Thank you, Cheryl, for sharing your journey with us. We are sending you all of our love and support.
In November of 1992 I found out that I needed my gallbladder removed. I had it scheduled at the local hospital. The surgery itself was laparoscopic and was supposed to only take two hours, so I and my family were told. Four hours later, my family was told that there were some issues but nothing to worry about and I was told the same story. I wasn't to be released until I had a bowel movement and was walking on my own. Through extreme pain I was forcing myself to walk around the nurses station.
Once at home, mind you only a few days have passed, I was in still severe pain, discomfort along with NO appetite, and experiencing weakness. My grandmother, God rest her soul, had come to see how I was and bring me flowers. She looked at me with fear in her eyes. My grandmother said right off, "She needs to get to the ER immediately, something isn't right!!". So my mother, who was staying with me during my recovery, whisked my eleven and a half year old son, me and essentials and headed to the Emergency Room. My surgeon was there that day and came to me. When he looked at me he looked scared but went on to say "We need to open you up and see what is happening inside of your abdomen." So off we went.
I was under the knife again. Then I remembered bits and pieces, "She has holes in her bile duct but I can't find them". "We're requesting a bed at U of M". Actually U of M was the one demanding that I be rushed there from what some nurses passed along to my family. I remember my dad sitting next to me while I was in and out of consciousness but they kept me out mostly. Then a priest was in my room and my husband asked him to leave because "She's not going to die!!!!!" Next thing I knew I was rushed to U of M. I was still sedated heavily and kept on strong pain medication while they stabilized me over night. My new GI physician, Dr Raper, had come in the next morning with the news of my situation. Pretty much I was doomed. I asked him about the holes in my bile duct and how it's to be fixed, and how long all the tubes will be in me?? He looks at me sadly and shook his head and said, "Your bile duct doesn't have holes in it. It was completely severed during the original surgery and a two hour surgery took four hours because he couldn't find the end to repair it. It's like a rubber band reaction. I don't understand why you weren't told the truth but this is what will happen next." Then he proceeded to draw me a picture of exactly what he has to do to save my life.
I had many visits from our church and my fathers employer. My best friend was there every day, all day, especially when my husband couldn't be. So, I had to have drainage tubes in my abdomen and a drainage tube that had to stay in 4 months so my organs could heal from the acidity of the bile damage to the organs in my abdomen. My surgeries were not done; I wasn't in the clear. I had to prepare for my reconstructive surgery in March of 93. In between this time I was back and forth to Howell where I lived to U of M in Ann Arbor because the drainage tube in my liver through my ribcage was constantly trying to come out. That was fun! U of M is still a second home to me.
Next came my reconstructive surgery in March, a ten hour surgery which I can only imagine how tedious and daunting for those performing it while my family waited in the waiting room. My best friend walked me down to surgery and was there when they wheeled me out. I miss her so. That's another reason for my depression that I may explain later. Anyway, my doctor sat in my room with me later when I was conscious enough and told me exactly what I was to expect. First he stated that if I survived the next five years that I might be able to try to get pregnant, but he's not sure my body would carry full term. Second, the trauma to my body had caused it to age at least ten years and I WILL FOR SURE DEVELOP HEALTH PROBLEMS earlier than expected. Arthritis, for one and any issues that come with aging along with unknown conditions that at that time could not be determined, of course, and that I wasn't to over do it due to the size of the scar (38 staples). I will develop adhesions and alot of scar tissue. You see they had to open me up to perform this surgery. I have a scar straight across my abdomen. The scar literally looks like I was cut in half. Of course you're thinking "Well, she definitely has a lawsuit!!!!" Well, I had a lawyer that got paid off by the other "screw-up" surgeon is my guess because they both disappeared. Good thing I have all my medical records.
It has been a long, long, long time since I've really told my story but it really hasn't ended because my condition never really was great after. I have been miserable ever since because when you have any surgery on your intestinal tract you're going to have issues. Mine just got worse and worse until my GP was finally diagnosed to explain why I had been in the ER from 2007-2012 due to misdiagnosis and stress triggering episodes so often. I had been extremely sick with pneumonia in 2011 when I made an error at work, a fixable error, but my attendance caused them to decide to terminate me. They tried to deny me unemployment but because they knew I was sick and the judge didn't think my termination was fairly executed, he granted unemployment. Thankfully and quickly.
I started having anxiety attacks in 1999-2000, during my divorce. Also, during this time my best friend was killed in an accident, she went out one night in August of 2000 and had been drinking so she pulled over on the side of the expressway and witnesses stated her flashers were on but still a Stockhaller semi driver had fallen asleep at the wheel and smashed into her car and ran it into an overpass. He fled the seen and she was killed immediately. For the longest time I blamed myself for not being with her that night. Many reasons to be unhappy but I do try to be happy. My father was diagnosed with prostate cancer two years ago. Three winters ago he had frozen lung which along with the stress of taking care of my mother with Alzheimer's, doctors say caused the cancer. He went through the treatments like a trooper and I would stay with mom so it lessened the stress on both of us. That's when we decided it would be best if I just moved into their house because it is way too big for just the two of them and my dad and I decided we can help each other. I have no income now but we're frugal and spend wisely.
I've been fighting for my SSDI since November of 2011. Of course I've been denied, but I am not giving up, I wasn't properly diagnosed then. I was finally diagnosed with Gastroparesis in 2014 after many different tests, ending with the GES. I worked all of those years even after what I had gone through. My body, though, has decided enough is enough. Thank you for giving me the opportunity to get my story out. I know so many others have been through alot also and I hope this will help get us the research needed for a cure. I aa nauseated daily at 49 years old. As we spread awareness and get closer to a cure may our younger ones have a chance to fulfill their goals in life