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Starving to death
Posted on April 24 2015
By: Carissa Haston
It was about midnight on March 12, 2006 when my life changed forever. I was in the University of Pittsburgh Hospital waiting for a five organ transplant due to gastroparesis and chronic intestinal pseudo-obstruction, two gastrointestinal conditions which lead to paralysis of the GI tract. I had not eaten in 12 years. I relied on nutrition through IV lines (known as TPN), but due to so many near-fatal blood infections from the central lines, I had lost most of my veins and they were losing the ability to feed me anymore. My liver was failing as a complication of TPN.
I had been waiting 13 months for a transplant of my stomach, small bowel, pancreas, liver, and duodenum. Just that day, I had been admitted to UPMC with fluctuating blood pressure. I was a scrawny 62 pounds. I had days, if not just hours, left to live.
During my long wait, I experienced many setbacks and came close to death on many occasions. While I needed to be as healthy as possible for the transplant, I kept developing problems that decreased my chances of making it out of the OR or being able to recover.
When things looked their bleakest, doctors walked into my hospital room to inform me that organs had finally become available. After three previous false alarms, I was skeptical and tried not to get my hopes up too high.
I had become so weak during the long wait that my doctor was hesitant to even operate. He did not think I would make it out of the OR, but also realized that this may be my last chance. The organs looked like a perfect match. The long-anticipated, 17 hour life saving operation was started around 8:30 AM on March 13, 2006.
Not only did I survive the operation, but I recovered amazingly well. My family told me that they could tell my body was so much better as soon as I was wheeled into the transplant ICU. My face had color. My fingernails looked healthier. My body was working again very quickly. Just hours before, my odds of survival were slim. While still facing the potential of rejection, bleeds, infections, and other serious complications, I had beaten the odds and exceeded expectations simply by surviving the operation.
In less than a year I went from being bedbound, unable to drive, walk well, or care for myself to being fully independent. About nine months later, I was driving and lived in Pittsburgh alone for five months for follow up care. About a year and a half later, I returned to my work as voluntary CEO of the non-profit I founded in 2001 for gastroparesis, G-PACT, and began volunteering at my church four days a week. I was able to return to normal social life activities.
While I still battle complications from 21 years of illness and additional health conditions including mitochondrial disease (a genetic condition), dysautonomia, osteoporosis, myelin sheath loss in my brain, and low vision of unknown cause, I have lived nine years longer than anyone expected and been able to experience so many things I never would have. I have been able to see the growth and impact G-PACT is making in the world of paralytic conditions of the GI tract and seen so many lives changed through our work.
April is National Donate Life Month. I can't express the importance of being an organ donor. There is such a shortage of organs and so many die waiting. It's especially difficult for children. Because parents are not prepared for the tragic loss of a child, the thought of organ donation is overwhelming. I needed child-sized organs which is one reason it took so long for mine to become available.
No one wants anyone else to have to die in order for them to live. It's a struggle for recipients. While we are grateful for the second chance, we mourn for the families of those who have suffered a major loss. We cherish the incredible gift of life and are so grateful for the unselfish act of giving during a time of great mourning.
I encourage everyone to register to become an organ donor and help save more lives. I encourage parents to consider this too if they experience the loss of their child. The need is so great. If not for my donor family on that night, I would not be here writing this today and not able to use my extra years to impact many lives. One donor can save up to seven lives, and change many others through tissue donation. Recipients can then move on and impact the lives of hundreds or thousands. The cycle continues. Please check out www.unos.org for more information.
More information on G-PACT and Digestive Tract Paralysis can be accessed at www.g-pact.org and www.facebook.com/gpact.