CoCo's Journey - Mortality Reality

This week has been one for the books.  There has been some good things, not so good things and more.  I will explain.

Last Saturday, my daughter and I drove to Idaho Falls.  We went to visit my bonus daughter and her family.  I wasn't feeling great.  But I wasn't feeling horrible.  By the time I got home, I had a lot of swelling.  I have been dealing with that for a few months.  I had started to see a specialist about my liver and my pancreas.  I had recently started a medication, it is a very pricey medication, but it's supposed to help me break down calories and nutrients so that my body absorbs them.  Even though I eat, my body was just shedding the nutrients and food I was eating and making it so I was not gaining weight.  I was 95 pounds.  And nothing I did would gain weight.  But I've gained 20 pounds over the last few months.  My clothes were uncomfortable.  But, I don't know if it's just the water retention or if the medication was helping me get that nutrition.

So this new doctor, who I adore, was doing everything he could to figure out what was going on with me.  And we decided to do the Creon medication.  When I have a meal, I need to take a pill (I'm a poet) and then it helps me with the food breakdown and absorption.  It seemed to be helping.  My doctor saw a CT scan I had taken, though my liver protein numbers were really bad, I didn't show any permanent damage.  Permanent damage is cirrhosis.  Your liver is damaged and depending on the extent, will not be able to repair itself.  

So back to last weekend.  Sunday, I just felt crappy.  I didn't know what to do.  I didn't have any oomph.  I called in sick.  Monday, same thing.  I knew I had no time.  I knew I may be in trouble.  But I couldn't do it.  I went to bed Monday, fully intending to go to work on Tuesday.  I woke up in the middle of the night with a very heavy chest, like a really bad case of indigestion.  My left shoulder was so stiff and in pain I was having problems sleeping.  I got up and rubbed Bengay on my shoulder.  Hopefully, I could get back to sleep.  I woke up later and was still miserable.  I made my way from my bedroom to my living room.  I was miserable.  So when KayeLynn made her way downstairs, I let her know that I felt I needed to make it to the emergency room.  So - going back and forth about how I thought it was just indigestion, and I should just stay home. We arrived around 11:30.  I am finally home five days later with a PICC line.  

I got back to a room pretty quickly. I was pretty sure if it was something serious, I was having a heart attack.   EKG done immediately.  Blood tests done immediately.  Heart CT scan done immediately.  Then we sat for a long time waiting. KayeLynn kept my other two kids informed.  I have it set up that I get notified any time I get tests done, etc.  So I would go in and look at all these results.  The CT of the heart was talking about fluid build up.  And it had a medical term there.  So - we looked it up.  You know - Google is not your friend when you're looking at what is going on with you!!  It said that I didn't have to worry too much unless I had cirrhosis.  Then it started spouting about weeks to live, etc.  I was like, WHEW, good thing Dr. Fed saw I didn't have cirrhosis.

Dr. came in and said, we don't know what is going on, but you have a lot of fluid.  I knew that.  I was retaining fluid like insanity over the last few months.  He told me he wanted to do another CT scan and see what was going on in my gut.  The heart was OK.  But there is fluid.  So - here they take me again for CT number 2!! My oldest  child had asked if she should come over.  I assured her that we were ok. So of course, the next thing is that we have the alert that I have new test results.   Brought it up, and looked at the test, lots of fluid build up.  And shining right there, I have CIRRHOSIS.  I'm suddenly realizing I have weeks, months to live.  I had told KayeLynn we didn't need to worry unless I had cirrhosis.  So I said out loud, in my shocked tone, I have Cirrhosis.  KayeLynn immediately knew we were in serious territory.  She said, I need my sister here.  She was there within ten minutes.

So I am not as worried about dying in a couple of weeks. We will get into that more in other posts.  As I get more information, you will get more information.  There are things happening, and I honestly don't know everything that is going on.  It is unlikely, not impossible, I will be dying in the next couple of weeks or months.  

After the cirrhosis diagnosis, the first order of business they set up was to get the fluid out of my gut.   I was taken back to an ultrasound room, where they ultra sounded my gut.  They found the biggest pocket of fluid between the tissues and such, stuck a needle in my gut and took out the fluid until it stopped flowing.  There was this and then another container with about 1/3 amount as the first container.

Me holding the first container of fluid taken out of my gut. 

I was then told the best thing was to admit me into the hospital.  Probably a couple of days.  To come up with a plan.  I met my hospitalist, Dr. Gallagher.  He knows my liver/pancreas/gastro doctor.  I was very appreciative of this doctor.  He worked very hard coming up with a plan.  The next day, he told me that he had been talking to Dr. Fed (my liver guy).  And that I needed a feeding tube, and probably needed at some point to reverse my gastric bypass. I am in dire need of nutrients and protein to try and get over this bad time.  So I asked about having TPN, which is IV nutrition, instead of a feeding tube.  It was either an internal feeding tube or the TPN.  I would be waiting for a final verdict.  I gave Dr. Gallagher my surgeon's name for my gastric.  

The next day, the doctor gave me the final verdict.  Dr. Paulk (gastric bypass doctor) was willing to reverse my bypass.  And I would be getting set up with TPN.  I told them they could set up the reversal that day, but I am definitely not healthy enough yet.  So - I need to be on the TPN for a while.  

Today, five days after going in for what I thought was a heart attack, I have a serious and potentially fatal liver disease, I am finally home in my own space.   I am going to kick ass, break down walls, make my voice heard for myself and do everything I can to make myself healthy.  Home Health and I are going to become very good friends while they work on reversing the low protein and malnutrition issues that have damaged my organs.  

This is going to be where I keep track of my journey.  The posts that start CoCo's Journey will be just about that.   I will provide more details.  More insight.  And prognosis information.  Right now, my full intention is to kick liver disease's ass.  

More photos from my hospital adventure:

Just hanging out in my room.  Five days!!!

I have passed along my dry/dark sense
of humor to my family.  Roommate daughter
found this and got it for me.

Just sitting in the recliner.  My butt hurts from
so much sitting

Beautiful flowers the bosses sent me
from work

What they wrote on my sign.  So sweet
My nurses and aides were so amazing.  

My response to them!!!

First day of school face timing
about how it went.