The Culprit

My original cause for a diseased liver and my need for transplant came from an autoimmune disorder. It lay dormant in the background for a number of years appearing only in a form of mystery as to why I didn't respond to medications the way others did, or why something else was going on that the doctor could not explain. I was not a text book patient, and often left doctors scratching their heads. But, there was no reason for alarm at that time, so no more research was done.

Then, beginning in the early 90s, and living in a small town, I began to attend the local blood drives to donate blood. Over the next couple years, I would try to donate three times, and each time, received a rejection letter. My blood could not be used due to high ALT levels (which reflects the health of the liver), while offering a list of possible causes, which included things like Tylenol, sinus medications, which were strong possibilities. Of course intravenous drugs and alcohol abuse were listed, along with a host of other sources that did not pertain to me. The third letter added that I please not donate again until checking with my doctor regarding this issue.

I checked with my doctor, bringing him the letter, and it was decided that it must be the over-the-counter medicines I'd taken for sinus headaches. I brushed it aside and went back to life as usual.

Then in 1996, I was 37 years old with one child in high school, one is junior high and one in grade school. I worked part time for the county, worked with the youth at church, did a little substituting at the school, as well as keeping up with the events of our children. I was exhausted, and would often lie down on the couch to rest in the afternoons. However, I would jump up if anyone came to the door, lest they think I was lazy. :) 

"So this is what 40 feels like!" I would say to myself.

I truly believed my exhaustion was simply from running hither and dither from one thing to the other, along with the fact I was nearing "middle age". The big 4-0! Around that same time, the insurance coverage we had offered free preventative care. So my husband set up appointments for us both.

He passed with flying colors. 

Me?  Not so much.

I received a phone call one afternoon from the doctor's office. My nurse said the lab work was a bit "off", and they wanted to make sure that it wasn't a mistake, and asked for me to come in the next day for more labs.

The second test was same as the first. Something was wrong. Research began.

The first consideration was Leukemia, and they set me up for a spinal tap.

It was negative.

More studies were done, and I was eventually scheduled to have a liver biopsy done. It was there they learned why my lab work had been so bad. I had moderate to severe cirrhosis. Further study lead them to discover the cause of the damage to the liver, as well as answered a lot of other questions I'd had over the years. I was born with an auto immune disorder. The immune system designed to protect my body was malfunctioning, and with every minor infection I had, my immune system attacked everything, my own organs as well as the infection or virus.

Ordinarily, if liver damage is caused by an outside source, once the source is removed, the liver, the only regenerating organ, can heal itself. However, the source of attack for me was "me".

So in May of 1997, after discussing our new findings with a hepatologist, my husband and I drove home with the news that I would eventually require a liver transplant. No ifs, ands or buts. It was a guarantee. I could not survive without one. At this point, my doctor gave me only five years to survive on my own liver. We would later learn it would have been only four!