Hello... this I guess will be my first attempt to actually create a blog...hmmm. I am at a loss as to what to write about. What would I want to say to others that I don't mind being viewed for others to see and know about me.
I was born as a identical twin, we were born on November 8, 1958. My other half died on Dec. 24, 1958. Sooo.... I didn't get to grow up with her but I felt like she was and is with me every day of my life. I have heard various stories on how she died and really don't know the truth on how she died except that she did but I do know how it affected my mom and how I reminded my mom daily and constantly of my other half. Mom had issues with me since day one of my birth and did till her last breath, sadly. My older sister by a year, 1 month and 3 days older than me lived daily wondering if I was going to be alive by the time my mom was done rampaging. She daily tried to protect me at home and at school ....she was my protector in my life....though she feels like she was never successful in protecting her lil' sis.
When I was twenty-two I was raped and had a son as a result of it...I chose to keep him and not get an abortion or adopt him out. For me I couldn't live knowing I had a child out in this world and not knowing how he was or if he was happy and safe. So I was a single mom all of his life. My son was born with a soft cleft palate and had to have numerous surgeries to correct his birth defect.
I didn't have any support from family to help get through those times. I saw my parents maybe once or twice a year at that time...depending on if my mom was speaking to me. On those visits it was very stressful and I always kind of went into a panic and dreaded the visit. I always walked on eggshells with my mom and never knew when she was going to explode or become another person. My dad was supportive of me but was never really able to step up to the plate in protecting me but I sometimes think he really was unaware of how often the abuse was going on. I know he knew of some but he was mostly gone to work or on business training trips and when he was home he was always working on something around the property or gardening or something. I loved my dad and idolized him but as I got older I realized he wasn't really there for me and I started getting angry and asking myself why wasn't he able to help me with mom....I guess as we get older we come to an understanding that our parents are just people and fallible. They come with their own baggage even when they become parents and have their own demons to deal with from their childhoods. They aren't perfect....and though I went through hell, my mom did love me as twisted as that sounds. She was a tortured lost soul; inside somewhere was a beautiful soul.
In my early thirty's, actually I was 31 when I found out that I was going to need a liver transplant. I had fallen on the job and had been seeing a chiropractor for about a year. One day my chiropractor asked me if he could exam me more indept by feeling my abdomen and other areas since he was unable to resolve the pain in the upper right quadrant area of my back. So I said go ahead....while he was doing this he was saying hmmm or would raise his eyebrows. Long story short on that....he said wow...your liver is very enlarged...my liver extended all the way down to my groin and went from rib cage to rib cage....so he referred me to a internal medicine specialist named Dr. Kusum Stokes who sent me to get an ultra sound and they discovered I had nodules on my liver then I had a cat scan that show more detail. They determined I had tumors all over my liver so then she ordered a liver biopsy and during that procedure they had to stop the exam because they hit a nerve in my diaphragm. So I went to the follow-up visit and she said ummm you are an alcoholic and drug addict and I won't treat you till you get professional counseling and help. I was flabbergasted and told her WHAT??? I tried to tell her that I wasn't either one of those but she wouldn't listen and told me I was in denial...to which I told her ....ask anyone that knows me and they would tell her I was neither of those. So my case sat for about two years but I was still in pain and it was steadily getting worse. So my primary doctor sent me to California Pacific in San Francisco ...at the time I was living in Eureka, Ca. I was seen by a panel of specialists and after three days of tests I saw a liver specialist named Dr. Joanne Imperial. I had a friend from home come with me and both of us were very unprepared for what we were about to hear. I was told that what I had was a silent killer. She told us that worldwide the cases that existed I could count on my two hands. So my case was worldwide rare and the other cases that were known were after the fact since those people died before it was known what they had until after..... She also told us that I would die unless I had a liver transplant...the panel of doctors that I had seen had a conference about me and discussed my case. They thought that I could have half of my liver removed...but I would still have half a liver completely covered with tumors...they discussed having 3/4s of my liver removed...still the remaining part of my liver would still be covered. She said I could live with 90% of my liver removed but in my case the 10% remaining would still be completely covered with tumors so my only alternative was to have a liver transplant. So I was put on the transplant list. I knew about this for 6 ½ years and was on the active transplant for 4 ½ years. I was given a beeper and told to come to the hospital when I got the phone call. During that time I was a outpatient at California Pacific. Stanford University Medical Center didn't have a adult liver transplant program at the time. So it was decided that the transplant team at California Pacific would sent half their team to Stanford to establish a new adult liver transplant program. They gave me the option to either stay or go to with Stanford's new transplant team. Well living in Humboldt County I was not new to experiencing earth quakes being we had them quite frequently, but all I could think of was if a quake hit San Francisco it would be bad...lol. During this time when the batteries were starting to die on the beeper or if I got a wrong number call it would send me into a panic, I was constantly on edge waiting and steadily getting feeling physically drained and had pain and pressure on my abdomen. I was told after my transplant that they had determined that I was born with the tumors on my liver, that they were benign non-cancerous. But what happened in those 4 ½ years was that the tumors kept growing and eventually I had no viable liver left because the tumors completely strangulated the in and out flow of my liver ….the only thing keeping me alive was on tiny little vein. They discovered this after they had put me in the hospital for a week to upgrade my status on UNOS's waiting list. But I was a square peg trying to fit into a round hole and it just wasn’t going to happen. The reason my case was considered a silent killer is because when a person with this has a liver function test it will always be normal. A main requirement to be considered for a donor transplanted liver is that your liver function tests are abnormal but mine were always going to be normal since it was a silent killer. My liver weighed about 10 lbs. and pieces of it were sent worldwide so it could be studied to gain more knowledge about this deadly silent killer. I had my liver transplant on May 7, 1998. Dr. Emmit O’Keefe was my doctor. He has since then died due to having cancer, sadly to say. I really liked him; he was a world renowned doctor and very compassionate. I am 17 years out post transplant and on May 7th of this year I have had 17 extra years on this earth…
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