The other call

Maybe its just me but I'm going to guess that if you are on the transplant list and this number pops up on your caller ID, you might just freeze up for a second.  In my case I was sleeping one minuet and wide awake holding my breath the next.  Obviously this call wasn't THE call, but it was one that left me feeling really excited.

It was from a wonderful lady from TOSA or the Texas Organ Sharing Alliance, inviting me to a volunteer training session next weekend.  They are going to train us how to effectively share your donation or transplant story in the community.  We will get to meet staff and other patients/families. And learn more about the changes in the Organ Donation community as well as how to initiate activities that will spread awareness.

Now don't get me wrong.  I LOVE to share my story.  Online. But I don't think I am anywhere near getting up in front of a whole crowd.  But I would like to someday so David and I will be going and I'm super excited.  She sent me an outline to write my story out.  I think I will write my story out just to have it.  Who knows, I might even join in on that part.  Ill be sure to share more afterwards.  I'm guessing its going to be a pot of new information to share!

Wishing you all a wonderful week!  Much love.

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Mrs. February

I don't know why I didn't share this earlier, but I had the honor of being Mrs. February 2012.  A few  months back, Marissa reached out to me and asked me if I would be willing to be part of he 12_12_12 Project which shines the light on one new condition or cause each month.  Marissa lives with a vestibular disorder.  Something  I had never heard of either before we met.

I thought that I have done a lot of research and reading about Budd Chiari Syndrome.  Boy was I wrong.  Marissa wasn't joking when she said she wanted to learn more about it.  She was buying books and drawing diagrams.  She wore liver disease awareness shirts to her appointments.  And even her Grandma AKA Gram, was rocking the awareness bracelet!  Thanks Gram!

On Tuesday Marissa posted the podcast of our interview.  I was so nervous I was laughing.  And now that I hear it I am still laughing at myself.  I think I sound like a 5 year old.  But we are our worst critics I guess.  Be easy on me, it was my first time doing something like this.  I have Skyped with family and talked on videos that I have of the boys, but this was in a whole new category.  Hopefully you all enjoy it.

So jump on over to Marissas Blog and check out all the work she put in to this.  I just want to say Marissa, Thank You again for inviting me to be a part of this.  You are amazing.  Im looking forward to learning more over the year.  Got nothing but love for you girl!

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Liver Clinic Update

#1 Liver Transplant Program in the USA!!!

Today was my follow up appointment at the liver clinic.  Its been 5 months.  The appointment itself wasn't all that helpful.  It was quick.  The Dr I saw today was nice, don't get me wrong, but I miss my old Dr.  who never seems to be in anymore.  And I'm just not very comfortable with any other the others.  I feel bad saying that.  But its how I feel.

I spent more time with the RN who did my vitals and entered my info.  My new medication to be added was Vitamin D. We added my dizzy spells and swelling legs to the chart.  I can always tell when somethings up with theses guys.  He asks me, "Hey, what does your blood pressure usually run?"  I told him its been so low at times they cant even find a pulse in my wrist.  No Joke.  Today it wasn't so bad. 98/60.  But he did have a hard time finding my pulse.  He said it was so faint.  No one has ever made a big deal about it, so I never asked.

The Dr came in did his thing.  Tapping on my belly, checking my ankles for swelling.  The whole deep breath in thing.  The only thing he really brought up was that I needed to have another endoscopy done to check for varices.  Not big news to me since it was written down in my questions to ask already.  He said he was going to schedule it but never got back to me on that.

I asked him why I didn't have a shunt and he says "Well because your Vena Cava is clotted too."  He explained that it wouldn't be helpful to reestablish blood flow in to a vein that isn't open anyways.  Then he mentioned a shunt straight from the liver to the heart and told me that he has done two of them.  One went very well and one went VERY BAD.  No thank you.

I asked him about a liver biopsy.  I had it written down in my notes to expect one every 2 or 3 years.  And he said that at this point it wouldn't really matter what they found because they already know they don't want to do anything until something happens and I have complications.  Not anything new but still very disappointing to hear.

So with that, I was on my way.  Getting my lab work done.  I will call tomorrow and get my MELD score.  On the way home my arm sprung a leak and I bled through my bandage on to my nice only worn twice shirt.  Then though a few napkins too before stopping.  My guess is my IRN is high.  Ill find out tomorrow when I call.

Until then!  That's all I got.  Much love to you all!  Thank You for your constant prayers and well wishes.  They mean the world to me.

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Weekend Fun

This weekend was perfect.

Sunday we spent half the day at a new place with the boys.  Its a tiny indoor playground.  In Alamo Ranch for those of you here in SA.  We had a blast.  There was a wall of couches for the parents, free wifi and even a snack menu.  Alex spent most of his time in the playhouse.  Each side was something different.  A cafe, house, b ball court and his favorite part, the gas station.  He filled up Anthony's cars and bikes as he rode by.  And it was only $10 a kid and $5 for siblings.  Parents are FREE!!  It was a blast.  Plus admission is all day so we went and had lunch then went back to play some more.  Afterwards we dropped the boys off at Mama and Papas and had some adult fun.  We headed to the movies and watched This Means War.  I loved it. And I also completely embarrassed myself when I gasped "WOW" at one of the guys on screen.  Loud enough for the whole theater to hear, as I was holding my husbands hand.  I'm so going to hell for that.  To my defense, 1) his eyes were stunning 2) I haven't been to the movies in a long time and thought I was at home.

Monday we slept in and did some deep cleaning before David had to get Melisa from work. That's about all I remember from yesterday actually... probably not a good thing.  Oh we washed the car!  And I found out that a Mr Clean eraser works magic on the car too!  There was this stain on the front of the van, looked like a splash of chemicals.  Its not there anymore!  YAY!  David asked what was in the thing.  I told him little alien scrubbers.

I am just rambling on here.  I think this is mostly for me to remember the weekend, so if you made it this far, sorry for going on and on like that!

Liver Clinic tomorrow.  Got a call today from the Transplant Institute reminding not to leave until I get labs drawn so they can check my MELD score.  I have people asking what that is exactly so I will write it all out in another post.

Until then, I hope your weekend was as fun as ours.  And that you all have a wonderful week!

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Whoosah

There is nothing worse than waking up in a panic.  I couldn't breathe, my heart was racing and I felt like throwing up.  Why me?  There is a question I try not to ask very much.  But today..."why the hell me?"  I feel sorry for my family, because when I am like this, I get all pissy, and then I cry and I'm so awkward.  Yes I know these things but I just cant help it.  But why on the weekend.  Supposed to be fun and free.  Instead I feel like if I leave the safety of my own room I might jump someone.  I hate this part of me.

I though if I plugged in my headphones and listened to some music that would help.  So while everyone else was sleeping I laid there looking for some feel good music.  Of course I took a wrong turn at Pearl Jam and Just Breath, a U turn at Bruno Mars and Count on Me.  Slowed down at Lynard Skynards Simple Kind of Man and Wrecked on Johnny Cash and Hurt.  Lord help me to get though this day.  By the time David was leaving for work, I was crying and I didn't even know why.

I picked a fight this morning I knew I wouldn't win, the boys are extra feisty today, I over cooked my lunch and stubbed my toe on a box I meant to move last night.  And I still had one thing let to do.  Apologize to the Mr for being such a punk earlier.  But since he is working, my text went a little something like this.  "Sorry for being such an ass babe. My emotions are so messed up right now that I cant even think straight.  Been trying to keep myself together, but I guess I suck at that too."  Of course after I hit send, I wanted to smack myself for not giving myself enough credit.

I am doing the best I can with the life that was laid out in front of me. I know that I was chosen for this life for a reason. And I know that it is a challenge I can win. From my boys I learn patience, from my husband I get my strength and in all of you I find hope. I am who I am.  No where near perfect.  But I'm here.  Every day I wake up healthy enough to enjoy with my family is a blessing. I need to remind myself of that sometimes.  Forget all the negativity and little things that are driving me crazy and look at the big picture.

Now that I have that off my chest, I hope you all have a wonderful weekend.  Hug the ones you love extra tight.  Much love! Woosah

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S is for Spring and Scope.

**Warning!  Following this post is a graphic photo**

Its almost spring, and you know what that means right?   Flowers, bunnies and the inside of my esophagus.  What?  That isn't what spring is to you?  Damn.  Guess it must just be me.  Every year about April I have an endoscopy done.  Its so routine now that I actually look forward to it.  I don't mind the sleepy juice and for the most part always wake up feeling rather refreshed.

Why do we do this every year?  For something called varices.  As it was explained to me, when blood flow to my liver is slowed, that the blood can get back up and sometimes it gets back up in small blood vessels in the esophagus.  Causing varices.  If one of these were to rupture, I can expect to vomit blood or have blood in my stool.  Sounds really pleasant, I know! So in order to be one step ahead of the game, I am monitored to make sure I don't have any.  They also measure the pressure in my portal vein, because the risk of a bleed increases with added pressure. I am so thankful to have both neither varices or portal hypertension!

The coolest part about it all, is that they give me pictures.  And so if you have ever wondered what the inside of my esophagus looked like, today is your lucky day.  I find it rather fascinating, but some might want to hurl!  Be warned!  And to some it may look bad, but last night I saw a photo of an esophagus with varices. Big difference than this!
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