Multi-Visceral Transplant (Stomach, Liver, Spleen, Pancreas, Small and large Intestine) By Bobbiej

I first began to have digestive troubles when I was about 13 and began refluxing, and occasionally vomiting, foods and experiencing acid. A manometry showed that my lower esophageal sphincter was loose and thus allowing food and acid to reflux back up into my esophagus. In August 1995, I had surgery to place a full Nissen fundoplication to treat my diagnosis of GERD. I did okay with that for awhile except for belching more often and sometimes at embarrassing times. However, soon after I started college, in 2000, I started to have trouble with swallowing that gradually got worse such that it took me longer and longer and became more difficult to eat each meal.

 

The cause was eventually discovered to be a build up scar tissue from my open surgery for the Nissen fundoplication. When the scar tissue was removed in a surgery in the summer of 2002, the Nissen fundoplication was also taken down. I soon began to experience new problems along with the reflux returning. I was officially diagnosed with idiopathic gastroparesis later that year while still in college, and shortly after, due to trouble with keeping enough food down from nausea, reflux, and vomiting and thus losing weight due to severe malnutrition, I had to become completely dependent on j-tube feedings in order to bypass the stomach because the other available medications and treatments did not help me to be able to eat enough orally. During this time, I had a gastric stimulator implanted to see if it would help with my nausea and vomiting, but it did not help me.

 

I was able to obtain my bachelors with a double major in French and the Classics thanks to the j-tube feedings. However, as my condition worsened, I had to stop my attempt to get a Master’s degree. and I eventually came to rely totally on TPN, or intravenous nutrition, which eventually ruined my liver as my liver turned out to be extremely sensitive to it such that my calories had to be kept low to try and prevent or slow any damage. I was told I could possibly die as a result of my condition, but fortunately, the doctors who were constantly seeing me in the hospital for my multiple line infections brought up the possibility of a small bowel and liver transplant.

 

Then when I went down to Miami, FL and met with the transplant team at the University of Miami/Jackson Memorial Hospital, I learned that I would be receiving a new stomach, liver, spleen, pancreas, small and large intestine and would be in the talented hands of Dr. Andreas Tzakis. I waited for about three months until I received the call that resulted in me receiving the best gift I could ever imagine right on the day of my 25th birthday, October 6, 2005, as if God was putting his blessing on it and telling me even then that I would make it.

 

I had a difficult recovery involving an almost four month stay in the ICU due to a lung collapsing, and it took some physical therapy to get the strength to walk again on my own, but all of it was certainly worth it and I had wonderful support from the doctors and nurses who helped me encouraging me with their kindness. I was finally able to eat orally again after not doing so for several years. I feel blessed to have received this wonderful gift, and my life has been dramatically changed by it. Although I have not yet been able to return to work or to school, I have found new goals for myself and become involved in support groups online and volunteered in ways that have allowed me to find good and hope in each and every moment. I thank God, my donor family, my doctors, nurses, family, and so many others daily, for without them, I would not be who I am and where I am today. This experience has taught me how important human connections are, and how much more beautiful the world becomes when these are made and cultivated. My hope faltered once, but not again.

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Comments

  • Your story gives me hope. I have gastrophersis, and dismotility; this all started for me in the middle of my pregnancy last year. Since delivery I've had a total colectomy, then later ileostomy, and bowels have shut down completely, I swell each and every day more and more in my abdomen. No one knows the cause. I'm now on TPN finally.. I have checked into JMH, but also Georgetown, and CC, and Duke, but Duke only do small bowel and liver and they're in my home state... I was wondering what all it involves for screening to determine eligibility for transplant? How are you doing now? I hope you have had a Merry Christmas!:) xx
  • JMH is the best kept secret in America! 

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