I was diagnosed in 1988 with primary sclerosing colangitis, a disease of the bile ducts of the liver. In 2005 I was placed on a liver transplant list. I was transplanted TWICE in two days with cadaver livers because the first one they put in was too large for my body. I was saved by Saint Louis University Hospital, the same as I was almost killed. I have very mixed emotions about the ordeal. I spent 6 months as an in patient. I was having a outpatient procedure done a year later and stopped breathing in ICU - recovery. Again, escaping death by minutes, and this time almost 7 months.
I am a single father of 3 beautiful, independent and smart girls. I raised the oldest for 14 years until my health led them to live with their mom, or my oldest on her own. I have a 10 year old who keeps me and my spirits high. I thank god everyday for what I have, and what I have to offer. My life is completely different, and some for the good and some, not much so. I am lucky to be alive and want everyone to know, DON'T YOU DARE GIVE UP. EVER.
UPDATE in June of 2007 I met the love of my life, married her and adopted her three year old daughter. my middle daughter gave birth on 10/06/2011 to my first GRANDSON! My oldest is 21 this month and three months along. My youngest is 11 in less than a month 12. I have a stepson who is 14. 5 kids, bio, and step from 21 to 3. I'm growing tired and becoming angry about my situation. What we thought for years was simple bowel obstructions, I have done some research and found I have Chronic Inflammatory Pseudo-Obstruction. No real obstruction but google it or try medpage or webmd and you can read what it does. I suffered for years with this. A local hospital, I trained as an EMT at, and was born actually uninvited me to ever return to the ER because they labeled me a pain drug seeker. I am under the care of a pain clinic, but the pain would sometimes exceed what my home meds could provide. A simple shot or two of only 1mg of DILAUDID would set me straight and sometimes some fluids from dehydration. I realize I sound like an enigma, but I believe the Ulcerative Colitis, Primary Sclerosing Colangitis, and this "CIPO", are all related. If a test can be found and administered early, it could save the colon, maybe the liver if treated in younger, healthier patients. I'm not a doctor, or a nurse, and I am letting you know that now, because this is strictly my OPINION, and information Imderived from countless searches and study. Thank you for reading this very important update!
Apr 16, 2010
Oct 27, 2011