Damn Liver

Living with PSC & UC

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.

The past few weeks have been rough. What started out as a normal routine ERCP to remove a stent, turned into a week long hospital stay, followed by another week (this week). So what happened? Back in March 2016, I had a stent placed in the common bile duct due to a stricture that wouldn’t open. The stent was meant to be temporary. My GI Doctor decided that in 2 months that we would remove the stent and try not to place another one due to an increased risk of infections. May 23rd, I traveled to Dallas to have my procedure to get the stent removed the following morning. The procedure appeared to go well. Afterward, I went to my sister’s home where we ate some Japanese Udon noodles and just sat around and talked. But that night, I began to run a fever. Fever is the sign. The sign of more issues to come. We decided to watch the fever that night, but by morning the fever was worse and there was pain associated with the fever in the upper right quadrant area (liver). My Infectious Disease Doctor put me in the hospital immediately and began to infuse IV Antibiotics. We watched the numbers for the rest of the week. My Blood Cultures tested positive for Enterococcus Faecium. This wasn’t easily cured as it has resistance to a lot of antibiotics. So we battled it with Zyvox which seemed to do the trick.

—Enterococcus Faecium—

https://en.wikipedia.org/wiki/Enterococcus_faecium

Later on in the week I began to feel better. And usually even if I really don’t feel better, I try to convince myself that I do so that I can get home to see my kids and my wife who are always patiently waiting for me.

When I arrived home, I continued the oral Zyvox for a number of days. I went to work at the office and felt fine for the most part other than the fatigue but then again that’s always an issue with me so its hard to tell. But Saturday morning I woke up not feeling well. My wife and I dropped the kids off at my parents so that we could get some things setup in our flea market booth. After carrying a few items, I just looked at Ashlee and told her that I needed to go home and lay down. My abdomen and back were hurting so bad. A lot of pressure and caused me to have a really bad headache. I could feel the chill in my bones coming on. The fever. Yes, that pesky little thing called fever.

When we arrived at home, we laid in our bed and watched 15 or so episodes of Homeland. Which is a really good show by the way. But when I looked at the clock it was 6:00PM and my fever was at 102.8. Time to do something. I sent a message to one of my doctors. He wanted me to get blood cultures. But where? Everything was closed. Except CHI St Vincent ER. It just so happened that my little brother and sister were working that night. My younger brother Andrew started my IV and took the blood cultures while my younger sister looked over his shoulder trying to find something wrong with what he was doing :). Of course!. The labs came back. Verdict. Defiantly something going on in the liver. My Alk Phos was over 895, Bilirubin was 3.4 and rising, and all other labs were out of whack. Due to the complicated nature of my disease, CHI didn’t want to keep me there. The transferred me to my team at Baylor. The next morning my father drove me down to Dallas to be admitted to Baylor. We had a good drive down, other than the pain. I love having long talks with my dad. We don’t get to do it that often but he’s just a really kind hearted person and he loves me I can tell you that much.

We arrived at Baylor, and pretty much had a room waiting for us when we got here. We came upstairs and got settled into my new home for the week. My dad stayed with me most of the day but I could tell he was so tired. I told him that afternoon to go to my sisters and have a nice dinner and get some rest.

Meanwhile, at the hospital, they were running tests after tests. One verdict came back, blood culture positive forPseudomonas Aeruginosa. Yea try to say that 5 times fast. It’s not really a good thing to have. It’s known to be hard to get rid of because of its resistance to most antibiotics. So we are battling this one day at a time.

—Pseudomonas Aeruginosa—

https://en.wikipedia.org/wiki/Pseudomonas_aeruginosa

I spent the next day sleeping, waiting, getting antibiotics and well waiting…for yet another dreaded ERCP to get a stent replaced and see if they could culture some of the bile to see if that is where the infection did indeed come from.

The day of the ERCP. I was tired, of course, feel like I have been beaten. My poor veins just can’t take any more pokes. I had more holes than a screen door. Off to sleep I went and the ERCP was done before I knew it. I was back in my room in more pain than when I left that was for sure, but nothing new. ERCP showed some strictures of course and blockage so the stent was put in place (needs to be changed in 4 weeks). For now, we continue the antibiotics and see where that takes us. Right at this moment it’s all about controlling and getting rid of the infection. So being careful is the name of the game. Considering I was supposed to travel next week for work, I needed to cancel that too. Too much risk involved.

IMG_0185

 

A few more days are on the outlook at this wonderful metropolis spa / hotel here at Baylor. But before I go I must get a PICC line to help infuse iv antibiotics for the next 14 days. So what is a PICC line?

Putting in the PICC line looks like it would hurt pretty bad. It doesn’t feel good but when you have to have something like this done you just go with it and realize it’s not too bad. Just try not to watch as they shove an 18 gauge tube from your arm inside your vein all the way to the base of your heart. That’s kinda freaky to see.

The PICC line is in. Now just waiting on more lab results to see if we have the bacteria enough under control to let me go home and finish killing it with iv treatments at home. And when this is done. Looks like I’ll be back down here for another ERCP to get this stent replaced. And so goes the saga.

But we stay positive, hopeful, encouraged by each and every one of your prayers and thoughts. I’m thankful for all of you.

 

And of course we couldn’t leave a post without a little something from these two!  🙂

IMG_0061

53 Comments

  1. Anne and Brooks

    June 10, 2016 at 8:19 pm

    Great read! We continue to pray for you. Much love to you and the family. Let us know if you need anything, we are here and glad to help.

  2. Cindy winston

    June 11, 2016 at 2:54 am

    I hate that you are going through all of this! I pray that this will all end soon and you will be able to lead a normal happy life. I live my Jon Boy!!!
    Love you bunches
    Aunt Cindy

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