Wait with me

Checking out the numbers this morning.  Its amazing how much they have gone up since I was listed.  And by amazing, I mean horrifying!  Here is the company I'm keeping.

Right now, waiting for a liver, there are:

16,071 in the US
2,083 in Region 4
1,832 in Texas
107 at Methodist

How many with Budd Chiari Syndrome like me?

106 in the US
6 in Region 4
5 in Texas
1 at Methodist <--that's me!

How many people are in the same19- 24 MELD range as I am?

1,662 in the US
251 in Region 4
224 in Texas
21 at Methodist

To most of you, these might seem like just a page full of numbers.  To me, its both hope and sadness.

Hope because I see my self slowly making my way up the list.  Little by little.  I know in my heart that this transplant is going to change my life and let me get back to being me.  One of these days, I will be one less person on the list.

Sadness because the numbers keep going up.  More and more people need transplants and there are not enough donors out there.  There are 113,594 people out there total waiting with me.  My heart breaks for them and their families.  As this is no easy journey for any of us.

Please if you haven't already, register to be an organ donor.  What greater gift to give than the gift of life?  Click the tab up top to learn more about organ donation and register!  It only takes a few minuets.

Read More

Overwhelmed

Be warned, the emotions are way out of control.  I have managed, to be angry, cry, laugh till I almost peed myself and worry all before noon.  I guess I get 6 whole hours of sleep and my world starts spinning in overdrive.  But its Friday and I am hoping this weekend will calm this storm inside me.

For starters, we are sending out the second batch of {Hope for Kim} bracelets.  And pictures are popping up all over FB of people rocking their shirts and bands and other goodies.  Its amazing the support I have.  I am so greatly blessed and want to thank you all for always being a constant provider of strength and hope to me.  When I say I could not have come this far with out you all, I say it from the bottom of my heart.

I've written a few letters this week that were hard to write.  And while I hope they help I am always worried that I will overstep or hurt someones feelings when I am just trying to let them know how I feel.  One of the letters was to myself.  And I even managed to hurt my own feelings.  So I'm hoping that I didn't offend anyone else.

I think a lot of it has to do with the changes that are going on here.  The boys are growing up so fast.  They used to be just little babies who were so dependent on me.  And now I depend on them.  They keep me going.  The other day, Anthony could tell that I wasn't feeling good and offered his hand to me so he could help me get home.  Most days he is a typical frustrating 6 year old, but moments like these remind me that he too has a lot on his plate and I realize that my health is a factor for a lot of his actions.  The other night I carried Alexander to bed and couldn't help but cry. Hes so big.  It seems like just yesterday I was pregnant and unknowing of the journey that lied before us.  My saving grace.  If left untreated most people with Budd Chiari Syndrome will die within 3 years.  Alexander turned 3 in January and I would not have known I was even sick if it weren't for him.  After years of trying and fertility treatments, we had given up hope.  When I say hes my saving grace, I mean it.

Cancer is running rampant.  Not only in my family but my friends as well.  My sister in law is fighting Crohns Disease and along my journey I have met many friends who are also struggling with other various illnesses as well.  The world is full of horrible and sad things.  And today they all just seem to be to much for my heart to carry.

Its not all bad.  I can't forget about the good.  My little brother is having a baby.  And while it seems almost impossible...Its a girl.  Tears are going to fall today.  Some happy, some sad.  And hopefully I will be back to my stable self.  Because I'm not the emotional type.  Maybe on paper but not so much in real life.  Breath with me now...

Read More

Almost normal

It a world full of ups and downs a day like yesterday was so refreshing.  Most days I barely have the energy to run around out side with the boys.  I think after a whole week of a cold, I finally caught a second wind.  Well it was sorta a sad wind, surely it was no storm like the one we had last night anyways.  But I had energy!  Got some cleaning done and even had some good fun with the boys.

I saw a video a while back where a guy was showing his sons how a water bottle could suck in a hard boiled egg if you rinsed it out with boiling water first.  Our egg cracked while it was boiling, so it didn't come out perfect, but it was cool to see and Anthony was still talking about it this morning. Sorta.  He asked if the toilet water was hot and if it would suck him in if he sat to long!  NO son, the toilet is safe!

While dinner was cooking we went out side to melt our "ice balloons".  I had stuffed a bunch of random things in balloons and froze them.

Ice Balloons

Who is more excited?  Alexander or the dog?

Hey look!  There was money in the ice!

Notice Chico circling the boys like a shark?   All he wanted was a lick!

I promised the boys we would do more experiments.  So I am going to be popping over to Pinterest in a bit and see what I can find.  Here is to hoping for more normal days.  More playing, less complaining.  Yup, days like yesterday remind me that no matter how tough life will get this is what I'm fighting for!  I love these guys more than anything else in the whole world. 

Read More

Coming up next...

Earlier today I got a call from the hospital.  This time I recognized the caller id and I was told to always answer any calls from the hospital so I picked it up quickly.

The lady was calling to remind me that I need to have my labs rechecked because they expire on the 23rd.  I was confused because I just had an appointment on the 22nd and had my labs done them.  She explained to me that because my last MELD score was a 22 and that number is "getting up there" I need to have my labs rechecked more frequently.  So it looks like I will be making another trip up to the hospital.  Good thing its in town.

I'm pretty sure that my score will take a drop too.  At the time my INR was a 4.0 which is high.  And I just had labs done for my hematologist and he said that I was therapeutic, so I know it is between 2 and 3.  At least now I know why my arm sprung a leak when were were leaving the clinic!

Next week I go in for my appointment with my Hematologist.  I have a few questions that I need to ask too, so I'm anxious for that conversation.  I am going to check my blood pressure today and see what it is.  I'm worried about the blood flow to my heart.  I have read that low blood pressure is often caused by a decreased flow to the heart.  And now that I know my IVC is clotted off too, I think I have a right to be worried.  Can a heart dry up?  That's what I dream about at night!  So I need to check and make sure that isn't going to cause anymore problems for me.  Is is bad that I no longer feel that rush to get my questions answered.  A few years ago I would have been calling doctor after doctor to make sure everyone agrees.  Now, a few weeks wait doesn't seem so bad.

Next month I have my endoscopy to check for varices and portal hypertension.  Hopefully everything is good down there.  With this horrible cough I cant imagine its pretty down there.  Good thing its a month out!  I just hope that they give me pictures at this place too! It used to be that my GI Dr did them, but he has been phased out and as far as my liver goes, its all up to my transplant team now.  Sounds good to me.  Actually I'm looking forward to it.  David took the day off and will get to take me.  I hate going under when he isn't there.  Even if the whole procedure is under 30 mins.  But I feel that much safer knowing he will be there when I wake up.

Read More

I'm alive

It has been a horrible week in this house.  My oldest has horrible allergies.  And gets sick if someone even thinks about coughing in the same room as him.  He stayed home the last 2 Fridays.  Its like he can make it up until Thursday and then crashes.  Come Friday night and the little one started coughing. By 4am Saturday, I was hacking up my lungs.  

So I missed my volunteer class.  I feel so horrible too!  I really hope that they understand.  But I figured they would be more thankful that I stayed home to cough my lungs up than to do it in a room full of transplant patients and their families.  One of the ladies had just called Friday afternoon to confirm and so that made it worse.  I called and emailed the lady who invited me, but haven't heard back yet.  

Its Monday now and my head still feels like its going to explode.  There was a schedule mix up and Anthony was never put in the system so we took a trip out to the hospital for nothing this morning.  We are going back tomorrow.  I'm pretty sure we all have the same crud, but with his Allergies, he is the worst off.  So he gets first pick.  

I haven't been this sick in a while.  Sick as in a cold.  My body is trying to give up on me, but I think I am winning so far.  David will tell you I was whining like a baby the other day.  I threatened to go sit out back and wait for the lightening to put me out of my misery, but it stopped storming before I could drag my butt out of bed.

Spring Break is a bust so far.  I'm hoping that we all get better fast because the weather is amazing outside and I'm hoping to soak up some sun.  This island girl is has lost her glow.  But first I need to lose this cold!  

**Just talked to the Mr. who said he is getting sicker by the hour and that his Day Quill isn't working.  Lord help us**

Read More

Mom Fail: Letting it out!

Most days I feel like I am doing this parenting thing pretty well.  My boys are healthy and smart.  They are kind and considerate.  They have infectious laughs and their smiles melt my heart.  But I guess you can't win every day.  Today I failed.

On the walk home from the bus stop, he jumped in to the road.  I told him that he knew better and than he would lose his computer privileges if he did it again.  But before I could explain he was back on the street.  We have a well knows rule that feet are to never leave the sidewalk unless you have an adult with you or mom or dads permission.  This was followed by a mini fit.  I continued walking and waited for him to finally decide to move.  It was just a few houses down.  He came up with eyes full of tears and so I explained again that kids are not to go in to the street.  And that its for his safety.  Of course I got sass back so I sent him to his room to chill out.  Because talking back is also unacceptable.

As I was changing a letter was slipped under my door...

You make me feel like I am not in this famaly.

You made me feel I like I am so dome :( alone!

You made me feel like I am so mean.  You are to me:(

See.  Failure. I know in my heart that it was not as horrible as he made it out to be.  He broke a rule more than once and he knew his consequence.  For the most part, No means No and I can stick my ground, but this letter  just about brought me to my knees.  Breaks my heart that he said I made him feel dumb.  That word isn't even in our vocabulary!  So he crossed it out and used a different word. 

I had planned on talking to him before bed. But he fell asleep on me.  So we will do it in the morning.  One thing we have always talked about was that good our bad, we all have emotions.  Sometimes we feel sad, happy, angry or afraid. But we always love.  And that he can always talk to me about them.  But to have him write this out to me...I don't know how to describe them pain it brought me.  

Ever since I was a little girl, writing is how I got my emotions out.  Dad could tell you stories about the letters I wrote him.  Sorry Dad!!  But I was had enough conflict in my life so to avoid adding more, I left notes.  Always writing.  And it looks like I have passed it down.  I know exactly how hes feeling and it breaks my heart.  I don't ever want him to feel like that.  EVER.

What did I do wrong?  What did I do right?  Do I encourage him to keep writing his feelings if it is easier on him?  Or tell him next time to talk to me face to face?  I feel like I broke him.  I'm sure there will be worse down the road.  But that the same time, I am happy he is able to express himself.  No yelling or back talk, but it a letter.  Is that wrong?  I've got a sassy 6 year old and a tyrant 3 year old.  Everyone keeps saying it only gets better, but I'm pretty sure there is sarcasm in there.  

Maybe this is all a bit to personal.  But like I said.  I have to write these things out.  Usually I eventually answer my own questions, but I'm lost here.  

Read More

Here WEGO again

I know March has only just begun, but I'm already planning for April. The Health Activist Writer's Month Challenge is hosted by WEGO Health.  I will be writing a post a day for 30 days.  And I hope some of you will join me in writing everyday about health.  Its going to be a lot of fun and I would love to see what you all have to say about the topics too.  All you have to do is sign up here:

http://info.wegohealth.com/HAWMC2012 

I excited to see what the writing prompts are this time.  Sometimes I feel like I'm just rambling on about the little things that I really could keep to myself.  So hopefully this will help get my brain working and I can share more with you about the reason I started this blog in the first place.  My Health!

Read More

I'm no superwoman

This week was a hard one to get though.  It started out with my little one covered in hives.  And ended with an angry 6 year old that had to be kept home from school because he was sick and he didn't want to miss his spelling test.  Add in long hours for Dad and one over tired and very weak mom.  It wasn't our best week.

Every morning getting out of bed is hard.  But this week was different.  It took everything I had to get out of bed.  Breakfast was cereal all week.  We got up later than normal and ended up rushing.  Even though I cant drive him, I go with my mom and drop him off at school.  I get one last hug in before he is off doing his thing in school.  At least I managed to do that.  But once I got home and until it was time to make dinner, I was in bed. Watching movies, reading, sleeping.  I just could not do anything.  My body quit on me.

Last weekend, I told myself I needed to cut myself some slack.  After chasing the boys around the park I was winded and dizzy.  I haven't gone on a run in 3 weeks because of this, but now something as silly as playing with my boys was to hard.   That afternoon I had a good cry and then decided I needed to accept this.  This is my life right now.  Someday its going to be so much better but for now, I'm going to slow down a little.  And boy did my body need it.

Today was much better.  I even managed to get some laundry done.  Go me!  And hopefully tomorrow will be a day of rest and on Sunday we are going to be downtown for Siclovia.  I had planned on taking the bikes, but I think I will have to settle for just some walking.  A wheelchair would be nice but I think I can handle it.

Here is to accepting my health.  Trying to make the best of it.  And loving myself though it all.

Read More