November 5, 2011

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   

November 4, 2011

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   

November 3, 2011

A letter to the 18 year old me

Photobucket


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    



November 2, 2011

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       

November 1, 2011

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

Happy Halloween

3of us


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!!