December at last

Oh December.  I love the holidays.  Who doesn't right?  For a second there I was in a panic because I couldn't  seem to get myself in the spirit.  But today seemed to be the day that changed that.  Everyone was out of the house.  Except mom, but she was in her room all day.  So it was just me.  I got the rest of the decorations on the tree.  Got out some more decorations.  Looked online for a few gift ideas.  Then I hung up some lights in the boys room.  Figured they would enjoy that.  And they did.  Anthony fell asleep "under the stars" in no time and Alex joined him shortly after!  Now I am just going though some photos really quick before I go to bed.

Can you believe that last set of photos on my memory card were from Halloween!  That is a whole month gone by that I didn't even bother to take out my camera.  I love the camera on my phone, but I love my camera even more.  Poor baby has been neglected.  So I'm leaving her out where I can see her and use her more!  Tomorrows Advent activity is a trip to Sea World to see if Shamu celebrates Christmas.  Pray it doesn't rain.  If it does I'm sure we can find something instead.

Speaking of pictures here is my favorite shot of the night :)  Sweet Dreams!

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Toot Toot

Want to  hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you – Health Activists are modest, selfless creatures by nature – but you simply must give yourself props today.

Write three things you love about yourself – things you’re great at – or just want to share about yourself that are important to you.

Its the last day of National Health Blog Post Month.  I cant say I did all 30 post but I did what I could and I think I'll revisit the ones I missed soon.  It was a lot of fun.  I learned a lot about other peoples illnesses and   a lot about me.  I cant wait see whats next!  Thank You to those that helped put this together.

So 3 things I love about me....

I am a good wife and mother.  At times I have questioned this, but I know in my heart that I am doing the best I can and that is what its all about.  I love my boys and husband more than life itself and there isn't anything that I wouldn't do for them.  I refuse to let my illness get in the way of that.  We know that some days will be better than others, but together as a family we will get though them.  I have been truly blessed with a beautiful family and I will never take them for granted!

I am open.  Its proven, I just cant hold things in. I like to talk my problems out.  I like to get things off my chest.  There are a few things in my life I like to keep to myself, but for the most part, if you ask, Ill answer.  I may over share at times and sometimes I think out loud.  Did I just say that?  Anyways, I think its important to share.  Your thoughts and opinions.  Speak up when you think you could help make things better or spread the word for a good cause..DONATE LIFE.  

I hope.  Even if its just a little, I always have hope.  And a smile.  I hope that people aren't really as bad as they seem.  I hope that even the worst situations turn out for the best.  I hope that one day there will be a cure for cancer and that all childhood illnesses will soon have a cure.  I hope that I will not have to wait much longer to get my transplant and that I will heal quickly.  I believe there is hope in everything and everyone.  I hope I am able to do all 30 days next year.

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Say What? Bottoms up?

As advocates, you're constantly in the health conversation: looking at what's being said and trying to help people navigate new diagnoses, treatments, symptoms, and stigma. You work hard to put great, honest info out there wrapped in narrative - truly putting a face to what patients go through every day and really making a difference.

 So it must be totally frustrating when you come across something false, incorrect, stigmatizing, or just plain outrageous. Let's use that today. What is the most ridiculous thing you've heard about health or your condition? Was there any context? What did you think at the time you heard it - and what do you think of it now?

 How do you address these myths and some of the other absurd internet info on your condition?

A few days after I got my diagnosis, I had broken the news to family and was now debating if I should tell any one else.  It wasn't something that I spent days thinking about.  As a matter of fact, I wrote out and email and sent it to my closest friends.  And then started this blog.  I am not one to hold things in and hide them away.  Seeing that there was no one else sharing their life with Budd Chiari Syndrome only proved to me that it was the right thing to do.  After all, people needed to know what life was like with this disease and that it would be OK   So I opened myself and my life up.  Updates, photos, stories.  I was not at all prepared for what came next.

When I added the "Ask me anything button"  people asked, and their questions broke my heart.  Although I have a feeling the people asking are people I know who just had nothing better to do with their lives.  And that is even more sad.  One person asked "Do you expect your husband to stay with you now that your sick"  Another was "How to you expect to be a good mom when you cant even take care of yourself"  But the one comment that hurt the most was "The apple doesn't fall far from the bottle, does it?"

Really people?  Come one!  Do people really think that everyone with liver disease is an alcoholic.  Yes my family is known for drinking and yes, I myself have had drank myself stupid, but what happened to me has nothing to do with drinking.  Alcohol actually thins your blood and I have a blood clot in my liver.  So maybe I should have drank more?  I take that back.  I would rather have this failing liver than to have to struggle with that addiction any day.  

And it didn't stop there.  I have actually had friends say "Damn, guess we drank to much back then"  and "I didn't know you still drank like a fish"  People that matter to me.  I know they meant it in a joking way, but it still felt like a knife to my heart.  I did not do this to myself.  I could not have stopped it.  It is what it is, whats done is done and I am just trying to live the life that was laid down before me.  

And what makes me sad is I have heard time and time again from my liver buddies that people have thought the same of them.  They are in the ER and even nurses comment on them being to young to have drank themselves in to liver failure.  There are so many other causes.  As a matter of fact, the leading cause of liver failure is TYLENOL! In fact Johnson and Johnson lowered their max dose on Extra strength Tylenol from 8 pills to 6.  This should have taken place this fall, but I haven't checked yet.  You can read the complete story HERE! There are liver cancers, Chronic and Autoimmune Hepatitis, Primary Biliary Cirrhosis, Primary sclerosing cholangitis (PSC), Wilsons Disease, Fatty liver which yes is more commonly caused by alcohol abuse, but not always.  I could go on and on.  

The truth is, before I ended up with liver disease and I used to think the same.  People who had bad livers and needed transplants must have had drank way to much.  I have no problem setting the record straight.  Now I know better and I hope you do too!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Remember when

Free write a post that starts with the line “I still remember…” See where a memory takes you. Write for 15 minutes (without stopping if you can) then go back and see what you came up with. What was the story that you told?

I still remember the days we used to go to the park for hours on end.  When the house was filled baby belly laughs and the pitter patter of tiny feet running around.  I remember the biggest decision of the day was sweet potatoes or bananas.  Bottle washing and pumping in the middle of the night.  I still remember that newborn baby smell and that heartbreaking crying.  Tiny peeling hands and the sweetest little toes.  The cooing and the spit bubbles.  The feeling of calm when they fell asleep in my arms.  The hugs in the middle of tantrums.  The first time they said Momma and I love you!  The bumps and bruises from learning how to crawl, walk, run and ride a bike.  The tears over broken toys and the smiles at the sight of new ones.   I still remember the excitement I felt when I learned they were coming and the falling in love with them the second they were placed in my arms for the first time.  The butterflies on the first day of school and the consoling after his first bad day.  I still remember the pride I felt watching him get on the school bus for the first time and the fear when he got off on the wrong stop.  I still remember all the ultrasounds and stress tests.  The way they rolled like crazy when certain songs were on the radio and the way they always calmed down when I talked to them.  I still remember the first time David felt him move and the way he looked when he held his boys for the first time!  I still remember promising them that no matter what I would love them forever.  That I will always do whats best for them and that I would move mountains to keep them safe. 


Yes, I still remember the days when my boys were just babies. They grow so fast.  And as much as I want to stop it and just keep them little, I will sit back and enjoy the boys they are now and the men they will become.  

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Its ok to laugh!

Today we are writing about things that make us laugh.  Laughter after all is the BEST medicine right?  And for many of us that are sick we know just how far a little laughter can go!

There is never a shortage of humor in this house.  Especially when you add the boys in the mix.  Each in their own way, can make me laugh until I cry.  They keep me laughing though all the bad. But its their faces that crack me up the most.  Funny faces keep us out of trouble.  Sometimes with the boys are arguing I let make faces at each other.  By the time they are done laughing they forget they were even arguing.  Or when I am frustrated, I will make a funny face at them and everyone wins.  No yelling just laughing!  Just the way we like it around here.

          

 

         

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Repost: Do I look like I need a liver?

Day 19:  Grab a post from your archives and re post it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

In doing this challenge, there is one thing that stands out even more than ever.  There is not a lot of talk about liver disease or organ donation.  As I've said before, I don't mean it to belittle any other sickness, but Liver Disease is very serious and there are 112,624 as of today 10:22pm waiting for a life saving organ transplant.  I think sometimes we get brushed of, because well, many of us just don't look "sick".  Yes we all have our bad days, but its not until we are deathly ill that it shows.  That's when we turn yellow from jaundice and swell up with fluids from ascites.  We start to lose weight...see, I'm not that sick yet!  I haven't been confined to a wheel chair and I have not had any hospital stays.  But its coming.  And for now, while I look and feel OK, I am going to live life to the fullest.  Cherish every moment with my family and share with the world my story.

Do I look like I need a liver?

Yes, today is April 1st. Or as many call it April Fools Day. But for me and around 110,000 others today is something else. Something bigger than jokes and pranks. Something very close to our hearts. Or in my case Liver. Yes, today is April 1st. The first day of Donate Life Month!

If you were only a stranger, passing me on the street or in the store. Or if you were a telemarketer or hell, a bill collector, they call me all the time. You would never guess that I am on the Liver Transplant list. Most people when I tell them have the same come back. “But you look fine” And yes its true, I am still able to function on my own. I am not lying in a hospital bed with tubes everywhere. I am not in a wheelchair. I still smile. I take care of my kids. I laugh and love just like anyone else. For the most part.

But on the inside I am not fine.  My liver is swollen with blood.  It hurts.  It doesn't filter out the toxins in my blood so they travel to my brain leaving me confused and unable to concentrate.  Slowly I am getting sicker and sicker.  I live each day as its the last.  Praying that my family knows just how much they mean to me.  And and that my children don't forget me or how much I loved them.  Each night I give hugs and kisses.  I always say I love you when hanging up the phone.  I remember the good times and I forget the bad...

There is nothing else I can do.  But there is something you can do.  Please take a few minuets to stop by the Donate Life website and register to be an organ donor.  Ask your friends and family to do the same.  

So what is someone on the transplant list supposed to look like? Like me :-)





This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Inspired by Ricki

A comment as a blog post. Pick someone else’s post (from the past or from today) and write a comment to them. Write that comment as your blog post for today. Link back to them to let them know you were inspired.

My Comment is on Ricki's latest post over at Ricki's Journey.

Buddy, I haven't heard from you in forever and I cant tell you how excited I was to see a new post here.  I remember all your pep talks from before you received your first liver.  You are such an inspiration to me.  So easy to relate to and you have made my journey less lonely.  Sure there are others out there that mean the world to me, but there aren't many moms out there on the liver transplant list that are so willing to share their experience with the rest of the world like you have.  I am so glad to hear that you are out of lock up.  It makes me smile to know that you got to trick or treat and do all the other "normal" mom stuff.  But you are so much more amazing than normal.  Seeing you fight, even if its a struggle gives me hope that one day I will have the same strength as you.  Then I read the sad bits.  The stuff that you and I have joked about because we don't want to cry about it.  Thank You for having a sense of humor, I'm glad I'm not the only one :-)  I miss our chats dearly, but It makes me so happy to hear all the good things.  Please know that you are in my prayer and here is a ((HUG)).  You are truly an inspiration to me.
-Kim 

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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Letting go of the Fear

I don't want to be sick.  No one wants to be sick, I know, but I'm so afraid of getting sicker.  And its not a matter of if I get sicker, its just when.  Waiting for my body to give out on me.  Constantly being aware of every little twinge and pain for fear that its beginning.  Every nose bleed, every bruise brings fear.  Every stabbing pain makes my heart stop for a minuet.

I often guess what is going to come next.  Will it be the varices in my esophagus that will make me vomit blood?  Or will it be ascites that will make me swell with fluid to the point of looking 9 months pregnant again.  Or maybe I will just slip in to a coma from my encephalopathy.  Yes these are all thoughts that cross my mind each and every day.  Or maybe my kidneys will give out first.  Then I will have to wait for a liver and a kidney.

And whats worse is that I'm not going though this alone.  You would think not being alone would make it easier, but for me sometimes it makes it worse.  I'm scared enough going though this myself, I don't want my husband and especially my boys to see me go though any of this.  I don't want to miss school plays and activities because I am in the hospital.  I don't want my boys to see me hooked up to machines and tubes.  I don't want them to be any more afraid of me leaving them as they already are.  Or as I am of leaving them.

They have already been though and see enough and its only just begun.  My 6 year old can tell you stories about my liver and how I need a new one and my 2 year old has seen me throw up so many times that when he is sick he knows to run to the toilet and brace himself for it.  They know when the alarm on my phone goes of that its time for me to take my medicine and ask me multiple times a day if I am feeling OK.  They know just when I need a hug and are always ready with open arms.  I am constantly quizzing David to make sure he is up to date on my doses and medications.  And I tell the poor man any little thing that could be a "sign" just so he knows whats going on.  I know it worries him, but when I do get sick, he needs to know whats been going on so he can answer questions for me.  I hate putting them though all this.  And on most days the guilt just about eats me alive.

But there is nothing I can do but embrace what is laid down before me and be as prepared as we can be.  I know our family is going though a lot with my illness, but I believe we will all be stronger for it.  At times it seems like its to much for the boys.  Like maybe I have been to forward with them, they always find a way to calm my thoughts.  They are both happy and very adjusted boys.  They are loved beyond the moon.  It shows in the corners of their mouths when they smile, in the sweet breaths in between laughing fits and in you can see it  in their eyes.  When they hug they squeeze me tight and when they say I love you you can feel it in your heart.  Yes my family is on this road together.  Its going to be a rough ride, but we will be holding on tight to each other and together we will get though this!

Putting away the fear for a while.  Until it creeps back up on me.  There is so much I have to enjoy and live for right this moment.  I'm gonna give the boys bigger hugs and kisses tonight.  And spend as much time with David as I can when he gets home tonight.  I love that I can tell him my fears and he can always calm them.  Its a little less scary with you remember you aren't alone!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J  

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Can I?

I think I can get through the holidays with out crying

I think I can be a better listener and friend

I think I can complain a lot less

I think I can take a few mins each day for myself

I think I can go to bed a little earlier

I think I can sneak in more hugs and kisses in the day

I think I can talk to all of my brothers and sisters in the same week

I think I can send out Christmas cards this year...on time ;-)

I think I can make more healthier home cooked meals for the family

I think I can accept the help that is being offered to me

I think I can get though the rest of this challenge

I know I can take better care of myself and not feel guilty

I know I can be a more patient wife and mom

I know I can stop trying to help people who will only hold it against me

I know I can put my families needs before all others

I know I can be a little more social...In real life.

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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Lonely no more

The road though life with Liver Disease is a lonely one.  Or it was when I first found out that is what I was dealing with and started writing here.  I couldn't find any other people out there with Budd Chiari Syndrome.  Nothing more than medical reports and a few headlines.  I kept writing to get the thoughts out of my head, to keep my family updated and just in case one day someone might stumble upon my blog and actually find it helpful or interesting.  Most of my comments were from family and friends, and the occasional spam bot.  

Then one day out of the blue a woman writes to me.  All the way from the Netherlands to tell me that she came across my blog and she too has Budd Chiari Syndrome.  I could not believe it.  Someone all the way across the world found my blog.  We talked back and forth about my being pregnant when diagnosed.  She told me there, many didn't believe you could have children if you had BCS.  She offered comfort and friendship.     

Why didn't I think of it before? A Facebook search for Budd Chiari led me to a whole group of folks who also had BCS.  Some were doing better than others, but when I introduced myself, I was overcome with welcomes and hugs!  That is when I found out there were even more places I should have discovered already.  Places like Living with Liver Disease,  The Waiting List and Transplant cafe and eventually here to WEGO.  

It has been a blessing to me to have met the people I have met though these communities.  Its so nice to find support in people who don't even know you but know exactly what you are going though.  Who don't judge you. Who will answer even the silliest of questions.  Who can tell you what to expect with out sugar coating it.  Truth.  And suddenly I wasn't so alone anymore.  

I love hearing from you all.  In comments or emails.  On Facebook or Twitter!  I love talking about my journey, parenting, anything.  I am pretty much home bound so its nice to get a hello every now and then.  So don't be a stranger!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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Green ribbons for all

I dream of the day when I see green ribbons everywhere I turn.  I don't mean to sound out of place, because I understand how important awareness is for other causes.  Cancer, lupus, diabetes to name a few.  But I cant say I have every seen anyone wearing an organ donation awareness shirt or hat.  I've never been asked at the store to donate a dollar to help the cause.  Our donate life walk had hundreds of people attend, but I want to
see thousands.

Right now I am a member of a few online Transplant communities.  Its amazing to see how many people there are that have had or know someone who has had a transplant.  Its amazing to hear their stories of how hard they fought to live and amazing how their gift of life has changed their lives.  But outside those groups I have never seen anything promoting awareness for us.  That needs to change.  I want to see banners on Facebook and for #Donate Life to be trending on Twitter.  I want to see our stories on the front page of MSN and yahoo.    And I want to help spread that awareness.  Through this blog and anywhere else I can.  Educating people on the importance of being organ donors is critical to us.  We could have all the money in the world for the best research and studies, but its the people, its the donors who save us.  When I say that we could not live with out them, its the straight truth.  Its people saving people.  With out more organ donors, more of us will die. Waiting.

Please visit Donate Live America and register to be an organ donor. Be a hero!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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I am Hope

My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess. It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.

What do I look like to my readers?  Good question.  But I'm not really sure how to answer that.  Id like to think I look like me.  Id like to think that I'm am the kind of person that when someone reads my blog they can hear me saying them.  Or the person that when people meet, that meet me and say I am just like they would have imagined.  In a good way of course!  Because what I write is me.  My life, my experience, my words.  Its all me.

I honestly was going to uses a skip for this prompt.  I was sick as a dog yesterday and just didn't have the energy to sit down and write this out.  Better late than never right?

I sat here staring at the prompt and wondering my personal brand was.  Do I have one?  I just couldn't come up with anything.  One thing I have been struggling with is reading and comprehending what I'm reading.  Id like to thank my liver and HE for that.  But when I read things, even Anthonys first grade homework, I have to read and re read and then try to remember and understand what to do.  And of course not get off track like I just did.  OK

A front facing leader.  Me?  Nah. I'm more of the sharing type.  Being front and center, not my thing.  Unless its for a good cause.  Wait.  Liver Disease and Organ Donation awareness is a good cause.  And I would do anything I could to help spread that awareness.  So, I guess that makes me a leader?  Well I'm getting there anyways.

What do I look like to my readers?  Good question.  But I'm not really sure how to answer that.  Id like to think I look like me.  Id like to think that I'm am the kind of person that when someone reads my blog they can hear me saying them.  Or the person that when people meet, that meet me and say I am just like they would have imagined.  In a good way of course!  Because what I write is me.  My life, my experience, my words.  Its all me.

But a brand?  My brand? I'm lost.  Or I thought I was.  I made a comment on twitter that I might skip this prompt because I had no idea what my brand is.  And got this from my ever so sweet and supportive friend Stacy.

@KMunoz28 your "brand" my dear is Hope! With a huge scoop of perseverance & the sweetest taste of motherhood that ever was!! #justsayin

Hope.  When I started this blog, the first word that came to mind was Hope.  It was what I needed.  What I knew would get me though this journey that I'm on.  When I started to research Budd Chiari Syndrome, I felt hopeless.  There aren't very many people out there with it.  Well actually there are quite a few, but no one talking about it. I wanted to know what to expect and what I was facing.  And came up with nothing more than mortality rates and one blog in which the lady abruptly stopped posting after writing that things were bad.  Yes, I felt hopeless. I dug deep and found the strength to fight.  I could not just give up.  My boys needed me. At the time my oldest was 3 and I was pregnant with my second.  I found hope.  And I'm here today sharing that hope with all of you.

**Special thanks to Stacy for always knowing how to help me.  If you are a parent, or not, you have to check out her website Kids Stuff World.  This is one amazing mom, woman and friend! She is a blessing**

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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My lovely lovenox legs

*for some reason Black Eye Peas My Humps is stuck in my head now*

I started my Lovenox again on Saturday.  I have to continue them until next Saturday.  I get to take Sunday off from all my meds and them Monday I can will be getting my wisdom teeth out!  Praise the Lord!  These things are killing me!  I'm thinking I might have to move to my stomach because when I wear shorts I look like a druggie.  Seriously.  I went in to the gas station and I am pretty sure everyone was checking out my legs.  And that is in no way a good thing!   The good news is they aren't as bad as they were last time and I am only doing them for a week!  Woo hoo!  So with out further interruption, let me present to you my Lovenox legs

And yes, I know I have the legs on the opposite sides but when I did them the other way around it looked like one big mangled leg and kinda freaked me out.  I really sucked at lining them up though.  That is driving me nuts!  OCD much?!?

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3 Truths and 1 lie

Here are 3 truths and a lie.  Can you guess which is the lie?

1. The only way to cure my Budd Chiari Syndrome is though a Liver Transplant.
2. I have a third kidney but I need a new liver.
3. I was told by one of my Drs that I should deliver my baby at 28 weeks so I could focus on me.
4. There is a 50% chance I could give the boys the same blood disorder that caused my BCS

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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Case of the Mondays

I'm tired.  Of everything. Last night, the little one wasn't feeling well and went to bed at 7.  I was in bed by 9:30. Next thing you know its almost 11 and I hear him out in the living room talking to David.  Who of course is ready to go to bed.  So  I have to get up and hang out with him.  He was wired!  It didn't help that I have a nasty head cold.  The one where I just want to stab by head to let some of the pressure out.  Instead  I sat there with my sweats and robe and finished up yesterdays blog post.  Yawning and nodding off the whole time.

I'm tired of being sick.  I'm tired of taking medicine.  I'm tired of my Lovenox injections. I'm tired of thinking about the pile of medical bills I have to pay.  I'm tired of trying so hard to act like everything is OK.  I'm tired of the watching the same episode of Mickey Mouse over and over.  And tired of having to fight the boys about baths and bedtimes. Tired of all the bickering and drama around here.  I'm just tired of being tired.

I just want to sleep and not have to get out of bed until I want to.  I want to be able to eat what ever the heck I feel like and not hurt after.  I want to be able to pay off my bills or better yet not get billed so damn much.  I want to catch up on all the shows just sitting on the DVR.  I don't want to have to be the mean mom! I want to not be so tired of everything.  Its not me at all.  Its sad when I am thinking a few nights in the hospital would be like a mini vacation at this point.  I want this day to be over.

I'm taking today off.  And I will check back in to life on Tuesdays.  Get all the things I need to get done,  over with.  Tomorrow I will be productive and energetic.  OK maybe not energetic, but enough to get what needs to be done, done!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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If I could change the world...

This one is an easy one for me.  If there was one thing I could change, it would be the lack of registered organ donors.  Every day an average of 18 people die waiting for a transplant.  And every 10 minuets another name is added to the list.  Its sad. I know what I would change, but I don't know how.  I set a goal to get 5 people to register this year and made it to 6.  That is nothing when you consider there are over 112, 813+ people waiting for their call.

I don't see why people have to choose.  How can you not want to donate?  What could you possibly need your organs for after you are gone?  You could save 8 people and enhance the lives of so many more.  All you have to do is register. Give a father the chance watching his son play ball and walk his daughter down the isle.  Give a mother more time to hold her children tighter and tuck them in at night.  Give a child the chance to experience all the joys of just being a kid and to live a full and happy life. Everyone wants to be a hero.  Here is your chance!

I'm hoping to get more involved next year in raising awareness for organ donating.  This year I raised $222 for the Donate life walk.  I didn't make my $500 goal, but it felt so good just helping.  And I will try again next year!  I'm also thinking about making somethings to help spread awareness.  Shirts, bracelets and that kind of things.   I'm open to ideas though, so if you have any, please let me know!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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5 things that changed my life.

Day 5 of 30.  List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

1.My Third Kidney
   One thing you dont want to hear during your prenatal ultrasound "Oh, you have a 3rd kidney?!?"  A what?  Yes you read that right!   In the middle of the excitement of seeing our first healthy baby, the tech drops that kind of bomb on us.  Turns out there is such thing as a pelvic kidney.  Who knew.  I went the next 3 years thinking one day I could donate it to someone.  Turns out I'm the one needing and transplant.  No extra liver in there.

2. My Second Fetal Scan.
    Another thing you don't wan to hear during another prenatal ultrasound (3 years later) "Ummm The doctor is going to come in and explain my findings to you"  Yes you read that right again.  Another baby another crazy ultrasound.  This time it was noted that my liver and spleen were severely enlarged.  Remember that 3rd kidney?  It was actually my spleen that had been pushed into my pelvis because my liver and growing baby had pushed it out of place.  So, I traded a spare spare kidney for a bum liver.

3. Finally a diagnosis.
     My first visit with the GI doctor, I was a nervous wreck.  He sent me straight down to get scans after my appointment and from there I went home to wait for a call.  As with most calls I was thinking he would call me back first thing in the morning the next day.  I remember answering the phone with a smile.  Trying to hang on to some hope.  I mean really, how bad could it be?  He described my liver as impressive.  And then told me that was not a good thing.  He told me that I had what is called Budd Chiari Syndrome or blood clots in the veins that carry blood out of my liver.  I know he said something about finding a doctor in Houston that was willing to do scans on me.  No one local would because I was already high risk pregnancy and they didn't want to risk it.  The rest of the conversation in fuzzy at the moment.  I know I have a photo of the page I wrote my notes on that day.  I went down stairs and tried to explain what I had just been told to David and his Mom but my lips were chattering so bad and the lump in my throat just kept growing.  I about passed out from fear.  I was sick, I was going to need a liver transplant, and the was told I would need to deliver my baby as early as possible to save my life.  Pretty life changing stuff If I do say so my self.

4. Unexpected Letter
    May 2010.  We started the month off so great.  We spent Anthonys 6th birthday at the beach.  All he wanted was to go to the beach and spend the night in a hotel.  It was our first family vacation/get away that it was just the 4 of us.  And it was wonderful.  The last few days of the month we spent with family in the Valley. Davids Grandfather had passed away.  It was a sad time.  And I was glad to see the month go.  It was a 5 hour drive home and we stopped to check the mail.  I saw a letter from the transplant clinic.  I sat in the car and read.  "Dear Mrs. Munoz.  The transplant team here at Methodist Specialty and Transplant just wanted to let you know that as of May 25th you have been listed with UNOS on the Liver List."  It was real.  I was really going to need a transplant.  That was one of the days I was reminded that it was all real.

5. Needles
    Anyone who has any kind of illness knows that you can not be afraid of needles.  I have always been.  I once passed out in front of the whole school getting a TB test.  The little 4 prong pokes.  And after that I got all shots and tests done in the hospital with nurses around.  Shortly after I was diagnosed with BCS, I was told it was caused by a blood disorder.  And that I was going to have to take blood thinners for the rest of my life.  Easy Peasy right?  Until I found out that while I was pregnant, those life saving blood thinners came in the form of twice daily self injections.  I went from being the girl who go queasy just thinking about shots to being the girl who sat in the bathroom and had to face that fear.  Sticking the needle in my leg took a while, but the pain was nothing compared to the burn that the Lovenox gives.  I'm telling you, its burns like hell.  I over came my fear of needles quickly.  And now tomorrow actually I have to start them again for a week.  Once again I'm freaking out.  David offered to do them for me.  And promised he would be nice.  I told him I'm more afraid of the Lovenox itself than the needle.  Id take 100 needles over 1 burning bruising shot of lovenox. I'm a wuss about it, but only that.  Blood draws, vaccines, anesthesia and even my epidural are nothing anymore! I am no longer afraid of needles.


This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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The orange box

Day 4 of 30.  What happens after you press “publish.”

I'm going to guess its different for every one but my button is an orange box.  With the dreaded words publish written so neatly in it.  I guess dreaded isn't the right word.  As I don't so much dread sharing my thoughts with you all.  But you bet I sit here and stare at my draft for a long while before I click it.  And after I do, I go back and double check the spelling. Even though I spell check a hundred times, I always miss something.  Some days I don't even bother.  I write, hit publish and never look back.  Mostly when I am venting.  Or when my mind is over run with toxins and I'm all loopy.

I have new posts sent to Twitter and my Facebook page automatically.  Because lets face it, there is no way I would remember to anyways.  There is a few times where I have re shared my posts on Twitter because they were posted either to early or late when no one is around though.

How many times do you go over your post before hitting publish?  Have you ever hit publish and then changed your mind, and had to delete it?  Yeah...me either ;-)

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J   

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A letter to the 18 year old me

Dear Kim,

Look how far you have come.  It was close, but you made it.  Now its time to leave behind all that you have ever known and find your way in the big bad world.  I promise you its not as scary as it seems.  You are going to go though more heart ache and pain than you can have ever  imagined, so live now!

Right now I know David is your everything.  Make sure he knows that and appreciate him.  Make him feel as loved as he makes you.  Always be there for him, but give him space too!  Word to the wise, when he is sick, just leave him alone.  He is going to be the rock that keeps you settled when your whole world gets turned upside down. Hang on tight.

One thing you will have the hardest time with is forgiving mom and dad.  They are who they are.  They are who they choose to be and that decision has nothing to do with you. It is not your job to fix them.  So learn to love them just the way they are.  Forgive them when they say things that you know they don't really mean.  Talk to them every chance you get but know when to cut the conversation short.  They love you and you love them.  Forgive them for the mistakes they made when you were younger.  The sooner you can do this the sooner you will realize just how much you really enjoy their company and love.

Another thing you are going to want to get over is the guilt you feel for leaving the younger 2 at home.  You did not leave them behind.  They are not your children and even though you will stay up many of nights worried sick about them, you have to accept that you did all you could do while you were there.  You could not stay any longer.  And you had no means of bringing them with you.  You have done all that you were able to and one day they will thank you for it.  Even if they make you feel horrible about it first.  That's what little brothers and sisters are good for.  Be there for them always.

Speaking of children, never forget the baby you lost.  And to be completely honest with you, you will lose another.  Your heart will shatter in to a million pieces.  You will blame yourself, you will blame David, you will blame anyone you can.  Its no ones fault.  Be patient.  One day you will be surprised by a positive test.  You only need one.  Maybe 2. Not 15. Enjoy being pregnant.  Love your body as it grows your son.  Use lots and lots of cocoa butter. And rest.  Pack your bags early though.  Because this kid is going to surprise you.  After he is born you will feel a love you never knew existed. You are a going to be a great mother.  You will love everything about your life as a mom that you will be anxious for another.  Again be patient.  All good things come with time.  Before you know it and when you least expect it, you will just know it.  Baby # 2 is going to be your saving grace.  Give him a strong name that he can live up to.  He won't let you down!

From here the road is going to get bumpy.  There will be doctors and surgeries.  Medication and tests.  I cant even get into detail, because something will always change.  Things will never be the same, but with time and love, you will make it though.  Remember to have fun with life. Even when it feels like you just want to let go.  Don't be so serious. Laugh with the boys more than you scold them.  Love David like every day with him could be your last.  Have emotions.  Let them out.  Cry, it will always make you feel better.  Have hope.  Never lose it.

There is so much more I would love to tell you, but there is so much you need to see and learn for yourself.  Believe in yourself.  You got this!


This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J    

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The reality is...

 "Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog."

I cant tell you how many times we have said "Damn, if only we had our own reality TV
 show!"  Seriously, I don't think people would know what hit them.  And I have no idea what it would be named.  Of course if it was about my blog then I would just call the show Hope Whispers.

I think something along the line of a reality/documentary would be right.  Following me from the ultrasound that threw up the red flag till long after my transplant.  It would be nice for others to see, what I go though. To see me struggle the few months after Alex was born, when I was feeling like I was barely hanging on to my life and having to juggle being a new mom on top of parenting a toddler while my husband was busy working.  To see me laying in bed all night going over the hundreds of what ifs.  To watching me wake up after my surgery and get to finish living the life I set out to!

I think it would be nice to see it from the boys view too.  I often wonder how my 6 year old views my liver disease. He has asked so many questions.  Thought out questions.  And has cried so many nights begging me not to die.  He has little bouts of resentment because I am not able to spend time with him like we used to.  I go out of my way to try and make him understand and know that I love him so very much.  

And what about  my marriage.  Ever wonder what it is like to go from happily married to feeling like there is no way we could make this work.  Watch as we both feel guilt over my illness and watch us find our way back to each other after we almost lose everything.  We argued more in the first year of my diagnosis than we have in our whole 11 years together.

And you cant forget all the Dr appointments and scopes and surgeries.  Watch me tear up because I hate sitting alone in the exam room.  Hear my thoughts as I lay still in the MRI.  Better yet, hear the MRI.  Ive have been trying to explain to my family what it sounds like!  Watch my pill count go from 1 to 4 to 10+.

I think we need more shows, movies and media that shine the spotlight on organ donation. It would be so nice to not only document my life, but others who are at every stage in transplant.  From the hundreds of tests it takes just to get listed.  To the waiting part of the journey.  Just waiting to get sick enough to get better.  To the struggle of staying alive and well after transplant.  We are have our stories.  Some of us are parents waiting,  some of us are parents of a child waiting.  All with different reasons for needing a transplant.  All with different outcomes.  People really need to see just how hard life can be on the list and how important it is for more people to sign up to be organ donors.  To be heroes!

This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J       

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Titles of my future book

OK I just now sat down to go though my emails and so I didn't have much time to think these through.  But here goes. Day one of NHBPM (National health blog post month)

5 titles of my future books

1. Hope Whispers.  Everything was perfect.  A loving husband and sweet little boy and one more on the way, life could not possible get any better.  It wasn't quite what Kim had imagined her life would be like, but none the less she was living it and loving it.  Until the day it was all pulled out from beneath her.  On a routine ultrasound of her unborn child, Kim was told there was something wrong with her liver.  Finding out later that she was going to need a liver transplant or she could die.  How would she explain this to her children.  Would her husband stick by her though the journey? All she could do was hang on to what little hope she had left and pray it would all be OK.

2. A liver friendly cook book.  When I first found out I had liver disease and was going to need to severely adjust my diet, I did what anyone else would do.  I looked high and low for recipes that would not only be liver friendly but husband and kid approved to.  I took recipes that we loved, adjusted a few things and still had great tasting, filling and family friendly meals.

3.Intoxicated Youth.  No one besides us ever really knew what went on behind closed doors.  The late night arguments and fights.  The screaming and the bottles breaking.  Hiding in the closets with our hands over the ears of the little ones.  Crying ourselves to sleep at night and praying that tomorrow things would change.  Tomorrow never came.

4.I love you more.  This is a story of a little boys who finds out that his mom is sick.  He begs her please to get better.  He cries "I love you mom" and she always replies " I love you more"

5.My life for yours.  Finding peace after organ donation.  This would be a collection of stories and letters about people who have received the gift of life though organ donation.  What is it like to know that someone had to die in order for you to live? What is it like to meet the family of your donor?  How can we get more people to understand organ donation and sign up to be organ donors too?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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Happy Halloween

Happy Halloween from the 3 of us.  David had to work, which was a huge bummer, but I won't even go there. We had a wonderful night.  Even if we left home at 7 and didn't get home till 9.  And still only went to maybe 10 houses tops.  After we stopped at Grandma and Grandpas, the boys decided we should just hang out there.

Was it just me or did October just sneak up and pass me bye?  Our costumes were not at all planned and we ended up using ones we already had.  And considering we only walked down two blocks I'm sorta glad we didn't go and buy new ones.  Next year I have to be more prepared.  I'm thinking I might coordinate our costumes next year.  We will see.

Our pumpkins were a big hit. Its funny because people were so amazed by them but I don see very many out. Don't people carve pumpkins anymore?  Its my favorite part of Halloween   There were some amazing costumes.  One girl had made a hello kitty head.  It was awesome.  Lots of pirates and princesses.  And lots of girls looking like hoochies.  I have to admit, I think we dressed up like that one year.  Embarrassing! Two things I did learn this year is 1, I'm glad I don't have girls and 2, I will have to pick something more kid friendly. While my guys didn't mind, I made my friends baby cry and one little girl said I was el coo cooi and refused to come up the drive way till I turned around!

I hope you all had a wonderful Halloween! I know we did.  Bring it on November!!

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