Absence make the heart grow...

I know they say fonder, but it just makes mine lonely.

The boys went with their grandparents for a two night visit to family. 6 hours away! I was so exited for them! And a little nervous too. My oldest is 5 and still has some separation anxiety. And the baby still nurses at night. He's almost 2 and its only for comfort. I knew they would be fine.

I used this as a test to see how well they did with out me. I'm always worried that without me their lives will be put on hold. Not because I think I'm so fabulous, but because I'm their mom and I'm supposed to be here for them always. But in my case, its just not possible. So in the anticipation of the many hospital stays in my future, I sent them on their way.

David had to work the first two days, so here I was...alone. I took a shower with out anyone banging on the door. I also sung like a dying chicken in said shower. Why not, there was no one to hear me right?! I ate with out having to give bites to boys who said they weren't hungry but were starving as soon as I sat down to eat. And I talked to both of my sisters. Without distractions. For 6 hours straight! Both days:)

Tuesday night I wasn't feeling well so David bought me the new Twilight movie and I camped out in bed with my feet propped up They were swollen.  Wednesday night we rented 3 movies. I only managed to stay awake for 1!  But I slept so good that night! Come Thursday, I was missing them so bad my stomach was in knots. I missed the way the baby yells for me and the random hugs Anthony gives me. And strangely enough I missed the craziness of my life with them. It was boring and lonely.  A little time apart was just what I needed to refocus on the good, accept the not so good and spend some much needed alone time with my husband!

Today is Christmas Eve. I'm beyond excited to spend some time with all of my guys today! I've been up since 6 am and they are all sleeping...

**I wish you all the Merriest Christmas!  I hope you are all surrounded by family and friends!  Please say a prayer for those who aren't able to be with theirs.  My brother and his family who is spending yet another holiday apart. We miss you Leon and are so very proud of you!**

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More Bad Blood

Because of my blood disorder, I am on blood thinners to prevent another clot. Last week was my routine monthly PT-INR check for my hematologist. Afterwards we made a few stops so I could get the final stocking stuffers. When we got home, there was already a message from the Dr. This is never a good sign. So I called him back and he told me that my INR was 3.6. I'm usually around 2.1. So this was a big change. He asked me to move my doses around so that I would be taking 9mg 4 day a week and 10mg the other 3 days. And I was scheduled to go back in again in a week. Fast forward to yesterday. Same routine, went in, got my labs done, came home and no message! Woohoo! NOT! Got the call around 4. I'm at 2.8. Still a little higher than my Drs would like. So now we are dropping the 10mgs and going 9mgs all week. And in 7 days, I will be back in there getting stuck again. Thank God I got over my fear of needles when this all first started!
So what does 2.8 and 3.6 mean? I don’t usually explain things because there is a 90% chance Ill screw it up, but here is how it was explained to me.

PT= Prothrombin Time. It is a measure of how quickly blood clots
INR= International Normalized Ratio. Is the standard unit of measuring the PT.

Being on blood thinners means I am monitored closely to make sure that my blood isn’t to thin or thick. The average range of someone not on blood thinners is around 1. I am usually around a 2.1 or 2.3. So anything above 3 is cause for concern. As my blood gets thinner my risks of bleeding get higher. So things like bumps on the head, falls and cuts are much more dangerous. And for those of you that know me, those things are kind of my thing!

My INR also changes my MELD score, which determines my place on the transplant list. As my liver disease advances, my liver has a harder time processing my Vitamin K, there for causing my blood NOT to clot. And that means a higher INR. And a higher MELD.

The last time I got to see my labs, both my bilirubin and creatinine were at 0.6 and my INR was 2.4. This game me a MELD score of 16. When my INR is at 3.6 that bumps my score up to21. But being on blood thinners means that unless there is a change in my bilirubin or creatinine then my MELD wont change much because its being controlled.

So here is to turning yellow from jaundice (bilirubin) and my kidneys giving out (creatinine). I joke about it, but its really what I am waiting around for. Eventually something has to give right?

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It feels like...

Lots of people ask me how does it feel.  How does it feel physically?  How does it feel to wait for a liver?  How does it feel to know your only going to get sicker?  Lots of hows! 

Physically it hurts.  Having Budd-Chiari Syndrome means I have clots blocking the returning blood flow from my liver to my heart, blood has back up in my liver.  And once that was full, it started filling up my spleen. It feels congested.  Its kinda like being pregnant and feeling like your about to pop.  Or for those moms that carried babies high up, where you were sure your ribs were going to crack open because there was just no more room in there.  Yeah kinda like that.  My abdomen is sensitive.  Some days more than others.  Sitting is uncomfortable and Laying down can be even worse.  When I If I cheat on my diet, my good friend Ascties knocks on my door,  Or stomach I should say.  Fluid builds up in my stomach and makes me look 7 months pregnant.  I really need to stop that.  And sometimes my body aches from fatigue.  You know how you feel after the flu?  That, Ive been hit by a truck feeling. That's how I feel most days.  I also take a medication for my H.E that makes me go to the bathroom pretty much all day and its like having a stomach bug every day all day.  Draining, no pun intended!

Waiting for a new liver is frustrating.  You want to get sicker to be able to get your transplant but at the same time you want to stay healthy so that you don't get sick.  I will only be able to have a cadaver liver, so that puts the added pressure of knowing someone will die so that I can live.  Then there is the rules.  Call if your fever is over a hundred or you get sick.  Don't go our of town or anywhere unless you can make it back here in 2 hours. I count the days, week and months as they pass.  I constantly check the OPTN data reports to see how many people are waiting with me.  I try to pass my time by spreading info and organ donor awareness.  It makes me angry that there aren't more donors.  It makes me sad that people die waiting.  It breaks my heart. 

I'm not sure if the wait for a new liver is worse than waiting to get sick.  They kind of go hand in hand.  Any hope of a liver transplant rests on how sick I get.  How I feel now is nothing compared to how I will feel when the time does come.  I don't wan to get sicker, but I know eventually I will.  One day I will wake up and notice my eyes have turned yellow and jaundice has set in.  Or maybe the bloody vomiting from ruptured varices will be first?  If I were to miss a dose of my blood thinners I could throw another clot, this time maybe in my brain or lungs.  Or maybe my ammonia levels will spike and and I will slip into a coma.  So how does it feel to know that these are all possibilities?  Its scary!  It keeps me up at night and it makes me cry.  But its the life that was laid out for me.  Its what I have to go though to get to where I want to be.  Alive

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So now Im a dog?

"When you feel dog tired at night, it may be because you've growled all day long. ~Author Unknown"

Last week was the another rough week.  First the boys got sick. Then my MIL.  Then Friday, David actually had to leave work and come home.  He was in bed for 24hrs.  And when he wasn't in bed, hes was puking his brains out.  I was pretty sure we would make a trip to the ER in the middle of the night one day or another, but thankfully, everyone survived. Looks like there is a 24hr bug going around the house.   The saddest thing of all was the night the baby was sick.  First he came to me and demanded to go into the bathroom.  I though he wanted to get into the cabinets, so I redirected him to his pile of toys.  He kept insisting on going in there.  Eventually he projectile vomited on me.  So I go running into the bathroom to get a towel and when I turned around, my baby was holding on to the toilet for dear life.  I realized that hes paying attention more than I thought.  Hes seen me do it countless times.  All night he kept running to the toilet, vomiting and would say goodbye and flush.  I felt proud at how grown he is but guilty that he has seen so much at such a young age.  If Anthony were to see someone shooting up, he would probably ask them if they used an alcohol swab to clean the area first.  Or if they wanted a band aid.  He used to insist on sitting with me when I did my own Lovenox injections. 

So back to the quote...

This whole week I have got pretty much no sleep.  And God was I a dog.  I'm sure there is another word for it though. ;)  I was snappy and angry.  Every little thing would set me off.  I knew I was being so out of order.  Then Saturday night Anthony brings me his little sketch pad and says" Look momma, this is you with an angry face!  And this is me with a sad face."  I went straight to the bathroom and cried my eyes out.  Who am I?  I have always been the calm and collected one and for the past few weeks I have even been getting on my own nerves. 

This morning I woke up to a text that read "Hope you are sleeping well my love."  It was 9:30 in the morning and I went back to bed and slept until 11am.  Just what I needed to clear my mind and set me straight.  Today was a wonderful day.  Took FIL out to lunch for his Birthday.  I had steak and lobster.  Of course because In didn't take my meds this morning, halfway through grocery shopping, I was only half lucid.  I had to focus so hard just to get though it.  But I made it though the whole day with out raising my voice or arguing with anyone!  YAY go me.  And now I'm just excited to get on with the new week!  I am going to be trying my best to keep my cool and go with the flow.  I have always prided myself on being the best wife and mother that I can and the last few week I have failed. 

"We plant seeds that will flower as results in our lives, so best to remove the weeds of anger, avarice, envy and doubt... ~Dorothy Day"

**Warning-If this doesn't make any sense its because of the damn steak.  Red meat = H.E episodes.  But it was soooo good!  All done with red meat for the week though! **

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What do I think?

So I had my visit with the psychiatrist on Tuesday. It actually went OK.  The very first thing he said to me was "I knew who you were the second I saw you!"  See, he works with my transplant clinic and goes to the meetings they have, so he had heard about me.  The young woman who was pregnant when she was diagnosed with Budd Chiari Syndrome and who had recently been put on the transplant list.  Yup that's me :)

What I wasn't aware of was how much he knew about transplants, liver failure and all that good stuff.  It was nice not having to explain my conditions and why I felt the way I do, because he knew it all already.  And I actually learned a few things.  Like why my coumadin dose is so high.  And we also talked about all the other things you would expect.  My family, where I grew up, the boys and so much more.  He said he could really tell that I miss home and its so true.  Ive been so homesick lately. 

One of the questions he asked me was if I though I was depressed.  I am seeing him because of Anxiety and "depression".  I told him that I  have been there before and this was not it.  I explained that I'm not depressed about what I'm going though I just think it really sucks. Plain and simple it just sucks.  The best part is, he agreed!  See I'm not crazy!  The longer I wait the more bad days I have.  But I know if I sit back and focus on how bad things are or are going to get, I'm not doing anyone any good.  I have so much to smile about, so much to be proud of and so much to do still in life.  So as sucky as it seems, I gotta just keep on smiling and doing what I'm doing. 

He told me that judging by the amount of Coumadin I am taking, my liver is having to work really hard.  And he explained to me how that means that things can go downhill in an instant.  That is why I should stay close by.  He gave me something to help me sleep at night.  I'm a little uneasy about talking anything, but after I clear it with all my Drs, I will give it a try.  Hes and I both have the same idea on where the anxiety is coming from.  His reccomentdation, to move out and get our own place.  Funny thing he mentioned it before I did, so I know its not just me!  Guess we better get on that!

Anyways, that's that.  I have a few other post I'm working on, but honestly they sound to depressing! I'm in search of a little inspiration.  The happy kind :)  Much love to you all! 

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