CoCo's Journey - Getting (some) Answers

Had to wear this shirt to my doctor 
appointment.  

 So it's been 16 days since that fateful walk into the St. Marks ER.  I ended up staying there for five days.  Diagnosed with Cirrhosis of the liver.  And facing an unknown journey and not knowing how it will end.

What have the last 16 days brought??  Well, I've let you know about the TPN.  Tonight, it goes down to a 12-hour drip.  It will be nice to have half my day free from IVY.  She gets a bit clingy.  So I feel like I can breathe and accomplish some life tasks.

I still get pretty tired.  Mostly when I'm attached to IVY.  She gets pretty heavy when I'm trying to accomplish things at home.  She starts to wear on my left shoulder and my neck.  I've been waking up with horrible muscle pain in my neck and shoulder.  So, I take a bath in Bengay or put on a Lidocaine patch.  Take two Tylenol for the pain.  Usually after that, I am functioning pretty good.  But I do start to feel the pain and the exhaustion when I have to wear IVY and when I am trying to get stuff accomplished. Ramble on much, CoCo??  Yikes.

When I went into the emergency room, I was full of a lot of fluid.  Apparently, that is common with liver disease. So, since being released, I have been on two diuretics.  Let me tell you, they work.  I get up probably four times in the night.  And I'm not always successful at making it quickly.  I have to unplug IVY grab her and get to the bathroom.  When my body wakes up, it's like, you gotta go now!!!  So I've had a couple of times where I kind of missed.  GAH.  During the day, I have the tendency to put things off, too.  I'm doing something.  I'm working on something.  YADA YADA.  So, I've had some close calls.  

The other issue with diuretics is they can affect your heart rate and your blood pressure.  My heart rate has been a lot higher than it usually is.  And my blood pressure is low.  So, I will be taking a few day break from the diuretics.  

Home health comes once a week.  They change my dressing on Chef PICCard, who works hand in hand with IVY.  They also take labs.  From those labs they decide what Chef PICCard feeds me.  I have no clue how long I'll be fed through IVY.  

IVY and where Chef PICCard lives.

Well, that's just the warm up.  Today was the day I finally was able to visit with my liver doctor.  A little bit about him, I call him Dr. Fed.  So does everyone else.  Because his last name is impossible to know how to pronounce.  He is a gastro doctor.  But he was part of the liver transplant team at the University of Utah for many, many years.  Here is what I got out of this visit:

I need to have a liver biopsy.  That will give him the extent of the damage to my liver.  I don't know when that will be - I did call in to schedule but had to leave a message.  Essentially, they take a huge needle.  They deaden you where they are going to use this needle.  Doc says it goes like between the ribs to where the liver is.  They put that needle there, it has like a trigger, they have you deep breath in and deep breath out.  When you breathe out, you hold your breath and they hit the trigger that sends this huge needle into your liver, grabs a piece, and retracts.  Yeah, sounds fun.  And they may have to do it more than once.

We are putting off the reversal of my gastric bypass.  But I'm pretty confident I want it reversed.  I am concerned that I will never get better unless I do.

I can go back to work.  So, September 16 I'll be back at it.  Yes, I will still be on TPN then.  I will work my TPN schedule around work.  So probably starting it around midnight and takin git off at noon so that I can go to work, for the couple of weeks I have left of the night shift.  I'll adjust when my shift changes back to the morning shift.  

Hey - he said I could still enjoy my Christmas margaritas.  That a couple of adult beverages annually are ok.  Cheers!!! 

I can still get tattoos.  I have a couple in my brain.  One of them the green liver disease ribbon.  I feel like that one is important.

Finally, the thing I'm having the hardest time, I can no longer have salt.  I need to keep my sodium level low.  Or I'll start retaining water again.  Which is not good.  My liver cannot fix itself if there is water in my system.  Do you know how much salt I add to my fresh garden tomatoes?  To my cucumbers??  To my buttered corn on the cob???  So much!!!  And I have a salt shaker by my chair in case I need more.  This is probably why I went crazy.  This summer has been one where I have eaten so many cucumbers, tomatoes and corn on the cob.  KayeLynn and I call it grandma dinner.  It's the food my mother lived on during the summer months.  KayeLynn and I have been doing that, along with other foods, this whole summer.  I have spent a fortune on the tomatoes and corn.  I go to the stand around the corner a few times a week.  I've been ordered to eat high protein, high fat, low sodium to work on reversing the liver issues.

I don't know how this is going to play out.  I'm headed to Wal-Mart or Smith's soon to get some No Salt.  Sounds horrible.  Anyway, when I get more info, I'll write about the significant stuff.  It's my way of journaling.  

Here are a few more pictures.  You may or may not want to see them.  So be warned, there is a blood draw and my ugly beaten arms if you scroll down.

Weekly blood draw.  They check so 
many things.  It's kind of crazy.  It's how 
they figure out what vitamins, minerals, 
and nutrients Chef PICCard needs to
feed me while being comfy in IVY.

My ugly arms.  This was another sign
I needed help.  These bruisy things happen
when your liver id damaged.  My skin is so
thin, I get a scratch and it just tears open and 
bleeds.  I got a scratch from some cardboard, it took
three days for it to stop bleeding.  Then I get these
little scabs from the cuts and when I run into something, 
they tear off and start bleeding all over again.
Vicious cycle!!