but she will finish." With the help of IV hydration she is able to get enough fluids in to make this happen. Not only does she have a whole different outlook on life, she continues to overcome obstacles. When I had the opportunity to meet her over the summer at the Managing Intestinal Failure conference, the following day she would go on to run the San Francisco Marathon and help raise money and awareness for home parental nutrition through the Oley Foundation. At this time $5,790 has been raised!
When asked what is especially challenging (beyond running marathons!), her answer was "learning how to navigate food in social settings." Most of us can definitely relate to this scenario, being that food is such a part of society when socializing. She feels better about this these days and says it's not ideal but she makes it work. Emma says she can eat small amounts she still throws up, though retains some of the food.
Something else you should know about Emma - back in 2008 (yes, strange enough prior to herself on TPN) she put together a fascinating research, studying the use of fish oil as treatment for parental nutrition (TPN) associated liver disease (PALND). The TPN formulas available in the U.S. contain mostly soy lipids while outside the country there is Omegaven, a formula with omega 3 fatty acids from fish oil. You can learn more about the research for alternative lipids for treating liver disease at the Oley site here. At this time, it is difficult to get a hold of in the U.S. but possible. Talk to your physician and infusion company to learn more.
Emma continues her work on the faculty at the University of Tennessee Health Science Center. I want to wish her a happy birthday and congratulations on running 35 miles for her 35th! She is most certainly a GP fighter who has inspired me and I hope does the same for you.