Damn Liver

Living with PSC & UC

Author: terauchij

October 17th, 2016 – A day to remember that I forgot…

I know.  It is December 11th and I’m making a post about October 17th but now that I have time to collect my thoughts of that day I realize that October 17th is the day that I forgot.   I remember very little details about that day.   But let’s back up.

Andrew was approved to be my donor!  What an awesome feeling that was.   Also very humbling to me that my baby brother would risk his life to save mine.   We were all inspired by this act of kindness and selflessness.   My extended family at LCB put together a fund raiser that would ultimately help Andrew and I both get through 3 or so months of really trying times.   We knew what we were about to endure, I just don’t think you’re really ever ready for it.   Our family and extended family at LBC knew this as well and they were so prepared to stand by us the entire time offering prayers and support that goes beyond words.  I can’t thank them all enough for stepping up to the plate and helping during the time that we went through.    With each day that was growing closer, I thought I would be getting nervous but I wasn’t.  I was just living day by day like normal trying to tie up loose ends at work and helping Ashlee take care of the children.  And then it happened.  Infection.

 

Infection.  It was our worst nightmare.  I’ve had numerous infections (Cholangitis as they call it) throughout this past year, each infection would land me a stay at the Baylor Inn for a week or two or sometimes three.   This made the doctors nervous because we were only 2 weeks away from surgery.   So instead of spending the last two weeks before the surgery with my wife and kids, I ended up spending it with all of my favorite nurses and a miserable bed.  The doctors were concerned that the infection could cause them to cancel the surgery but more than that if they chose to go through with the surgery that I would need to be on some very powerful antibiotics.   So that is what they did.  I was on 4 very powerful antibiocs and would continue to be on them throughout the surgery and after.

 

After 8 days of antibiocs the day was almost here.   My doctors decided that because I had not run any fever that they would release me from the hospital for the weekend to spend time with my wife and kids before the surgery.  Andrew came down that weekend as well to get settled into the apartment before the surgery.   The picture below was taken that weekend right before the surgery.

 

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Photo Credit (See bottom for link) : Jacqueline Spivey

 

Twas the night before surgery

‘Twas the night before surgery and every creature was stirring….especially me!   It was about to get real, and I was feeling the anxiety.  I wanted to hug my kids over and over because you’re never really sure how this stuff goes.  They say It’ll be fine but that doesn’t really sink in.  My wife had been by my side since the day before because the doctors admitted me to the Baylor Inn back on saturday night so that I could start IV Antibiotics again before the surgery.  My kids came to see me and that was the best feeling in the world.  For those of you who know Ashlee and I, our kids are our entire world and it broke my heart to hear them asking so many questions.   The hospital looks scary for adults and I just can’t imagine what its like for children.   But they are troopers!

 

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Giving the kids some love the night before the big day.

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I remember at this moment realizing that this would be the last time in a few months that we would all be together and me being able to hold my kids, picking them up and just holding them.  I didn’t sleep much that night.   And then just like that the nurse came in and said its time to go.   I felt my heart drop.  I thought of a million things I forgot to do or had not done and more anxiety just set in.

When I arrived downstairs in the pre-operation room, I was able to see my brother.  That made my day so much better!  He was in good spirits.  We laughed about the wired things that they were making us wear, like this really odd butt patch thing.   (That’s a story for another day).   The family was able to come in and see us off.  They came and got Andrew first.  He was nervous but we just laughed and told some jokes.  Until they came in the room and said its time to go.  I was the last one to hug Andrew and tell him that I would never forget what he has done for me.   We cried and then he was off.    They would not come get me for a few hours as they had to open him up and make sure that his liver was going to work for me.

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*I’m pretty sure we had been laughing about the butt patch!

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And then, the nurse came back and said the Doctors were ready for me.  I felt immediate panic!   I felt like there is no amount of time on earth that would be enough for me to say goodbye to my family.  And one by one I received words of encouragement, hugs, and I love you’s and then that was it.   When we got to the OR Room, I remember just crying thinking of my wife and children and not knowing what the outcome was going to be.   This was a very complicated surgery and thinking about it lasting for 12 hours was just something you can’t think of when you’re right in the middle of it.  But I thought well here goes nothing and I started to breathe the oxygen.   The Doctors and nurses were so wonderful, they made sure they gently put me to sleep and then ……..   I don’t remember.   So we will have to let these pictures tell the story.

Right before they took me back.  I was loving on these two as much as I possibly could.

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There are not enough words to tell you how much I love and respect this Lady right here.  Sara Wilhite was there every step of the way and she is an absolute angel to me and my family.   We go way back all the way back to the Sonic Days  LOL

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For 5 hours the tension was on.   I’m not sure what everyone was doing but I am sure Sassy (Sara) made the kids have some fun.   Andrew was now in recovery and doing well.  The wait was still on at this point.  I had another 5 hours of surgery to go.  Thankfully I wasn’t aware of it 🙂

Surgery was finished.  The Doctors explained to Ashlee and the family that it went very smooth and that it almost seemed as if Andrews liver was designed just to do this.   Normally they can have alot of complications with living liver donor transplants because with my disease PSC they must cut out all of my bile ducts and portal veins which then makes it very difficult to find or make ducts to sew the new liver to.  But Andrew’s liver gave us just exactly what we need.  Now starts recovery.   Thank you God that I didn’t remember too much of this part.

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* In ICU for 24 Hours to monitor

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* DR. Stephanie Houck (my sister) looking at vitals and levels making sure nothing is changing and that all is headed int he right direction.  She has been my best friend through alot of this.  She has been helping me with my disease since we found out and was able to help me get into Baylor and be seen by the absolute best.  Thank you Stephanie, I Love you.

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* So then I’ve been finding these pictures.  Posing with me.  Ha Ha Sara…..Funny :).  At least let me wake up!

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* Andrew and I seeing each other for the first time after surgery.  Unfortunately I don’t really remember it, but I know I was thankful.  So very thankful.

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* Meanwhile back in the room we have pumps, medications, pumps, and medication….

Over the next few weeks, I spent healing slowly, getting use to taking new medications and dealing with stomach and digestive complications.   But not before I got to see one of my best friends up there on the unit.  Jaqueline Spencer, the poster child for PSC.  She is such a trooper and an inspiration to endure what she has.   She and I have been dealing with PSC together for a while.  My sister was her palliative care doctor and we were introduced as she spent alot of time on 14 as we call it.   She has such a great heart.   She came by to help me walk.  We met so many great people, I even met a guy named John, who had a brother who donated his liver to him just the day before.

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Thank you all for your thoughts and prayers.   I wanted to share this experience with you to let you know that it’s okay to think you’re not capable of going through something big, but its not okay to not try.   And in the end, it all works out exactly how its suppose to.   I’m thankful for family, friends, and my shiny new liver.

Let the healing begin.

Well. I suppose since I am wide awake at 2:30am even though I’ve taken a sleeping pill 2 hours ago, I wanted to give an update.  

I’m 15 days post op! Time seems like a blur, but slow at the same time. I know I am making so much sense. I was discharged from Baylor on Oct 24th. I was really exited. I felt okay, was able to walk and get around pretty good. Andrew was still at the apartment recovering and doing great! That night, I had some miso soup, rice, and a cookie and decided to call it a night. Ashlee and I did our nightly ritual which consisted of watching an episode or 10 of one of our favorite shows and then drifted off to sleep. Well one of us did for a short while. I felt so uncomfortable. My abdomen felt so full that I thought it was going to explode. Taking so many medications isn’t a new thing to me but I thought maybe that’s just it. But then it became too much. I began to vomit, and it was violent. The pain was excruciating. It felt as if the staples and stitches everything holding my abdomen together was just ripping apart. Ashlee woke up and was there with me every step of the way. We called my transplant nurse and waited for a call back to see if we needed to go into the ER. The pain was so bad I remember yelling Jesus help me and then saying a few choice curse words and Ashlee saying would you stop, someone’s gonna think we are crazy over here. Then here comes Andrew, hey man want some Zofran? After 3-5 hours of fighting this, Ashlee got us ready (literally I mean us) and took me to the ER. When we arrived we were escorted in through the physicians referral center. They began to ask questions and all I could say is I’m going to puke. And that I did over and over. There wasn’t even much there. But the pain wouldn’t stop. After they had calmed me down and given me medication, they did a CT scan which shows that I by stomach and intestines were distended and needed to be suctioned. I was like fine do it at this point could the pain be worse or maybe I would get some relief. They told me they were going to put an NG tube in. Ok.


 What’s that. Don’t know don’t care just do it……wait your gonna what? No no. Damn it was all I could think. Well I suffered through it. I can’t even describe what it felt like. So I’ll just leave that part out. As they began to pump my stomach I began to get relief. For the next three days I was back on the 14th floor Roberts Building. Things got better each day. Finally I was released (again).    
Over the next few days I was determined to get better. I was slowly getting my appetite back with the Reglan that they gave me to help jump start my stomach and intestines to get back into somewhat normal routine.   
And then it happened. The Uncontrollable diarrhea. It wouldn’t stop. I had gone to the restroom no less than 20 times in 5 hours. So back to the ER for me. I could barely walk I was so dizzy. When I arrived at the hospital Sunday October 30th, I was severely dehydrated. They started fluids and performed some more CT scans to try to figure out what is happening. After 24 hours of not eating it obviously had stopped. But the cramping was still happening just making everything uncomfortable. The transplant team believes that this could be caused by either A. A virus that has been going around, or B. Reaction to one of the medications that I am taking. Yea. One of the 28. Kinda hard to weed that one out.   
This morning my GI doctor wanted to do a scope to make sure that my Ulcerative Colitis isn’t flared up which would have had the exact symptoms that I have been experiencing. So at 6:30am they wheeled me down for yet another procedure. The anesthesiologist didn’t show up….apparently no one put it on his schedule. But eager to get the test done my GI doc says well I guess we will just have to do this conscious sedation. Okay, to me that means hey we are gonna stick a scope up your butt while your kinda awake and kinda asleep. So being me I said here’s the deal doc, I’ll let you do that to me but your next. He replies. “Laughing. I like a smart ass in the morning”. So they give me Versed and Fentanyl and next thing I know it was over. Actually I slept until 3pm this afternoon. The tests came back okay! No flare up from what they could see. So what caused this episode? Yea…..don’t know.   
However I am feeling better. So, hopefully I’ll make my 3rd discharge tomorrow. And this time I’ll stay out!


I can’t thank my wife Ashlee Terauchi enough. I know this has been tough for me but it’s been 100 times more tough for her. Trust me. I’m not an easy patient. But she has stood by me, stayed with me, brought me food and snacks and clean clothes everyday. It’s been so hard on us not seeing our kids for so long. And those of you who know us know our kids are our entire lives.   
My family, Beth Winston Terauchi Yuji Terauchi Amanda Terauchi Ford Tonashae Echols Sara Wilhite Debbie Cusick-Outler all the girls at LBC thank you from the bottom of our hearts for keeping our kids busy and in routines to make this as easy as possible for them. You have no idea what that means to us.   
Well that’s my story and I’m sticking to it. It’s 3am now….I must be lonely.  
Sweet dreams folks

A living donor?

So. we have some big news. As all of you know, I’ve been quite sick this year with PSC. Sick enough that my team of Doctors at Baylor Medical Center in Dallas, TX decided to put me on the transplant list this past month. They said at this time that a living donor would be all that insurance and surgeons would consider but that we needed to proceed to try to make that happen. I had such an out pouring of love and support from close friends who were evaluated to see if they were a match. Unfortunately due to other medical or personal issues they were unable to donate. That is when my little brother Andrew stepped up and was evaluated. This week we received a call that he was a match and we will proceed with the surgery this coming October. This campaign is to show support but also to help fund Andrew’s living expenses while he is away from work for 6 weeks to donate 2/3 of his liver to me, essentially to save my life. He is in fact, My hero. Thank you all for your prayers, love and support.

https://www.booster.com/damnliver2

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We will all be posting updates on this blog throughout the process of the transplant.   stay tuned 🙂

Tick Tock, Tick Tock…

The clock on the wall has been stuck at 3 for days and days….mostly because I took the batteries out of the clock. It drives me nuts. The constant tick tock throughout the night. Not even the morphine can drown it out. They say home is where the heart is, and that really is no lie. I can tell it that it is not for sure here at this hospital. Although, I have some lovely nurses and a great care team but I would much rather be home. I never thought at 34 years old that I would be dealing with something so complicated. But on the other hand, I never thought at 34 years old that I would be successful in business and be able to provide a good life for my wife and kids. It’s a lot of work, there is no doubt. But through it all, family is so important and we should always never take even the smallest moments for granted.

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Get down with the sickness.

Rob Zombie and Disturbed?

Well, of course, I love a great rock show. This was nothing short of that. Would I ever bring my kids to see them? Probably not. Actually, I was surprised I went myself. I didn’t really have a strong desire to go, because all though these bands are great, they aren’t exactly my cup of tea. But, my wife on the other hand…

So a little back story. When Ashlee and I started dating, she was all about Rob Zombie, A7X, and any other hardcore rock band she could find. I was a little more conservative, listening to Revis, Matchbox 20, and Counting Crows to name a few. I loved hard rock by my days of listening to heavy metal and mostly loud distorted guitars were coming slowly to an end and I was more interested in the melody of music along with good songwriting. That said, I ended up listening to a lot of A7X, Rob Zombie, or whatever else Ashlee was listening to.

 

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Help us Raise Awareness and Donate to a good cause!

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About Wire and Honey:

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Baltimore. A beautiful, gritty, and unabashedly unique city. We are a city that colors outside the lines. At Wire and Honey, we create hip, urban clothing that represents the heart and soul of our beloved city. We draw inspiration from music, culture, and local flair while endorsing and promoting love, tolerance, and global health awareness.

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And in the end, the love you take is equal to the love you make.

The love you take is equal to the love you make.

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Most of you who know me, know that I’m a decent person. But there is always room for improvement. I’m not always the nicest person I could possibly be, I tend to have a short fuse with things that irritate me. And sometimes my mood is determined by how I feel. I shouldn’t ever blame my attitude on a disease or how I feel, but I am sure most of you have been there before. It’s just hard to stay positive all of the time. I try, but then I get sick and my thought process is just not the same. I wish I could say I could control it all of the time, but I just can’t. I’m not saying I am a mean person, I’m just saying sometimes I can be a jerk and not realize that I am.

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What’s your daily intake?

Currently, I am taking a drug called Ursodiol. Ursodiol is used to dissolve gallstones in patients who do not need to have their gallbladders removed or in those in whom surgery should be avoided because of other medical problems. However, ursodiol works only in those patients whose gallstones are made of cholesterol and works best when these stones are small and of the “floating” type. It is also used to help prevent gallstones in patients who are on rapid weight-loss programs.

It is believed to help make your bile more fluid so that it flows easier through constricted or narrowed bile ducts. For me, all that I know is every time I have ever tried to stop taking it I get sick with Cholangitis.

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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.

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