Learning I was sick, from a young age.

Like my dad stated, we learned about my liver being sick when I was about 10 years old.  It was the beginning of the summer before I went into 5th grade, and one of my close friends at the time had come down with mono.  My family had all noticed that I'd been looking a little "yellow" (aka jaundice), so they set up an appointment with my pediatrician to get me tested to see if I had come down with mono as well.

That was the first time I'd ever had a blood test.  The thought of that kinda scared me, but the lady drawing my blood told me I was braver than some grown men that came in there.   The results came back showing that I didn't have mono, but I was still really jaundice.  This was worrisome to my doctor, and he decided to test me for every type of hepatitis.  This went on for the whole summer, and many tests later, and my doctor decided it was time to send me to a specialist.

This was my first encounter with Dr. Barclay.  He was a stern, straight to the point man.  He told my parents that he wanted to do a biopsy on my liver, to figure out the diagnosis of what exactly was wrong with my liver.  He had an idea at what he thought it might be, but he wanted to confirm it with the biopsy.  So, I came home from school, and my mom sat me down and explained to me what he'd said, and then explained to me what a biopsy was.  Think about how scary that would be, to hear as a young kid, that you are going to have a long needle stuck into your side, so they can take a piece of your liver tissue to run tests on it.  I was TERRIFIED.

Going into the hospital with my parents the morning of the procedure, I didn't know what to think.  The first thing they had me do was put on a hospital gown and get into the hospital bed (which in the children's wing, somewhat resembled a giant crib).  I had brought my collection of stuffed animals with me, so I would have something comforting there with me.  Then the nurses came to give me an IV, and oh man, did I swear I was going to break my dad's fingers from squeezing them so hard.  Not long after that, they wheeled my bed into the room where they were going to do my biopsy, gave me the anesthetic, and I was out.  It felt like I'd just fallen asleep and woken up, and it was all over with.

The next morning, Dr. Barclay came into my hospital room and told my family that I had a rare form of hepatitis known as, Chronic Active Auto-Immune Hepatitis (non-contagious, hereditary, only found in women, and very rare.)  Basically, this meant my liver was being rejected by my other organs like a transplant, and had developed a lot of scar tissue on it.  This changed a lot of things for me.  It meant, I'd never be able to have alcohol,  I had to take anti-rejection medications, and that there was a good chance that one day I might have to have a liver transplant.

I guess one day came sooner than later.

--Jamie

The call comes

Jamie got the call at home on Wednesday January 26th at about 3 in the afternoon.  What a shock. I had just got back from Jill's (my boss' office and was just getting ready to sit down when Jamie called.  She was pretty hysterical and said "Daddy you have to come home now, they have a liver for me. "  All at once I couldn't breath and just shouted out "They got a liver for Jamie" .  I work in a cubical setting so it wasn't a secret on my floor at work.  I called my mom immediately, lucky that mom didn't have her phone turned off, and said "mom, get down to the house right now, they have a liver for Jamie'"  I couldn't have Jamie alone in the house, since it was going to take 20 minutes to get home.   I walked out of my cube and it was that "freeze moment" when my mind was just trying to actually figure out what to do, I just kept thinking deep breaths deep breaths. Lori my friend and co-worker walked into the pod where I was standing, and offered to drive me home. She could see the panic in my eyes, and I'm so thankful she did. Dawn another co-worker volunteered to follow Lori in my car, so Lori could get a ride back to work.  Lori drove like a trooper, between trying to watch traffic, keeping my calm, and the haze of cigarette smoke, because I was lighting them up one after the other all the way.    I'm sure I would have been running red lights, or turned on the emergency flashers and honked like crazy.  On the drive home, I managed to get a phone call to Jeff, and tell him to get home now, that we had the call, and then I called my friend and boss Jill.  I ran out so fast, that I didn't even stop by to tell her, as she works in another portion of the building and it was not within a direct line to my car.   Jill knew by the time I had called her.  My cube neighbor Erica, (as told to me by Jill a few days later), had walked over to Jill's office and said, "Tim's gone, they have a liver, and Lori drove him home and Dawn followed."  Jill then said Erica started to cry.  When Jill told me this I teared up as well, so touched by how Erica handled the situation.  Working in cubes there isn't much privacy, so Erica, knew all the history of this.  I just didn't expect to hear that Erica started to cry.  I don't know what I thought would happen.


--Tim

Dad's beginning too!

Welcome to Jamie and Tim's blog.  No I didn't set this up.  Jamie did, because I'm too old to understand.  At this point in my life, everytime new information enters my mind, other information has to leave.  Like the old Mad Max thunderdome movie, "two man enter, one man leave"  That's how my thougths work these days.

Brief History for those of you who don't know.
Jamie was diagnosed at 10 years with a auto immune liver disease.  Essentialy her immune system decided the liver it shared a body with, wasn't good enough so it decided to attack it.  We were lucky that we found a specialist, Dr. Barclay that figured it out within a couple of months.  I've read online that some people's cases took over a year to figure out.   But even at that point the damage was done, a lot of scaring on the liver. 

The family was told, it could go 3 ways, maintain, grow out of it, or transplant.  So as most of you, we are on the 3rd option 14 years, many hospital visits, countless tests, and many sleepless nights later.


--Tim

Welcome

This is a blog that is being put together about the process of going through my liver transplant experience, both before and after.  From my point of view and my fathers.  Hopefully, this can open your eyes to the wonderful opportunity of seeing how important organ donation can be.  So, I encourage you to keep reading as we post more.

Thank you.
Jamie