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November 19, 2018

Fierce Flyer - Emma on TPN and Big Adventures

BY: EMMA TILLMAN

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In 2011, I got really sick, my gastrointestinal system stopped working normally and anytime I ate or drank anything I would vomit, so for the past 7 and a half years I have received the majority of my nutrition through a special intravenous (IV) line in my chest. This IV nutrition is called total parenteral nutrition (TPN).

Prior to getting sick, I had been an avid, yet average, recreational runner. After recovering from the initial shock of being sick, I started to get back to real life and running. I had to start at the very beginning. When I first started running again, I couldn't even walk a mile without stopping to sit down and rest. Gradually I built up my fitness and in 2014, I ran two marathons (San Francisco and St. Jude in Memphis) with the assistance of IV fluids during the race. From 2014-18 I have had a lot of ups and downs with my health and running, but no matter how bad I felt I always tried to stay in the running game. It is hard to keep doing it, but I think it is even harder to get back in shape after stopping. I often tell people that the it's okay to have a sick day every once in a while, but if you take a sick day and stay home from work, stay in bed, don't exercise, etc..., then then next day when you don't feel any better, it is really hard to make yourself do life and you can easily fall into a downward spiral of living the sick life. I have always been scared of this happening to me. 

A few years ago, I was playing around on Instagram and was searching hashtags. I searched TPN, EN (enteral nutrition), tube feeding, IV nutrition, and other similar terms trying to get a sense of what things would come-up. Now with social media so prevalent, whenever there is something new we go to the internet to read about it. As I was searching, I was thinking about the patient or parent of a child new to TPN trying to find out what a life on TPN would be like. I was greatly disappointed that all of the images that I found tagged were “sick” pictures. For example, a woman in the hospital bed with TPN, a boy lying on a couch looking sick, etc… I decided that I was going to try to flood social media with pictures of me doing normal things (many times this includes running). Anytime I post a picture on social media, I tag it with #tpnstrong. I want to show people new to TPN that you can live a full life and thrive on TPN

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During the past 7 years, I have had multiple hospitalizations, surgeries, doctor appointments, infusion clinic visits, weekly lab draws, and of course daily infusions of TPN. Throughout this time, I completed my PhD, worked full time and continued to run, but also I have continued to search for something that would make me better and improve my quality of life. Most recently in April of 2018 I had a sub-total gastrectomy with intestinal revision. After this procedure, I had some marked improvement. I was finally able to eat without vomiting, but I had a gastrostomy tube (G-tube) in my remnant stomach (the part that was not connected to my esophagus) that continuously drained bile and required me to have a drainage bag attached to me ~22 hours per day. You may have noticed me sporting an awesome fanny pack at Big Birdcamp. This was not just a fashion statement, but a necessary accessory to hold my drainage bag. This continuous drainage also led to dehydration and I still required IV hydration. I told my doctors that this was not a permanent solution, so after months of watching and waiting with no change, in September of this year I had a total gastrectomy (removal of my stomach). Prior to surgery I was running with the goal of being in good shape prior to surgery. This was truly my goal! At camp this summer typically the first conversations when meeting new friends were, 1. Where are you from? 2. What are you training for? I told everyone I met, "I am training to be in the best shape possible in order to help my body recover from major surgery."

The surgery went well. I spent five days in the hospital and was discharged with a surgical drain. Post-operative I took 2 weeks off from running and during this time I was getting all of my nutrition via my IV as I could not eat anything except for minimal sips of water and small amounts of hard candy or Popsicles for 5 weeks! Slowly I started running again. I had several friends that were planning to do by hometown Indianapolis Monumental Marathon or Half marathon. I actually was hosting several out-of-town birds at my house, and planning meet-ups, so I had an intense fear of missing out. About 3 weeks prior to the race I decided to sign up for the half marathon. I had only been running about 20 miles per week and my longest run post-surgery was only 8 miles, but for the first time in over 7 years, I was able to tolerate food and eat like a normal person. 

Because my training was sporadic during the past few months, I didn't really know what to expect or what to try to do for the race. One of my friends that I typically run my long runs with had told me her PR was 2 hr 15 min on a hilly course and we typically run our long runs at ~ 10:15-10:30 min/mile pace. I knew she could have a huge PR, so I offered to pace her for the first 10 or so miles to get her a PR. On the day of the race, I ran the first 10 miles with my friend and I was feeling really good, so I picked-up the pace on the last 3 miles. My friend finished with an 8 min PR and I finished in 2 hr 6 min and my previous PR was 2 hr 4 min. I felt really good about this with it only being 8 weeks after a major surgery and sub-optimal training. 

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This recent race was a huge boost of confidence for me and fueling with food has me running faster than I've run in years. So what is next for me? Aside from my interest in running, I am a scientist and pharmacist and I have a strong interest in nutrition. I am fascinated with the body's response to nutrition and the lack of nutrition and biochemical processes that can be altered. I believe during the seven years that I received my nutrition via an IV infusion over 10-12 hours overnight and received little to no nutrition during the remaining part of the day, my body metabolism adapted in a way that I need far fewer calories for daily activities. This hypothesis is supported by results from a recent indirect calorimetry study that calculated my basic metabolic rate. I believe this change in metabolism might have a distinct advantage especially when it comes to long distance running where optimal fueling can make or break the day. I have decided that I want to push my body to a new limit, so my goal race this spring will be the Big Buffalo 50 in Memphis, TN (my former home). In preparation for that race, I am planning to do a local half marathon next month where I will shoot for a PR, and the Mercedes Marathon in Birmingham, AL. My marathon PR was from several years ago, so even doing this as a training run, I am hopeful that I can set a PR. In addition to my personal races I have scheduled, I have convinced my winning Women's Ultra Ragnar TN Indiana Volee team that conquered Chatanogga to Nashville last year to tackle Ragnar Midwest! In May, Becca Downs, Rachel Zajac, Jordan Callison, Kaylee Blackman, and Jessa Victor will join me for a fun 200 mile run from Chicago to Madison. 

I have a lot of big adventures planed and I am super excited to continue my training and see what my body will let me do!

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