My life was never expected to be perfect because perfection does not exist. What was expected of me was for me to graduate high school making A or Bs, and go to college on a swimming or basketball scholarships. What I did not expect was to spending time during my high school years living in a bubble, accused of being crazy and at times being unable to walk. But these things were part of the journey that life had laid before me.
When I was in the 8th grade I went on a church trip. I sang the gospel of Jesus and witnessed to complete strangers on the beach. I came back with a souvenir – blisters on my ankles. That summer, I spent multiple hours in and out of dermatologists’ offices trying to find the source of what exactly these little blisters that traveled up my body and turned into quarter inch deep ulcers the size of quarters were. They covered me head to toe including my scalp and breast. The blisters were quickly followed by fevers spiking up to 105 degrees for days. Blood tests were so much in abundance that I started being able to direct the phlebologist on exactly what veins were suitable for attack.
Significant weight loss followed the surgeries accompanied by pain in my side that felt like a sharp, piercing, hot knife like pain. I had started falling down when I would walk across the room unable to support my own body weight due to atrophying muscles. My body covered in sores and my constant itching made them worse. At this point, I had spent more than a few weeks in the hospital being poked and prodded by a bunch of doctors who looked at me as their lab rat. It was suggested that I could have AIDs, diabetes, muscular dystrophy, and lupus. One doctor even suggested a mental disorder that was causing me to manifest symptoms of a disease.
Time continued to pass and I started to lose the ability to reason, think clearly and understand simple things. Maybe I was crazy? Maybe I was making all of this illness up due to jealousy of having a brother who had just been accepted to Stanford University? Doctors continued to review my case; either being unable to diagnose or passing on having an opinion.
My senior year of high school came and I came down with pneumonia or so my primary care thought. After my ex-rays came back negative, I was sent to see a Gastroenterologist to diagnose what this new thing was that was making me cough from the fluid in my lungs. The gastro evaluated me and sent me on to the liver disease team at Emory Hospital where I met Dr. Stieber. I was initially scheduled to see another doctor, but when the doctor came in it was my future surgeon. My mother, being frustrated, snapped at him and told him that he was not the doctor that was assigned to my case. He snapped back that he had experience in cases like this and he was the best doctor for my chance of survival. Within a week, I was diagnosed with having liver adenomas (tumors) and I was hemorrhaging to death (the sharp pain) and if I did not have a liver transplant soon then I would die. How is that for a Friday afternoon chat?
Within a few weeks I was being evaluated for a liver transplant and upon completion of this process, my case would go before a panel for a 100% ”yes” vote or I would be left to die. On the day of voting, a doctor came in and told me that he was going to vote ”no” because they had no medical reason for why I had developed the tumors and they needed to study me to come up with an alternate therapy. While I would not repeat the exact slang I used as my response, I will say that I questioned his decision making skills and asked him if he could look at me in the eye and tell me he knew the solution for me to live, but he denied me because he wanted to study me (I need to note here that he was a psychiatrist). Needless to say, I don’t think he was use to 17 year old girls using such strong words to question him and he tailed it out of there without much of an answer. When my case went before the panel and voting was had, my future surgeon got his attention by pulling him across the table by his tie and asking him what he would want someone to do with his daughter.
18 years later, I stand here. I have a surgeon who is a bit like a dad at time and a friend at others. I have a picture of my donor in my cell phone and love in my heart for a man I won’t know until I get to heaven. My life is blessed. While I would not have chosen it for myself, the Universe really does know what is best for us.
Amy
Georgia
Submitted 6-14-11
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Amy, Thanks for sharing your story about your struggle in finding a diagnosis for your liver disease. Finding a doctor that believes in you and gets you on the right track is a blessing. God Bless your donor and his family.
Mo
Amy, what a harrowing ordeal you bravely trudged through! You’ve got an unimaginably huge reservoir of strength within you and have managed to find meaning in a nightmarish brush with death. Your story can, and will, undoubtedly hearten others who are embattled in lonely, life-and-death struggles. Too, you’ve brought badly needed attention to the desperate call for organ donors out there. Thank you, and I wish you all the happiness and health life has to offer.
Thank you so much. I was blessed to be able to go through it! I could not have wished for anything more amazing to happen to me
Amazing! What courage and strength you have. I wish more people would hear your story because you benefited from organ donation. When people are grieving its hard for them to make decisions regarding organ donation. One lost life can save another…Go on and live a full life!!