Damn Liver

Living with PSC & UC

And so it begins in the year 2002

We are all in search of hope.  I apologize if the name offends you but there’s no other good way to put it.  Damn Liver.  I’m not writing this to gain any sort of sympathy so let’s just say that right off the bat.  My condition isn’t great, but I’m thankful to be alive today and enjoy time with my family no matter how I feel at the moment.  It’s hard to always be thankful, but I have to try.   

So before I confuse you, let me step back in time to 2002.  That’s the year I found out that I had PSC, Primary Sclerosing Cholangitis.   I know it’s a long name.  Sounds more sophisticated than it really is.   Basically, PSC is a disease where your liver hates you and wants to be a total pain in the ass 24/7.  No, but really ;).   Keep reading.  I’ll explain.

Growing up I pretty much had a normal childhood.  We weren’t rich but we weren’t poor.  My parents (God bless them) did the best possible and gave us a childhood I am proud of.  I wasn’t ever really that good at school, but I loved baseball, and eventually music.  I was always sick, but just with typical Strep or some other cold type virus.  Never really knew why I would catch things so easily.   I remember in high school always feeling so tired, so weak that it was just hard to function.  My doctor, of course, ran all sorts of tests and told me that I had Epstein-Barr disease which is why I felt that way.  It seemed as if this carried on for months on end.  By the end of my high school year, I felt okay.

At this point in my life I was 18 and not ready for college (I never was) however I was ready to play in a rock and roll band and chase the dream.  My band played all over the place and I had more fun than you could imagine.  I wanted that to be my life.   But in 2002, I began to get sick.   It’s like I woke up one day and realized that I looked like a skeleton.  None of it happened fast, it just slowly progressed into having so many symptoms.  But I remember the itching like it was yesterday.  The torment, imagine thousands of mosquito bites or a sunburn as it’s healing.  It was never ending.  I was scratch so much in my sleep that I would wake up with blood on my sheets not to mention no hair on my legs.  I became jaundice and only weighed 110lbs.  My normal weight then was 155lbs.  Something was wrong.  Something was bad wrong and I knew it.   After seeing my doctor he was just puzzled.  Because my legs were so scratched up and had sores from scratching they thought that perhaps I had gotten scabies.   So I went to the dermatologist who then sent me home with some kind of cream that I put on butt naked and slept on towels on my floor for two weeks.   (And still itched).  I know you want to laugh, go ahead.  Now is the time.   Needless to say, it wasn’t  Scabies.   It was my damn liver.

So how did we figure out that I had a liver disease?  Well, it didn’t happen fast.   After my doctor ran a CMP (Comprehensive Metabolic Profile) it showed my liver enzymes totally out of control.  He then simply admitted me to the hospital because we just didn’t know what else to do.  I was taken into having an ERCP, to go down into the liver to see what was going on.  The Drs found that one of my bile ducts was blocked, so a stent was placed to open it up. There was a lot of infection and I ended up with a temperature reaching 104 and pancreatitis.

Everyone’s initial reaction was Hepatitis C, however, the tests showed otherwise.   A week went by, still nothing.  Alone I sat in the hospital room looking at the clock thinking “this is it, I’m going to die in here, I don’t want to die”.  That’s a horrible feeling to have.  During this time my sister Stephanie or shall I say Dr. Stephanie was in her residency as a DR.  She had been following my condition, and I’m sure she spent countless hours trying to piece everything together which I am forever grateful for.  She spoke with the Drs about what she thought this could be(PSC) however there were some pride issues and they simply didn’t want to admit what it could have been.

After numerous tests including an array of blood tests, liver biopsy, and a colonoscopy they settled on a diagnosis.   I had PSC with Ulcerative Colitis.  I remained in the hospital for a few more days as they put me on Ursodiol and Colozal.  After weeks of antibiotics, I was finally released.   I was weak, tired, and just mad about everything.   I was angry about what happened.  And again at the same time, I was thankful to be alive.  Alive to play music, and play music I did.   

During the next few years, it seemed as if everything went back to normal.   No more itching still tired from time to time but nothing major.  I continued to take 2200mg of Ursodiol and 6,000mg of Colozal.   It was a lot, 14 pills per day to keep the itching away.   I was okay with that.

I continued on with my somewhat normal lifestyle, playing music and just enjoying life with my friends.  In 2008, my wife and I gave birth to a beautiful son, Jameson.   I didn’t know how much he would change my life, but he did in so many ways.  He made me want to be a better person, father, husband, and friend.   My wife Ashlee is such a wonderful mother, always putting our children before herself.   She is the glue that has held this all together and continues to be.   

In 2010, I became very sick.   Maybe it was the stress of work and travel, or maybe just the liver disease itself.   But up to this point, my illness had been pretty mild.   I spent a few days in the hospital where they decided that my gall bladder was not functioning anymore (10%) and decided to remove it.   I remember immediately feeling better.   For the next few months, it was almost like I had forgotten that I even had a liver disease.   So much so in fact, that my hepatologist (in Little Rock), assumed that perhaps I never had a liver disease and requested to me that I stop taking the drug Ursodiol, a drug I had been taking for 6 years at that point.   

Soon after stopping the Ursodiol, I began to itch.   And for those of you that have this disease you know what that feels like.   My doctor performed some lab work tests that showed elevated liver enzymes (of course).  Due to this, I began taking the Ursodiol again.   Within a few weeks, the lab tests showed that I had improved slightly.

My sister (DR) Stephanie Houck, suggested that it was time to start seeing a qualified hepatologist at Baylor University Medical Center in Dallas, Texas where they are familiar with patients who have PSC.   This was the best decision that I have made.  Not only did they know what to do, they took the time to create a plan to help manage my disease.   Over the course of the next few years, my disease continued to get worse.   In the beginning, I always wondered why?   But that is what this disease is, it’s a slow progression.   There is no rhyme or reason to any of it in my opinion.   

But life continues on.   Never stop living.   In 2013, another miracle happened.  My wife and I had always been against having any more children.   Jameson was very active and with the disease and our life so busy all of the time, we just didn’t feel like we had time for another child.   God had other plans.   We welcomed our princess Blakely Anne Terauchi into our arms on August 12, 2013.   In my arms, I held the most precious baby in the world.   Let’s just say she is a Daddy’s girl and she stole my heart with no plans of giving it back.

Welcome to my life.   I hope that information that I share can give you hope, encouragement, or even some insight to new treatments to help with PSC.   If you have information to share, please share it.  This is how we learn to live with this.   God Bless you all.

52 Comments

  1. Thanks for sharing Jon. The pace with which most of us live our lives, it’s all too easy to take our good health for granted. I wish you and your family nothing but the best in your battle. I have a cousin that was diagnosed with MS in 2006 and started a blog shortly thereafter; it has been inspiring, informative and empowering for himself and others with his disease as he shares his experiences, successes and failures. And don’t forget, Kellum is ready to give you a kidney! (hope you never need one) LOL!

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