PSC Not All Wiskey and Drugs

A lot of times with any liver disease most often you will get stares that wonder how you got your liver disease to the point of failure and need a liver transplant.  Due to drinking? Or was it Drugs?   Luckily with living in Utah we do not get too many of those questions or stares but I have gotten a few.  But to some of my fellow liver transplant blogging friends they have had this issue and it comes more often then not.  I would like to blog along with them on PSC.
Cody’s condition comes not from anything he could have prevented.  He was diagnosed with Ulcerative colitis in 2006 and with UC the liver function is most often compromised.  March 2010 was when we started noticing Cody’s skin, and eyes turning more yellow-jaundice like so we decided to see a doctor about it.  Our doc that we normally went to was too booked and could not get us in soon so we went with an other doctor that we went to in the past.  He scheduled us for a liver biopsy in April.  From then we were advised of he had Primary Sclerosing Cholangitis or PSC.  And handed a written prescription to start taking.  With that we did not ever asking any other questions.  And honestly were never told the severity of the disease.
December of 2010 Cody started showing signs of bleeding internally.  We ventured up to the hospital where after a scope was performed they found a bleeding ulcer below his stomach.  Also while admitted the doctors started raising their concern of his yellow color.  Normally in December work for Cody slow’s down and this year did not, so we kept putting the Doctor appointment aside.  While speaking with the doctor(the Doc we should have gone to in the beginning-our doctor) he advised us the severity of the disease and what it all entailed.
Then began the Journey of “The Wait”  as detailed in many other post before.  But this is me on my Soap Box to let everyone know that liver failure is not all Whiskey and Drugs.  When someone that has an issue with any of those sort of things they do not get the same  luxuries as We get.  The have to prove themselves before they are even considered to start the process.  It is sober for so long admitting themselves to any type of meetings needed.  It is harder for them.  But when it comes to Decision day it does not change.  Still same guidelines:  1st Local/Regional -also considered Status one Acute Liver Disease less than 7 days to live. 2nd Local blood/tissue type, current MELD score, and body size.  3rd Regional (outside of our state) blood/tissue type, current MELD score, and body size.
So really you need to be sick and to the point that you will not survive.  It is really hard to understand that. Cody has been feeling so good lately, sometimes I find my self thinking how our life is feeling “normal”  I think I might jinx us by saying that.  Cause that is how I felt last December, getting ready for Christmas (early might I add!!-yea I am a total procrastinator!) and now anything can happen, at any time.
Its funny how through any life changing event yes you think you get back to normal but does it?  Our family has been dramatically changed, but for the good.  We are now taking our life to Pay-it-Forward.  I can not wait for the opportunity to do what others have done for us.  There is so much they have done.  But we will save those for an other post I am getting off subject.

We all have big changes in our life that are more or less a second chance.  But for me that change is a second chance at life.

Cody Anderson

May we all take this chance we have today to make the best of it.  Many have the chance to understand the reasons behind a disease or may judge the reasons behind it.

Just have to show of my so cute Birthday/Mothers Day gift!  Have to be some of the cutest kids I have ever seen!!!!

Whats An Other Year To You?

A year to me, Hutton will be 6 and finishing Kindergarten.  Huston will be 3 and running even faster then he already does.  Cody and Amy sorry leaving out the age here Who knows what they might be up to!  But to the point of the post….

Cody went in for his check up on the Tuesday the 3rd.  And all is well…actually better then well.  They were surprised at how well he was feeling, alot better then in January/February when we saw them last.   We talked about the current symptoms  that Cody currently has and any secrets to make them any more tolerable.  Cody has a bad case of itching, which is very very common for PSC or any type of liver disease.  They added to his medications to see if they could help him stop itching a little.  I hope so I am tired of seeing the injuries he gives himself from scratching too much.  Over all labs looked great there was a small spike on some of tests but not enough to worry.

Now they are telling us since his MELD score went down (was a 16 at listing and as of yesterday a 15) that it could easily be another 2 years before we will get a liver.  So it was a little rough to hear that.  Is it wrong I want my Husband to be sick?   Yea it sounds wrong in its own degree, but I feel like our life is going to stay on hold that much longer.  Are we going to be able to progress?  Or we on a stand still for the next 2 years?  Yes granted Cody will actually be able to have a decent summer and get to do some of the things that he wants, like our exciting Lake Powell trip that we have been looking forward to.  And of coarse the camping trips with the boys that Cody has so desperately wanted to teach the boys about.

At least for now and this summer we will be able to enjoy it and go do the things we wish and not worrying about missing the chance for a liver(yes if you go out of town you take the risk if losing a liver if one comes available, and you are not close enough to receive it.)