Liver Clinic Appointment

I had my Transplant Clinic follow up on Monday.

It was a little different than usual.  I was alone, had had no routine scans or test done and I had never met this Doctor before.  No worries.  OK, I was a little worried.

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Guess what day it is??

One hint:  Its not Hump Day!

Its National Donate Life Blue & Green Day.  

It feels like every April I set out to share so much but something always comes up.  Every.  Single. Time.  But I have a great reason for one of the weeks.  I flew out to surprise my older brother at his homecoming. And then of course I came back and after 2 days I got sick. I'm feeling a little better today and I know my body can't fight off the germs as well anymore. That combined with a little exhaustion from traveling, I knew it was bound to happen.  But it was beyond worth it, to get to see him come home to his family and to be a part of that.  

And while its not the greatest shot (I had planned on getting something special and failed) I did show my support today too!! 

I started this post before noon.  I'm about to hit publish and its almost 11pm.  Yeah, TGIF!!

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Happy Donor Day

The stores are sold out of chocolate and flowers.  Must be Valentines Day!  But did you know that February 14th is also National Donor Day?

So today, when you are done signing that sappy card for your lover, take a few minutes to give another gift. You can find out how to register in your state as a donor by visiting Donate Life America.  It only takes a few minutes.

There are 123,379 people waiting on a life saving transplant.

Every 10 minutes another name is added to that list.

On average 21 people die each day, waiting for a transplant.

90% of Americans say they support donation but only 30% know how be become a donor.

Lets change this.  We need more donors.  We need more awareness.  Talk about being an donor with your family and friends.  Encourage them to register as well.  

Share the love.  

Happy Valentines and Donor Day!

Post by Organdonor.gov.

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Update of Sorts

Not my typical Wednesday post but I figured I have a few minutes and since my phone is being a pain and not letting me upload my pictures, Id get this out of the way.  

Yesterday was my liver clinic appointment.  Although, I'm not sure I would call it that much.  It was more like a meet and greet.  The Doctor shook my hand and that is the only contact we had.  No abdominal exam. No checking my breathing even.  The nurse checked my stats, so I do know that my blood pressure was a good 106/64.  And now that my appetite is back, I've gained back the 6 lbs that I lost last month.  Not a big deal.  I was so caught off guard and felt so rushed that I didn't even mention the shortness of breath to him. Or the bloating.  Which could have been brought up when he did my exam, except that never happened. After a 2 hour wait for a 6 minute appointment, I was just to out of it to even think straight.  I feel asleep somewhere in there.  Something that happens a lot these days.  Another thing I should have brought up.  I did bring up my mood swings to which he laughed at.  Never got an answer there either.  

But there was good news.  My last scans show no cancer.  My liver and spleen are still greatly enlarged but that's not news.  My labs were good.  My liver is diseased, and while it is not functioning as well as it should be he said it is not failing just yet.  And until it does, I will just keep doing what I'm doing.  Waiting. I've been doing this for the last six years.  But hearing that you are not sick enough yet to be helped burns like a slap in the face.  EVERY. TIME.  

So here I am.  Writing this out.  Waiting for my meds to kick in and knock any energy I have left right out of me.  Praying that I am able to pull it together and pick the boys up from school.  Keeping a mental reminder that I need to get the house cleaned and dinner started.  All while feeling like I am stuck in slow motion and I'm not going to be able to get any of it done.  I spent the morning reading and trying to refocus on the things I need to pay more attention to.  The boys, David, the dogs and the house.  These are the things that matter now. They are the ones I am doing this for. 

I still have to call and schedule another mammogram as there are even more lumps that the doctor is concerned about.  The last one was nothing so I am praying these are the same.  I will call the liver clinic to see what the results of my blood work were and schedule the ultrasound they ordered.  And on Friday I have an appointment with the hematologist.  I swear I can't catch a break.  But I can't sit here and let it eat at me.  I usually do pretty good at keeping on the bright side but every now and then I have to pull my self out of the dark and remind myself that I could be worse.  It is what it is and it really isn't that bad.  

I'm beyond thankful for all the support, words and prayers that everyone sends me.  I was glad to have David there with me even if he is still laughing about me talking in my sleep.  He thinks hes funny, that man! But I love him for keeping me smiling when all I wanted to do was pitch a fit like a 4 year old.  Despite all the craziness, I am beyond blessed..

I am still debating on switching transplant clinics.  But I am loyal to a fault.  I have been seen here for the last 6 almost 7 years.  And have only had problems the last 2 years or so.  There is only one doctor I care to see who actually gives me the time of day and his full attention.  Do I stay or do I go?  Can I?  I have no idea what to do. Time will tell.  No decisions till after the new year.

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National Minority Donor Awareness Week

Lets be honest.  Organ Donation isn't something that we talk about on a daily basis.  It isn't or at least, wasn't talked about when I was growing up.  Not at home and not in school.  Because most people don't think about it until it happens to them.  Until they or someone they love is told that they need an organ transplant.

While it is not a deal breaker, transplants done with donor and recipients being of the same ethnicity have a better success rates.  I remember when the doctors asked me what my race was. When they explained this I was for sure that my only chance was going to be family.  But when they said that I would have to have a cadaver liver, my family is out of the question.  I need them all safe and sound and cheering me on though all this.  But then I wondered how many of the kids from back home are organ donors.  And if they even knew it was possible to take something out of someone and give it to someone else.  So I asked, and was blown away at how many had no clue.

I know today is the last day of Minority Donor Awareness Week but that does not mean we can not share the good word with our family and friends.  Talk about it.  Educate yourselves and then educate others. And please be sure to visit Donate Life America and see what steps you need to take be make it official in your state.  If you haven't already, register today!  Thank You from myself and the other 123,210 people that are waiting for a life saving organ.

(hover over your state and see the numbers)

Has your life been touched by organ donation?  I would love to hear about it.  How much did you know about it beforehand?  Have you registered to be a donor?

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Happy Donate Life Month!

April is Donate Life Month.  And you know what that means.  Lots of sharing around here. I really have been meaning to write more, but something always comes up. But the house is quiet now, Thank You Ninja Turtles.  I have about 15 minutes of alone time.  I think.

So I wanted to share some numbers with you. Which is funny because I am awful with numbers. Horrible.  And the Hepatic Encephalopathy only makes it worse.  There are days where I look at my 3rd graders homework and it looks like jibberish. But here are some numbers stick with me!

An average of 18 people die waiting for a life saving transplant each day.  

On March 28th there were 121,812 people waiting for a transplant in the US and today there are 121,931.  

15,725 people, including myself are waiting for a liver transplant.  

1,668 are here in Texas.

There are only 7 of us in Texas being treated for Budd Chiari Syndrome. 

I am one of 98 liver patients at the Methodist Transplant and Specialty Hospital here in San Antonio.

I am the only BCS patient in my clinic now.

So here is my plan.  I want to see just how much the numbers change this month!  If over 100 people were added in less than a week, I can only imagine how that number will grow over the next 4 weeks.  

Are you a registered organ donor?  Why or why not?  Has organ donation touched your life?  I would love to hear your stories!  Sharing is how we spread the good word and that's what we need.  More people need to be properly educated on Organ Donation.  Its a scary thing.  I get that.  But it is saving lives.  And what better gift can you give someone than the gift of life?

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Friday 5: Questions about my liver disease

I've kinda gotten away from why I started this blog in the first place.  Why?  Because I let someone make me feel guilty for putting my story out there.  I didn't start this for pity.  I wanted to share my story and show that I was going to live with this liver disease.  And I was going to live a good life.  To share my struggles, my happiness and my hope.

Right now I am stable.  There isn't much going on for the liver transplant patient part of me.  So I have been sharing the rest of whats going on or sometimes nothing at all.  I miss writing out my feelings and not expecting to be judged or criticized.  For the longest time I felt guilty for over sharing but this is MY blog after all right?  So if right now my dogs are the center of my worries, or the boys, or whatever, I am going to share it here.  Because I can :)

So in the spirit of getting back to not feeling guitly about my liver disease, here are 5 common questions that I get when people do get over the shock that I am 31 years old, on the transplant list and its not alcohol related!

How long have you been on the list?

I was listed with UNOS on May 25th 2010.  So this year I will be coming up on my 4th year on the liver transplant list.  According to my clinic the average wait time for a liver 6-12 months.  Now before you get upset or feel bad for me, know that I am ok with this.  Most days anyways. I have had 4 healthy years with my boys.  I have watched them grow, start school and become little men of their own.  I am thankful for the time I have had with them so far.  When time comes for my transplant, I know I will be in pretty bad shape and will most likely miss out on a lot of things.  So I will take all the good days I can get.  Even if I have to wait another 4 years.

When will you get a transplant?

My usual reply to this is "when I am sick enough to need one".  The list is based on numbers.  Not the way you would think though.  It is based on our MELD scores.  The higher your MELD, the sicker you are.  My doctors are very up front with me and have told me that for me, I most likely won't move up until one of my other organs starts to "scream".  Read Shut down. If it is my kidneys or my heart, who knows but going by how my disease is progressing, it will most likely be one or the other.  The blood flow to my heart is restricted and often as the liver fails the kidneys try to pick up the slack and in turn over work themselves. Isn't it amazing the way our organs all work together.  Liver disease is also very unpredictable.  I was told I could wake up one day, yellow and jaundice and my MELD could jump way up.  I could get the flu and my body just shut down because it can't fight it.  Or I can be stable for the next 10 years.  So when will I get my transplant?  I have no idea.

How do I find out if I'm a match for you?

As much as I would love to get this over with and get on the road to a healthier life, I would struggle...a lot with a donor liver.  Well I say that now that I am stable.  I know if my life truly depended on it and it was my only choice I would accept it.  But for now, not only would I pass, it just isn't an option for my type of liver disease.  My doctors have said that a donor would be a last resort in my case.  But just because you can't help me, please still register to be an organ donor.  And consider saving a life of a stranger or someone else you know. There are so many men, women and children who could have a live donor.

How did you know you were sick?

David and I went in for my big ultrasound and as soon as the technician put the wand on my belly it was written all over her face.  She made up an excuse about forgetting papers and returned with the Doctor.  I remember thinking, You have GOT to be kidding me.  After 2 losses and a preemie, I knew immediately that there was something wrong.  I am so glad that the problem turned out to be mine and not Alexanders. And I mean that from the bottom of my hear.  I would gladly take on any illness or problems if it meant my boys could be happy and healthy.  The doctor explained that my liver was enlarged and that it was most likely nothing to worry about but she referred me to a GI doctor just to be sure.  Dr H called me after my appointment and scans and said "I am very impressed by your liver" And I smiled.  Until he told me that it was because he has never seen one so large.  Damn.  He diagnosed me with Budd Chiari Syndrome and explained it the best he could.  Most of it was just a blur.  Huge liver. Clotted veins.  Chronic liver disease. What the heck people.  All I wanted to know was if I was having a boy or girl and within the week I was scheduled for every scan and test in the book.  Life hasn't been the same since.

Have you ever felt like giving up?

Are you kidding?  I have gone to some pretty dark places while I have tried to wrap my head around this whole thing.  One minute I was a happy expecting mom and the next I was a confused and ill mom who not only was at risk of losing my baby but of dying myself.  Now if you have ever been pregnant you know the emotions that run crazy though you anyways.  Add on all the stress and worries and yeah, there were quite a few days I just wanted to disappear.  But then I would realize that if I gave up, I was giving up on my husband and my son.  Not to mention the life that was growing inside of me. My boys have been my anchor though this whole storm.  Whenever I feel like I just want to run away, I look at them and they wash away all my doubts and fears.  My husband, I can't imagine not having him by my side.  Even though the first few years were insanely hard on our marriage, we are stronger now than ever.  I will never give up and I know my guys wouldn't let me anyways.  There are still dark days, but there is always a light at the end of the tunnel.

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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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Friday 5: Me and Liver Disease

Liver Disease is a taboo subject to most people.  When I tell someone that I have a liver disease they usually think it is from drinking.  They they ask  if its from hepatitis.  No and nope.  When I tell them that I have Budd Chiari Syndrome they look at me like I am speaking Marshallese.  What is it?  How did I get it?  How to I cure it? Is there medication?  Here are 5 facts about me and Budd Chiari Syndrome!

1. Budd Chiari Syndrome is a very rare liver disease caused by a blockage in the hepatic veins that carry blood out of the liver into the heart.  For me it was chronic.  Over time as my veins were being obstructed my body created a web of veins around the clots. 


2. The most common cause of Budd Chiari Syndrome in the US is blood disorders.  This was the cause for me.  Shortly after diagnosis I also found out I had the Prothrombin Gene Mutation which makes my blood clot much easier than normal.  This was passed down to me from my father who tested positive after I was diagnosed.  My brothers and sisters as well as my boys have a 50% chance of carrying the gene as well.  But no one else has been tested yet.  


3. I had no idea I was even sick.  My severely enlarged liver was discovered when I went in for an pregnancy ultrasound.  As my belly grew, the pain got worse and I was retaining a lot of water.  Now days, the pain comes and goes.  When its bad, its pretty bad.  The encephalopathy is what gets me.  The most common symptoms are ascites or fluid build up.  Pain in the upper right abdomen.  Nausea, weight loss (none of that here), vomiting blood, enlarged spleen and edema (swelling).  I've been able to hold off a lot of swelling with a low sodium diet thankfully because I don't need any help in the puffy department.


4. There isn't an easy fix for this one.  The only way to "cure" it is with a liver transplant.  Until then, my body will work as hard as it can until it just cant anymore.  But eventually my other organs will fail.  This will bump me up on the transplant list and get me closer to my new life.  But for now, its a low sodium diet, exercise, blood thinners and other meds that keep me going.  


5. What if.  What if I never knew.  It was by luck that I found out.  I had given up all hope of getting pregnant again.  So what if I never was diagnosed?  Well when I was diagnosed and all my problems with past pregnancies were discussed, my doctors all agree that I probably had the clots back when I was pregnant with Anthony 3 years prior.  What is the life expectancy of someone who is not treated? Three Years! I was hanging on my a thread and I had no clue. Long term survival following a successful complete liver transplant is between 69 and 87%.  I can handle that!

Every day I open my eyes I thank God for giving me the chance to enjoy one more day.  Life is a gift.  Don't take that for granted.  Love the people that love you.  Forget the ones that don't.  And if you haven't yet, register to be an organ donor at Donate Life America!  

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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!

Hope Whispers is now on Bloglovin.  Follow my blog with Bloglovin

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Three things! #HAWMC

Day 29 (April 29) – Congratulations

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

1.  I have hope.  Sometimes I lose sight of it, but never for long.  I grew up in a family fueled by alcohol and abuse.  I've been heartbroken.  I had 2 miscarriages and made it though two high risk pregnancies.  I've traveled the bumpy road called marriage and am better for it!  I lost my father to cancer.  I was diagnosed with 2 rare diseases that will haunt me for the rest of my life.  But through it all, I am still smiling.  I still have faith in myself.  I got this!

2.  I try.  I used to always get so frustrated when I was younger.  When I couldn't do things or didn't think I could, I would give up or avoid them.  My dad always told me that I at least had to try.  It may have taken a lot longer than I had hoped but I am finally learning how to put myself out there.  Try new things and not give up at the first sign of defeat.  This writing challenge has been so much fun, but I get behind. This weekend none of my posts posted.  One I accidentally deleted.  But I am determined to follow though.  Unlike the last two years.  Even if I am missing a day somewhere!  Life is hard, but we owe it to ourselves to try and do our best and live it to the fullest.

3.  April is Donate Life Month.  And it was sorta taken over by this challenge.  I'm a little bummed that I didn't share more about it, but I have a few posts already scheduled for the upcoming weeks.  Every month should be donate life month anyways.  There is also a little video in the works.  I'm just trying to get it all together and then I will have to find the guts to share it. 

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Wordless Wednesday: 3 Pins #HAWMC

Day 24 (April 24) – Wordless Wednesday

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

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Organ Donation: 3 Truths and a Lie #HAWMC

Day 16 (April 16) – Misinformation

Tell us 3 things that are true about you, your condition, or your Health Activism. Tell us 1 lie. Will we be able to tell the difference?

Bonus points – share your 3 + 1 as a poll on FB. Share the results!

Its amazing how misinformed so many people are.  Most people are shocked by what the myths and truths are when it comes to organ donation.  I love being able to correct them and help them see the truth.  So I was really excited when I saw this prompt.

I put up a poll on FB, doe's that make up for my missing post yesterday?  Oh you didn't notice...never mind then!  Moving on.  So the poll.  Here is what I asked.

3 truths and a lie. Can you spot the myth?

	Organ donation is consistent with the beliefs of most religions.	+2
	The organ donor’s family is never charged for donating	+2
	You may not be healthy enough to be an organ donor	+3
	There’s no defined cutoff age for donating organs.	+1

So which one is the myth?  #3.  Lets recap

Most religions believe that organ donation is a gift and a very great thing to do.  I did read that the Shinto think that "injuring" a dead body is a crime and it is very hard to get consent for donation.  And was also told that there are other African religions who believe that the body must stay whole to make it to the afterlife.  But most are all for it and say it is an individuals decision.

There is NEVER a cost to the donors family for donating.  The donors family and insurance is only accountable for charges before death.  There is no charge for donating!

There are very few conditions that will disqualify you from being an organ donor.  But that call is to be left to the doctors.  I know my liver is in no condition to be donated, but what about the rest of my organs.  And then there is all so your eyes and tissue that might be OK to donate.  Don't take yourself out of the game yet?

Its not a question of being to old or young.  Its a question of how healthy the organ is.  I have read stories of Organ donors in their 80's.  To their children who are in their 50's.  There is not a cut off date any where that says you must be under this age to donate.

So, keep those organs healthy.  And be sure to register with your state as an organ donor.   Much love and thank you to those that took the time to vote!!

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Acrostic Fun

Day 13 (April 13) 

Write a health acrostic for your condition, hashtag, or username! 

B. bilirubin
U. upper right quadrant
D. damage
D. doctors

C. cirrhosis
H. hepatic encephalopathy
A. ascites
I. inferior vena cava
R. rejection
I. inr

S. spleen
Y. yellow
N. nurses
D.diuretic
R. rare
O. organ donors
M. mri
E. esophageal varices

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Intro to Budd Chiari Syndrome #HAWMC

I was diagnosed with Budd Chiari Syndrome and Prothrombin Gene Mutation (Factor II) in 2008.  BCS is a liver disease where blood clots form in the hepatic veins blocking the flow of blood from the liver to the heart.  1 in 100,000.  When the Budd Chiari was found so was my blood disorder that most likely caused the clots.

As the blood flow backs up into my liver and spleen it has become enlarged and causes damage.  I have been very lucky to be able to have come this far and still be stable.  No shunts as of yet.  I have equal good and bad days.  I have managed to avoid most of the symptoms and for that I am very blessed.  My greatest struggle is the fatigue.  With two young boys, there isn't a lot of time to be tired, so I have been doing my best to push myself when I need to and allow myself to rest as well.

I have MRIs done on a regular basis to check the progression of my liver as well as a yearly endoscopy.  I visit my hematologist every two months and have labs drawn depending on my results.  If all is good, I only have to go in once a month.  If my numbers are off, it becomes a weekly thing.  I am happy to report that I only see the Transplant team every 6 months now. And I have labs drawn to update my MELD score done every so often.  That too depends on my results.  The higher my score the more often I get my labs checked.

5 Things to know about Budd Chiari...

1. It is not something brought on my consuming alcohol.
2. There are more than 117,679 people waiting for organs.
3. The only "cure" for my Budd Chiari Syndrome is a complete liver transplant.
4. I will be on blood thinning medication for the rest of my life.
5. My boys have a 50% chance of inheriting my blood disorder.

Another thing I wanted to share was that April is Donate Life month!  A month to share information and create awareness of something that saves so many lives.  Maybe it has changed your life or the life of someone you love.  Many of my friends are registered organ donors, but there are a few who are not. Are you an organ donor?  How did you make the decision to be a donor?  And how has donation affected your life?  I love hearing others stories, so please feel free to share them with me!

Much love and happy Tuesday!

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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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Recap NHBPM

Another month has come and gone.  And yet again, I didn't finish the whole challenge.  I won't lie, half way though when I was sick, I told myself to stop doing all these challenges if I wasn't going to finish them.  Yes I missed more days than I wanted to, including my two free passes.  But the other part of me wants to try again.  And that's what this whole blog is about right?  Life knocks me down on what seems like a monthly basis.  But I'm still here, trying again and again.  So I will do the next challenge and I will do better.  

This month was a lot of fun.  And challenging.  I enjoyed sharing my story.  Some post were simple and sweet like If I could go anywhere and My 3 things.  I shared a few of my Favorite Blogs and Twitter Friends.  The prompt that opened my eyes the most was Choosing life or death.  This year has been so full of hurt and pain and it was nice to write it all out.  That's what I love about writing sometimes you don't really understand your feelings until you put them out there.   I choose life and I know that, but writing it out reminded me again of why.

I really wish I had finished the whole challenge, but I didn't and I can't take it back, so I just have to accept it and try harder next time.  Half way though the month, I honestly wanted to quit.  I was sick and miserable. I missed a few days here and was behind on my photo challenge.  But then I remembered the quote.  Its how this blog was named and its what has gotten me though some really low times.  And so I keep on trying.  And I don't plan on giving up.  Here is to another month and a strong finish to the year.  

When life says give up, Hope whispers try one more time.  

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One thing in 2013

Day 29:  “If I could accomplish one thing (anything) in 2013 it would be…”

One of my biggest goals for 2013 is going to be to help add more names to the registered donor list.  I am going to start my goal at 13 people and go from there.  I didn't set a goal this year and I feel like I haven't shared enough about Organ Donation much this year.  With a year like I had it seems like there was just so much negativity.  That has got to change.  I have high hopes for next year.  But I'm not going to wait till then. I am hoping to end the year with a bang.  Enjoy as much of the last month of the year as I can and go into the next with nothing but good.  

Do you know how many registered donors there are in your state?  According to our registry there are 2,999,471 donors registered in the state of Texas.  I know that seems like a lot, after all Texas is a huge state.  Guess how many donors Florida has?  6,879,539.  Seriously Texas?  Hopefully next year I will help add a few to our growing registry.  

As of today there are 116,570 people waiting on the list with me.  Between January and August of this year there were only 18,986 transplants preformed.  Every 10 minuets a name is added to the list and 18 people die on average each day waiting for a transplant.  We need more people to register so that more people can be saved.  

Will you help me reach my goal next year?  Why wait, register now.  I'm starting my goal now!  The sooner the better.  Head over to Donate Life America and register to be an organ donor.  And let me know that you did.  Maybe I should give away something to the first few people?  I do have some very nice Donate Life bags...

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