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.)

An Event To Change Your Life!

Last night we had the opportunity to attend Bob Eggett's Anything For A Friend Event.  It was amazing and then some!  The feeling that you felt was really honestly indescribable.  It showed really what the true meaning of Anything For A Friend really is.  We did not know many there, but you felt like you were amongst family.  They had an amazing turn out numbers were reporting around 1000+ they ran out of food and raised about $18K!!!  They had a kids corner that our little monkeys adored... Really did not see them most the night they were way too busy playing!
At the event Bob and Ingrid Eggett introduced the upcoming recipients Us, Cyndy Tangren, and Mila Garcia.  We had photo ops with all of the recipients from past and present, that came to support Bob and his family.  Please go read all of these amazing peoples stories.  I would tell you but Anything For A Friend's site tells it better.
It calmed alot questions that Cody and I have had in our minds.  We have been so very fortunate for all the many many people that have donated to our event.  Cody and I at times have not felt deserving of it.  But seeing what we saw in others eyes at the event calmed alot!  We know having that event and accepting the help really helps others.  From the event makes us just so much more excited for the many many events to come.  We have big dreams for Anything For A Friend just like they do.  We see our event as one of the first stepping stones of what is to come.  The next stepping stones will come in time but they will be close together and easy to acheive with our "friends".
We met some people that were friends of a past recipient, did not know Bob, besides his picture from the website, but were following their new "friends" and the last things they said to us as the left was: "See you on June 4th!"  Honestly that is what Anything For a Friend is really all about!
It was an amazing night, one I would not have missed for the world!  Can't wait for the many more to come!

Therapy

Well it has been quite a while since the last post.  Alot has happened, Cody continues to feel "all right?" he has felt a little pain with a slight fever and some major sleep insomnia but still great spirts and trying to stay active, seems to keep him feeling better.  Most days has to take a nap with Huston but over all doing good!  Just how we want it-I guess?-
Fundraising has gotten underway and is rolling really fast!  This week has been rough since the meeting on Wednesday I have gotten hardly any sleep! Always running up to my Mom's to talk about the fundraiser.  With AnyThing For A Friend by our sides we have and can accomplish alot.  Anything For A Friend had a "special" ran on them right after conference and has become ever more popular!  There was one "Angel" that watched the episode and then decided that she wanted to help, boy did she help!  Honestly can not even explain how many things she has donated!   Chantelle is a true example of a Daughter of God!  She told us she has been looking for someone to share this with and felt we really needed it.  Honestly we do not know eachother and have never met but she still has done so much for us and still finding more to do.  To see the many things donated by her company of Diviine Modestee go to Anything For A Friend and look under the donations.    We keep getting more and more people that are so willing to help us out.  There really are some great people in this world, I wish I could write about them all and thank them.  I hope I can one day.
Well my "therapy session" by what I mean is the starting the fundraising planning being fully engulfed in the planning and everything has been so very therapeutic!  It wipes out the negative completely.  It feels good to be able to do something and stay busy and feel like I have control of something.
We decided to change the 5k run to the same day as Cody's Mom was planning the benefit dinner.  With all the Cons it just seemed better to have an afternoon "fun run"  along side the dinner.   So it will be a great party, we are going to see people that we have not seen in the longest time.  Those people seem to be coming out of the woodworks!  It is amazing the people that we have heard about, ran into that know and care so much.  So we are having a meeting on the 16th at my Mom's house and in need of more people.  Leave a comment and I can give you the info you need to get there. 
Stay tuned in for more event info We will be doing pre-registering for the 5k and are working on getting that event page set up to have that started.    Will try and keep more posting coming I know I have forgot some things, till then  Love you all...A

Fear Not! Doubt Not!

What a week! Nothing crazy happened but just a rough one.  Don't worry all boys(big and little) are doing great! I have had a very rough week, I found a blog of a former liver transplant recipient(2007) and I stayed up way way too late and spent too many hours to count one night reading.  I thought when I started reading it, that it was good for me to know.  But as I climbed into bed that night and could not fall asleep I started doing too much "thinking" a few hours later finally asleep and the anxiety began.  It is amazing how your mind can dream up things.  After 4 days of emotional outbursts I was told by Cody I am no longer allowed to read that blog.  My poor family has had to deal with all of this! I compare this week to when we found out Cody needed the liver transplant and do now know which was worse since I knew more detail this time around. 

But gotta love Cody first he was mad that I let my mind wander that long before I said anything and that I read it.  But with the most sincere way any husband could, he calmed me of all my fears.  It is preatty bad cause he is the one getting the transplant not me!  And for ME to get anxiety is rare! He's always been the one that does enough worrying for the both of us.  But after that I felt better, of coarse still knew I had stuff work through I was able to finally "act" normal.  Still struggling a litte we went to church and had great lessons as always and we were reading in the New Testiment and honestly can't tell you what the lesson was about cause around the beginning we read a scripture: Matthew 14:31  

And immediately Jesus stretched forth his hand, and caught him, and said unto him, O thou of little faith, wherefore didst thou doubt?

After that someone spoke up Fear Not! Doubt Not!  Then said again directly to Cody and patted him on the leg.  Little do they know what impression that they made on me.  Honestly it was what I needed to hear.  I know that if I fear not, and doubt not He will stretch out his hand and help me in my time of need if I keep my faith and do not doubt.  I always knew that but sometimes your mind gets away from you.  Well gets ALOT away from you.  I am grateful they were insipred to speak up in Sunday School today. 

On a lighter note Fundraising is underway moving along greatly!  Marjean has gotton the June 4th event going and it is running very fast.  She has some very chosen sisters that have been so willing to help us in our time of need.  April 6th is our first meeting for the Walk/Ride/Run 5k hope to be scheduled for July 9th.  We have also been accepted by Anything For A Friend a nonprofit organizaion that will help us get the word out about the 5k and really help us with whatever we need.  We are really lucky to have Anything For A Friend besides us. 

Mom and I went and met with Yes!Utah we want to help with donor awareness.  We met with somebody that wants to help us and help get others to be at our fundraisers to help create more awareness, they also have a fun old fashion taxi cab that they said we might be able to have at the 5K possibly.  So that is exciting that we have then on our sides too!  So we have had alot of happy things happen this week dispite my "episode" but are so greatful for all the support we have.  Thanks love you all!   A

Food For Thought

Just saw this fact and found very interesting.....

In the US there are about 19 liver transplants per million population.  This is about twice the heart transplant rate and about one third of the kidney transplant rate.  Each day, about 77 people get the organ transplant that gives them a second chance, but 19 other die waiting for a donated organ.

HHHMMMM Thoughts????