Doctor Diaries: January Follow Ups

OK,  It has been one hell of a week.  But it's almost over.  And then we are starting all over again, but I will gladly take a few days of no doctors.  I need to breath.  And plan.  And process everything this week has thrown at me.  I also need to stay off the Googles until I have an actual diagnosis or at least some more answers.

I usually kick the year off with a bang.  I try to get as many of my follow ups over with for the first half of the year.  Most are 4-6 months apart so it works. Lab work is more often.  Usually monthly if everything is good.  Sometimes its weekly or every couple of days when it is really off.  This week it was labs for 2 doctors and 2 doctor visits.  And it went a little something like this.

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Liver Clinic Follow Up

I had my follow up at the Liver Clinic on yesterday and it looks like we are ending this year on a high note!  The doctor was happy with all my recent lab work and scans. We talked a little about everything, I got my flu shot and we were on our way!  But I thought I would share a quick little run down for those who wonder what these appointments are like.

I got checked in and they gave me my hospital bracelet. The hardest part of my appointment is always the waiting to get into a room.  We are supposed to arrive 30 minutes early but it usually takes a good 45 minutes before you are called back.  And there were quite a few people there this morning so I knew it would be a little wait.  As long as I have been doing this, I still get a little antsy while I wait.

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Friday Five: 5 questions I get asked about my liver disease.

When people find out that I have a liver disease and I am on the liver transplant list the questions start rolling in.  Here are a few of the more common ones that people ask.

How did you get it?  

My Budd Chiari Syndrome was most likely caused by a hereditary blood disorder that I did not know I had. It causes my blood to clot easily.  It just so happened that the clots formed in my liver. There is a chance that I have had Budd Chiari since before I was pregnant with Anthony.  My father was tested and he too had the blood disorder (Prothrombin Gene Mutation G20210A). My siblings have a 50% chance of having it.  As do my boys.

Can't your liver just heal itself?

Yes the liver is the one organ that can regenerate itself.  When someone donates a part of their liver to another person, it will regenerate given time to heal itself.  For me, there is no break from the damage being done.  Scar tissue is building up and my liver is not able to reverse that damage.  

Are you scared? 

Hell yeah!  Plain and simple.  Being told that I could go from feeling great to a coma in a matter of hours has put a fog of fear over me. Honestly, not a day goes by that I don't think about it.  Every sharp pain or cold has me worried.  But I do my best to push aside the fear and I choose to live each day the best I can.  In the beginning, I was more afraid.  Add a high risk pregnancy and 5 doctors, yeah, I was a hot mess.  When he was born healthy, I was less afraid.  Now, I am able to deal with the fear so much better.  I know more and am more in tune with my body.  I'm not as afraid now, but its always gonna be there.

What is the cure?  

The only "cure" for Budd Chiari Syndrome is a liver transplant.  For me a living donor is not an option.  So I will have to wait for a cadaver donor.

How long until you can have a transplant?  

I have been on the Transplant list for over three years now.  And I have been pretty stable so unless something happens my guess is that its going to be a while.  My doctors have told me that as my liver weakens my other organs will be stressed.  And that eventually one of them will start to fail as well.  There is no way to tell if it will be my heart or kidneys, but that is their guess.  My MELD score has been in the 16- 19 range for the last year. With the highest score being a 40 and  the huge shortage of registered organ donors, who knows how long it will be.

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Updated MELD score

I have received others like it.  This letter.  It didn't matter though! When I saw it in between some other envelopes, my heart still stopped. Now that I look back, it is silly that I got so worried.  I tucked it into my purse and it took days before I could get the courage to open it.  I don't even know why I was so afraid.  It just looked scary.  And it was light.  Most letters I get from them are pages full of orders for my upcoming tests and appointments.  But one little page... I panicked.  Want to know what it was?  Orders for labs so that I could take it to the lab closer to home and would not have to go down to the Transplant Clinic.  Yup I was afraid of nothing!  Seriously.  What was I thinking?  Well actually I was worried they were going to tell me I was off the transplant list.  Or that there was something else wrong.  What can I say.  I'm a worrier.

So I got my labs done.  And the best part was, that I went ahead and had labs drawn for my other doctors as well.  No sense in getting poked again in a few days right!  After a few days of waiting, I got the call that I was waiting for.  No, not "the call"  But my nurses calling me back with results!  My MELD score is 19.

What does that mean for me?  Not much.  My levels are all pretty much the same.  They have all went up only slightly.  Now its more waiting.  I remember hating this part.  Feeling let down that my score wasn't going up. These days I am feeling even worse than I did back then but I have learned to be thankful for the health that I do have.  For me that means more time with my family and out of hospitals.  I am blessed to have made it this many years as healthy as I am. 5 years I have been fighting and I don't plan on stopping now.

We all know that sooner or later something has to give.  The pain is getting sharper and it lasts longer.  My fatigue is only getting worse.  And my mind is slowly slipping.  Yes, it makes me angry.  Yes, I have days where I just want to give up and get depressed.  Mostly I worry about how its going to affect my family. Eventually the day will come where I can't do the things I have managed to do this far.  I've had more bad days in the past few months that I had all year last year.  My feet swell while I am cooking dinner and I forget what I am doing.  My hands flap and cramp when I play cars with my son.  And I can't type with out taking many breaks.  Not just because of my hands but because my mind just wipes it self clean every few minutes and I have to re read what I am writing about.  I find myself  spending less and less time on the computer and my phone.  Crazy I know!  Even holding a book and trying to focus on what I am reading is exhausting.  I spend every minuet reminding myself where my boys are and what they are doing.  I constantly second guess myself and beat myself up over my mistakes.  But at the end of the day and more so with the start of every morning, I thank God for every day I am given here at home with my family!

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It takes 5 minutes to save a life!

Last week I was honored to have the chance to talk with David Fleming.  For anyone who doesn't know, David is the President and CEO of Donate Life.  And organization very dear to my heart and liver!  May 25th will mark my 3rd year on the liver transplant list.

Most of the conversation was based around the results of a survey taken recently to help determine just how well the public understands organ transplantation.  When broken down in numbers, the results are unbelievable.  I will have to cut this into a few post, but I just have to start with this!  Do you know how to register to be an organ donor?

Sixty percent of the respondents were familiar with their state’s donor registry. BUT... 48%  agreed that they really don’t know how to register.  Forty Eight Percent!!  Almost half of the people!  So to keep this short and sweet, here is how you do it!

First go to the Donate Life America website here -----> DONATE LIFE and you will see this!

It will take you a whole second to push Register Now.  And hopefully only a few more seconds for this page to load! All you need to do is select your state from the drop down menu or just click on it!  Easy stuff here right?  

Just hang with me for a few more minutes.  After you click you will be brought to your states Donate Life page.  For Texas we get straight to the point.  Some of the other states you have to look for the "Register Button"  But you have come this far, don't let that extra step stop you now!  Click it!!  Fill in your information and submit it.  I promise you that the chance at saving a life or 8 is worth the few minuets it will take you to fill it out and become an organ donor.  

Now that you have done this here are a few more ways to make sure your wishes are carried out.

• Talk to your friends and family about your decision to be an organ donor.  And encourage them to register too!
• At the DMV, let them know you wish to be an organ donor.
• Let your doctors know that you wish to donate your organs.
• Make sure and include your decision to be an organ donor in your advance directive and or your wills. 

Please share this if you get a chance. The 118,102 people on the transplant list would be very grateful!  If you haven't registered yet, could you tell me why?  There are so many myths about the whole process so I would love to help clear them up for you.  I have a new post coming soon on all the reasons people don't register.  So I would love your input!  

Big shout out to David and all of the people at Donate Life who do all that they can each day to help support and grow an organization that is saving lives.  Thank you for reaching out to me and giving me this opportunity.  I look forward to talking again soon!

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My first "live" Q&A!

I always tell myself that each month I have to step out of my comfort zone at least once.  Do something different and new.  Something that gets my blood pumping.  That's always a good thing right?  So when my friend Cody asked me to speak to her class, I agreed.  Let me just say, nervous doesn't even cover it.  Cody and I went to school together.  She looks exactly the same too!  Just for fun, here we are.  Class of 2000!!

I sat here for 30 minuets trying to pump myself up and calm my nerves.  It was so much easier having a familiar face there when the video started.  I may or may not have laughed way to much, sorry guys, I'm a nervous laugh-er.  Its laugh or cry for me.  And I wasn't about to cry.  Thankfully there was not as many people as I was thinking there would be and I actually had a lot of fun. I hope it helped them.  I know it helped me.  Someday I want to be able to stand on a stage and tell my whole story with out feeling sick to my stomach.  I can write it all out here but once there are people looking back at me, my palms start sweating.  They had some really good questions though.  And I answered the best I can.  

It also reminded me that I started this blog to share more about my life and what its like living on the transplant list.  I've been horrible at that.  But I'm refocused and ready to roll.  Next month is The Health Activist Writer’s Month Challenge.  So I have already started my 30 posts for the month.  Plus a few other fun things, so I will be hanging out here more often.

I wanted to take some pictures while I was talking, but I also didn't wan to look crazy.  If anyone on the other side got a picture of me I'll trade you for a Hope for Kim Bracelet :)  My sister got a shot of me though.  Thanks Bug.  And a big Thanks to Cody and the class for having me and for all the great questions. If you are reading this and think of any more, feel free to ask!

I hope everyone has had a great week so far, its sprinkling and gloomy outside. But its better than the cold that blew through the past few days.

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It's not just Valentines Day...

Today is February 14th.  Valentines Day.  The love going around today is amazing.  Flowers, Chocolates, and Candy are being given to wives and girlfriends.  Ladies, Did you do something special for the man in your life?  Kids handed out valentines at school.  Moms made heart shaped pancakes for breakfast and sandwiches for lunch.  Little love notes and surprises for all.  What is not to love about today.

But did you know that today is also National Organ Donor Day.  Oh, you didn't?  Well guess what, now you do!  Your Welcome!  

Tonight there are more than 117,167 people listed for a new organ.  And 15,770 of them are waiting for a liver.  I am one of them.  There are mothers and fathers, sons and daughters all just waiting.  Praying that someone had it in their heart to register as an organ donor.  That someone will have enough love in their heart to give them the gift of life. 

When I was first diagnosed, the first thing most of my family said was that they wanted to be tested as a match to be my donor.  I have had people I met through twitter or FB ask me if I would accept them as a donor if they were a match. And I even had one man leave me a blog comment, offering me a portion of his liver.  These people have so much love in their hearts that they are willing to save my life.  Well except for that man who continued on about a considerable fee. That was just awkward.  

So now that you are coming down off your sugar high, your flowers are placed in a pretty vase and hopefully your children are not to wound up to go to bed.  Take a minuet to thank an organ donor.  Or to say a prayer for all of us still waiting. 

And please, if you haven't already registered as an organ donor with your state, do!  If you are, Thank You!  You could be someones greatest hero.  You can save a life. Actually you can save more than one.  If you have any questions about how to sign up, let me know and I will do all that I can to help you out.

Happy Valentines Day.  Happy Organ Donor Day. 

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What is a MELD score?

Bloodwork for the Liver Clinic

If you have been following for a while you have heard me talk a bit about my MELD score.  And a lot of people ask " what is a MELD score?"  So I figured I will explain what it is, how its found and how if plays in to my life of the transplant list.

MELD scores from 6 - 40 and are used to measure the urgency of a transplant.  So the higher the number the closer you are to transplant.  The score is calculated by taking a look at three test results.  Bilirubin, Creatinine and INR.

Bilirubin is yellow pigment found in bile that is made by our livers and stored in our gall bladders.  As you liver fails the bilirubin is not properly disposed of and that is when jaundice sets in.  Causing the yellowing of the skin and eyes. A normal bilirubin level is usually less that 1mg/dL.  Last time I had it checked mine was a 1.4

Creatinine is chemical that is the kidney usually filters out of our blood.  If the kidney is not working properly, creatinine will build up in your blood. By testing the amount the doctors are able to measure how well, or not, our kidneys are functioning. Just like the bilirubin, creatinine is usually less that 1mg/dL.  My last labs show me at 0.72. No complaints there.

INR is the third.  This measures our livers ability to make blood clotting factors.  A higher number means that the liver is taking more time to coagulate or form blood clots.  In my case, because of my blood disorder, I am on blood thinners.  My INR is monitored not only by my transplant team but a hematologist as well.  It is also kept a little higher because I am prone to clot. The average range is 0.8 -1.2.  I am kept at 2-3.

All together, these 3 tests decide what my score is and define my place on the transplant list.  I have varied from 9-22.  Mostly because of my blood thinners.  Either way, I am not high enough on the list to be expecting a call any time soon.  Nor do I have any other complications that would  bump me up any.  So we wait.  Hopefully this helps some of you better understand what I'm talking about.  Hopefully I have explained it all properly.  I should take note from my liver buddy Ricki and give a general disclaimer to my hepatic encephalopathy! It makes my brain mushy!!

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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.

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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.

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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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Tears

"Tears are words the heart can't express” 

Its not news that I need a new liver.  I have know for 3 years now. And this week marked my first whole year of being listed on the liver transplant list.  When people find out they always tell me that its amazing that I'm still smiling or ask how I can say that with out bursting in to tears. If I don't laugh, I will cry.  And I hate crying.  I can count the number of times I have cried over being sick on one hand.  Never a major breakdown.  Until today.

I have had three years to soak it all in.  To accept the changes and come to terms with being "sick".  I though I had done it all. But this morning, I was filling out an application for the National Transplant Assistance Fund.  Its an organization that helps people like me who are waiting for or have had transplants raise money. Wait, who is having a liver transplant?  Oh crap, its me...how could I forget.  I didn't.  But all of a sudden it hit me.  My life is nothing like I had planned.  I am a 28 year old wife and mother who needs a liver transplant.  How did this happen.  I know how it happened, but it was like I was just finding out all over again.  Except this time with tears...lots and lots of tears.

Such a roller coaster of emotions. And all I can do is breathe through the tears.  Dry my eyes and keep moving forward.  There is no avoiding it.  So I am going to hit send on the application and pray that my "community" will be willing to help me.  And I also need to commit to helping my community as a way to say thank you back.  Brainstorming.  Beats thinking about having my insides ripped out and replaced. Seriously, have you seen the scar from a liver transplant.  I will have to get someone to share a picture of their scar on here for me.  Ooh I should do an interview :)

I seem to be back to my silly self, so I'm off to enjoy the rest of the day with the boys.  Thinking about going on an adventure tomorrow. I could use a little vacation.  Especially after a day like this!  Thank You all for your prayers and encouragement.  It means the world to me.  And if you got this far, God bless you for putting up with my rambling.  Promise to be back with something positive and happy!  Promise!!

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One Year

One year has passed.  One year I have waited.  One year.  I have been on the UNOS transplant list for a whole year.  Really?  I cant believe it. Emotions are over flowing. My mind is running a hundred "what ifs"  and "whens".  Its hard to explain really.

The hardest part about this journey is the not knowing.  I have been stable the whole time.  Never any major setbacks.  Like clockwork. I get my MRI and ultrasounds.  I have my yearly endoscopies.  And while Portal Hypertension and ascites have been brought up, they have not had to be addressed just yet.  I mix and drink my morning meds and every night my alarm goes of and I take the rest of them.  All pretty stable.  But.  I never know what tomorrow will bring.  If there will be a tomorrow.

Every few months, Anthony brings a bug home from school.  Starts with a cough, then fever joins.  Then Alex gets it...then David.  I must have a very good guardian angle, because every time, it passes on me.  I may get a sore throat, but never anything more.  Knock on wood.  But something as simple as a cold, could bring me down.  I was told to report any fever over 100.  See with my liver failing to do its job and filtering out all the toxins and other bad stuff, something so simple could turn in to something much bigger.  Every time I get a stronger pain, I wonder if time is running out.  When I look in the mirror at my bloodshot tired eyes, I pray for no yellow.  I dream about getting sick. I can feel my body getting sick.  But still they say I'm stable.

 I feel grateful to have made it this far so well.  I feel sad for all the people who have waited longer.  I am relieved to hear stories about friends who are doing great after their transplants and my heart aches for the few that are still sick after theirs.  I feel guilty for being listed when there are others who so desperately need help.  Somedays I feel like I could conquer the world and other days I wonder why me.  I'm frustrated that there is such a shortage of donors and I'm  embarrassed that I never though much of it until I needed one.

What have I learned from waiting?  I have learned that I need to put myself first.  If taking my medication makes me sick to my stomach, the I will have to schedule my appointments for later in the day when the effects have passed.  I am learning to say no.  I am trying to not be so hard on myself for not being able to do things I used to be able to do.  Ive learned to trust my instincts and to know my body better.  Its not easy, but there is no other choice.  This is my life.  And its not going to get any easier.  Ive learned to accept that, even if it took a whole year.

Who knows how much longer the wait will be.  But Ill be here, waiting.  However long it takes.  Fighting.  Living.


There are 111,344 people waiting for a life saving transplant as of today 12:14am tonight.  Are you a donor?  90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor. Stop by Donate Life America and register in your state!  And if you do, let me know.  One of my year goals is to get 5 people to register and I need 4 more :)  

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Back to the bottom

I'm coming up on my 1 year mark on the transplant list.  From the outside it seems like it was a breeze.  But on the inside I can feel the storm brewing.  I know this is just the calm before the storm.  Like back in FL when we knew there was a hurricane coming and everyone was at the store getting all their supplies.  Every one was smiling and playing nice, but if you looked closer you could see the fear in their eyes.  I put on my happy face.  I do what I have to do.  I live my life.  All while one little thing could turn it all upside down.

I had my hematologist appointment last week.  My INR is at a record low of 1.2.  And that's after a few days of being back on 10mg.  So now I am back up to my highest dose of 12 mg alternating with 10mg.  Hopefully this will help bring it up. The low INR makes my low MELD score make sense.  Right according to OPTN its <10, so I'm back to the bottom of the totem pole.  Not the greatest news, but I know it could be worse.

I kind of like it down here.  After all, I should be happy to not be so sick...right?  I am still "stable"  and all my other organs are doing good too.  I am so blessed to have this time with my family. I'm alive and living at home as comfortably as I can.  Sure beats being in the hospital.  Each day praying the Drs find my perfect liver.  But I also know that someday that will be me.  And I am so afraid of that day.  So for now I am just going to smile and be thankful for the health I have today. Today I am alive and that is worth celebrating. 

Here is to living life. Tonight hug your family and freinds.  Tell them that you love them and how much they mean to you.  Because tomorrow isnt promised. Life is a gift.  Live it then give it!

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Crazy much?

Well the rest of the week is doctors for me. Tomorrow I see my hematologist.  Hopefully my blood is good.  It was nice having a week off of labs.  Friday is therapist day!  Whoohoo!  Next week the little one has his 2 year check up and then I have the dreaded Liver Clinic. I shouldn’t say dreaded, because I really love my Dr and the staff at the Clinic are freaking awesome. Do you feel a “but” coming on?!?

But…This whole waiting game is messing with my head. If I’m going to be sick, I want to be sick now. I want to be fighting to get better, I want to know that getting better is an option. Instead I am waiting to get sicker. Waiting for my body to quit fighting for me, and hoping when I do get sick its not so bad that I cant come back from this all. I completely suck at waiting. Or does waiting just suck this much? I try to keep busy, but nothing helps. Sometimes I feel so alone and other times I feel like everyone is judging me. I'm pretty sure I’m going crazy.

The weather has been horrible, the boys are sick and cabin fever is setting in again. I cant drive. I mean literally, I don’t know how. And even if I did know how, thanks to my good friend H.E. driving is on my big fat do no do list. I’m feeling more claustrophobic than ever. I want my own space. OCD is kicking in and I want things done my way. Not easy to do when you are living in someone else’s home. Speaking of OCD, I have become obsessed with hand sanitizer. Did you know they make lotion with sanitizer in it? Why am I just now finding this out? Oh yeah because I have sanitized my hands to the bone. OK maybe not the bone, but they look dead. Dry, white and flaky. Gross
It’s a good think I see my therapist this week eh? I have so many things going on. I’m trying so hard to keep my head above water. But sometimes, it feels like there’s just no hope. I really need to get my camera out more. I have the sudden urge to go run. I’m jumping out of my skin here. Ok now I sound really crazy. Just going to stop here!
Here’s to hoping they don’t send me to the Looney bin on Friday! Hope everyone is having a great week.

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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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Wordless Wednesday: Im a donor :)



Are you registered to be an organ donor?  I know I have asked it many times, and I promise I will ask you a hundred more times.  Each state has different requirements, so make sure you check it out.  Tonight there are 10,445 listed for a transplant, in the state of TX alone.  Register people!

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Little moments

Most days it weighs heavy on my heart. That ticking time bomb inside of me. That feeling I get when my phone rings. That ache...that ache that never goes away. Every morning I wake up and wonder, is today the day?  Is today the day I will get a new life, a new liver?

Sometimes minutes go by and I forget about it all. But only minutes.  Never hours or days.  Today it was the few that I spent pushing my youngest around the house in a basket. There's something about hearing my boys laugh that make all my worries, fears and negativity just disappear. They give me hope that everything will be ok. Funny how that works when I'm the one who is supposed to be calming their fears! And then with a few sprints up and down the hall, I'm out of breath and beyond exhausted.  But for thoes few minutes, I was free.  I live for thoes moments. Where we have fun and laugh. Smiles instead of tears. Laughter instead of fear.

In my heart I know it will be a while before its my turn!  And even though the thought of waiting much longer makes me want to kick and scream, I'm going to smile.  Because today I am alive and that's what really matters.

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