The Beginning (pg1)

Our most basic instinct is not for survival but for family.  Most of us would give our own life for the survival of a family member, yet we lead our daily life too often as if we take our family for granted.  ~ (Paul Pearshall)


This blog is dedicated to all the Family and Friends that have been affected and effected by Liver Disease of any kind. This is my story, our story of  how we learned  what the disease was and the journey we embarked on for my father's cure...

This blog is written from my perspective as the Live Living Donor volunteer. I am donating a piece of my liver to my father,  Who am I?  I am friend, a sister, a mother, a cousin, a comedian by nature, a semi optimist mostly realist, an observer, a babbler, a writer, a dreamer and  Greg's daughter. I am also determined to give a voice to those that are afraid to use theirs because of the stigma of "liver disease". I hope that everyone who reads this gets a little educated, laughs a little and know that if you are in this situation there others like you in the world.

My father has been diagnosed  with Hepatopulmonary syndrome: it is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease. Dyspnea and hypoxemia are worse in the upright position. Which is why my Dad is always laying down these days, he can barely make it to the door with out it seeming he ran 15 miles.  He also has NASH compounded with the a fore mentioned. Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly. We were informed that my Dad may have had this condition for years and we/he never knew it.
Now that I have given you the condensed version of his disease, this is where we begin.  First let me say I am astonished as to how ignorant we all can be about things until they happen to you, whats interesting is that when you say liver disease everyone always assumes you are a drinker or were an alcoholic and as you just read that is not always the case. We found out my father had this condition after he was found to have a heart condition and led him to have a double bi-pass in June 2009, after his Bi-Pass he had many complications and almost did not survive, which was very frightening to say the least. We were advised that he may have a liver disease of sorts but they never really elaborated, there were whispers than that he would need a liver transplant and I already said I would do what ever was needed. Never really knowing what was about to come. Obviously my father had continued his doctors appointments and on May 19th 2010 it was confirmed that he would need a liver transplant because his breathing would get worse and at the time they advised him to stay on Oxygen for 24/7.  As scary as it was to hear this, we were confident that he would get a cadaver donor, as that was the impression we were all under. We also learned that we live in Region 1 for Organ Transplantations, meaning my father's disease would need a high  MELD score (Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease) to get onto the national donor list and the supply does not meet the demand for organs. They said might be best to move to a state like Florida to get a faster transplant....ya ok, cause that's what you want to hear while your trying to process everything else.  Needless to say his  score was a 22 which would get him there,and because his blood type is B, he was consider rare and his wait for a cadaver donor would not be to long. Well that was what were told and felt confident about. To make a long story short we  learned in August that his insurance would not cover a cadaver donor they would only pay for a live liver donor. Now seriously I could on and on about this bureaucratic bullshit and since I do not work or have never been schooled in insurance bullshit it has only reinforced why I think our health care system sucks but that's another blog entirely.  So after lengthy discussions and semi-arguments it was decided that I would volunteer to see if I was a match. In liver transplantation it is blood to blood match not tissue match, so I already knew I was a blood match for my Dad....and so the journey begins....

(This was my thoughts on May 19th when my father told me he needed the transplant)
Perspective: When the risk of losing the one solid person in your life has been increased by statistics and diagnosis's you realize that no self education, conversations, tears, or written fluffy words from others can ease the indelible fear that you are standing in, it is action and sometimes someone to take your hand that is necessary to help you push to the other side. I am truly blessed to have family & some amazing friends that are willing to walk the line for me..... for us.......