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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If I could go anywhere…

Day 27: If I could go anywhere…

Home.  What I would do for even one day on the beach.  The sun on my face.  The salty air.  The cool breeze.  A swim in the blue water.  Fresh fish for dinner.  Oh I could go on and on.  If I could go anywhere, that is where I would go.  Easy simple and home sweet home.

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Clouded

Day 26: Make a chart / meme / poster and write about it

After my father passed, we were going though his old papers and I found this.  When I saw the prompt this is the first thing that came to mind.  So while I didn't make it myself, these are some of the things that Dad and I talked about quite often.   

When you are told you have a potentially fatal illness, the emotions that cloud your head can be so confusing.  And for him, writing this out helped him pinpoint his emotions.  Which was a big thing, because he was a man of little emotion.  

If you ever asked him how he was feeling, his first answer was always "Oh I'm good"  Or "A little tired, but I'm OK"  But as our talks went on he would let his guard down.  A lot of the time I would have to share first.    He was always so optimistic for me.  When I would tell him I was hurting he would say the pain was a reminder that I was still alive.  He would tell me that it was OK to be angry and afraid.  We talked about denial and once he admitted to me that he was living in denial and he apologized for it.  

I think about his last couple of months and I think that I saw everyone of these feelings in him.  It breaks my heart that he ever felt them.  He dealt with his cancer mostly alone because he didn't want to let anyone in.  Even when he was surrounded by so much love sometimes he felt so alone.  

I'm not quite sure why this drawing came to me when the prompt came up.  Or if it really fits, but its what I was thinking about today.  Coffee stains and folds.  He wrote this out when he was in Hawaii getting his first treatments.  Its a glimpse into his head.  For some reason I am so attached to it.  They say that it gets easier  but every day I miss him more.  

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Evolution

How have your goals as a patient / advocate / person evolved?

My goals as a patient have changed 100%.  I remember the days where I wished to be sick enough for a transplant and just wanted to get it over with already.  But I realize now that I want to hold out on my transplant as long as I can.  Because while it is hard and extremely frustrating now, to just sit around and wait, I am stable.  After transplant, I could be stable too, but between the meds and all the precautions, life on the waiting list, for now, looks pretty good.

I never set out to be an advocate.  I wrote for family and friends.  I remember the first time someone said to me that they had registered to be an organ donor because of me.  Words can't quite explain how amazing it felt to know that I had helped add one more name to the donor count.  That year more than 10 people signed up in honor of me and while its not much compared to the need, I know that I'm helping save lives.  And that feels fantastic.  Next year I am hoping to not only share more of my story but others stories as well.   I am going to set another goal for 2013 to help 13 or more people register.  And now I know I am also writing to encourage and share awareness for Organ Donation.

As a person have my goals changed?  I think what changed more than my goals is my learning to enjoy the way to them.  Its not all about the final destination.  Getting there is the real adventure.  I have slowed down and learned to cherish all the in between moments.  I also learned not to set my goals so high.  And accept the fact that sometimes life is going to get in the way and I will just have to pick up where I left off or find a way around it. Life happens.  Change is good.  At least that is what I keep telling myself.

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A happy mind, is a healthy mind

Day 21: Write about mental health

What is mental health? 

n.

1. A state of emotional and psychological well-being in which an individual is able to use his or her cognitive and emotional capabilities, function in society, and meet the ordinary demands of everyday life.

I have shared my few experiences with Hepatic Encephalopathy. Its a brain disorder caused by my liver disease.  Wait what? Well, because my liver is no longer able to filter out all the toxins that it normally would, the toxins then pass though to my brain.  Causing the HE.  Over time I have been able to figure out what my big triggers are.  And what things are ok.  I have learned to depend on my medication instead of dreading it.  Because no matter how horrible they make me feel, its nothing compared to and HE episode or worse.  

Today we are talking about Mental Health.  The complete opposite of my Encephalopathy.  But not out of reach for me.  I love knowing that I have more good days than bad days.  I am very thankful for that.  Knowing that I am able to have mental health over illness makes me feel like I am in control.  And sometimes that feeling is the best feeling in the world.  But how do I stay healthy?  I have paid such close attention to my body that I know my triggers.  I know the signs.  And I know how to treat them. 

Some people notice that a majority of the time, I have a water bottle with me.  I drink a lot of water.  I love it.  Dehydration in one of my biggest triggers.  So I keep the water flowing.  My biggest trigger? Red meat.  So I have switched to ground turkey.  I hardly beef.  And only if I am going straight home.  Because who knew you could get drunk of meat?  That is what it feels like.  Its horrible.  

I'd like to think that these things aren't the only things keeping me straight.  Exercise, even if its just playing with the boys.  No, especially playing with the boys.  Their laughter is contagious.   Surrounding myself with positive thoughts and positive people.  Sunshine.  Writing.  Taking time to just breath.  Even if its only 5 minuets.  Find what works and do it.  And don't ever stop.

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Regrets?

Day 20: “A health moment I regret…”

Its been quite a journey.  So many ups and downs that sometimes I am left not knowing which way is up.  Do I have any regrets?  Not  many when it comes to my health.  A few silly things.  Like every time I eat a Cesar salad at Red Lobster.  I know I am not supposed to eat greens or that much salt, but its so good and its once in a blue moon.I love it.  And I always regret it after.  Or when I get an email from my fitness app that saying "a whole week has passed since your last work out."  Instant regret.

But my biggest regret is giving up on hope.  After all this whole blog started on the idea of hope.  As much as I hate to admit it, it has happened.  More than once.  I whine and complain.  At times I have been ungrateful for all that is before me. It happens.  Plain and simple.  Its part of life.  I'm going to fall.  I'm going to question my faith and lose hope.  But all that matters is I pick myself up.  Dust ourselves off and try again.

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Choosing sides. Life or Death

There were days when I begged to be sick.  Sick enough.  I was tired, scared and losing hope by the day.  One day I was a happy and healthy and the next I'm being told there is a great chance that me and the baby growing inside of me, might not make it.  Everything was up in the air.  Even the doctors seemed cautious and unknowing.  That was the hardest part.  Not knowing which side I was facing.  Life or Death.   

I let the fear settle in.  I cried. Not because I was sick.  I cried when I looked at my son.  Right in front of me played a little boy, so full of life and such big dreams.  Would I ever get to see him grow into the man I dreamed he would be.  Who was going to hug him when his heart gets broken for the first time.  When he graduates from school, will I be there to tell him just how proud of him I am?  The thought of him someday having his own family, a wife, kids and a beautiful life.  It was all flashing before my eyes and there sat a little boy, all of 3 years old.  I cried because I wanted to be there for it all and the weight of the reality was crushing me.  Nothing is promised.  I didn't know if there was a tomorrow.

I started writing letters.  Here and on paper.  I let my dreams became my reality because I thought they were all I had.  I had almost completely given up.   I pushed my husband away.  I couldn't bear the thought that I would be leaving him with one, maybe two kids.  The thought of him someday falling in love with someone else and them being the only "mom" the boys would remember.  It shattered my heart into a million pieces.  Why me?  Why now?  Why anyone?  I tried to tell myself, if it wasn't me, it would be someone else.  Maybe even someone close to me.  Then I would be watching them trying to crawl out of the hell I was in.  It was a dark and almost hopeless time.

But there was always that little speck of hope in there.  There was always something to bring me back to the bright side.  I was a mom.  I was going to be the mom of two.  I loved my husband.  I wanted to live.  And there was nothing that was going to stop me from living my dream.  I accepted that it might not be the same as I had dream but it was going to be the best it could be.  If I only had one day, I was going to live it to the fullest.  I don't remember now if something happened, or if it just clicked, but I knew I wasn't going to let life take anything from me.

Suddenly when I looked in to his eyes, I saw a life of laughter and happiness.  And I was there.  I dreamed of holding my unborn son and I pictured him crawling, walking, running.  There was no way I would ever just let go of all of this.  I kissed my husband goodnight and smiled, having faith that it wasn't going to be our last.   I had everything I wanted out of life.  I was not about to let anyone take that away from me.  I was going to live. I was going to fight.  Maybe not forever, but for what ever time I have, I will live it with love, smiles, hugs and kisses.  People tell me they wish they could have what I have. They can.  Find someone who makes you happy.  Love them something fierce.  Never stop fighting for the life you want.  Dream it then make it happen.  Live.

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Pause!

Thursday and Friday were spent in bed.  I would have stayed in bed all day today, but we bought a new car and since I'm on the title, yes even though I don't drive, I had to go along.  All I know is that I don't have time to be sick! I am working up an EPIC Thanksgiving.  One that I think will go down in the book in my family.  Super excited, and now I'm super sick.

I have my posts for the last few days all half written so I will either post a few tomorrow or I will just pick up where I left off.  Depends on how I feel.  But for now, this is all I got.  

Life is on pause till mommy gets better.  Pizzas for dinner and a little extra screen time.  Hopefully tomorrow I will be better.  Or at least 50%.  How is it that living everyday with a time bomb of a liver is easy compared to this.  I am miserable.  How come no one brings me soup in bed and flips the towel on my forehead over for me!  Whatever, sucking it all up now and dragging my butt back to bed.  Tomorrow is a new day.  And I'm gonna be better in the morning.  I am!  Right?  

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Out with the negativity

Day 14: Advice for dealing with negative feedback in your community

As bloggers we put ourselves out there.  We share very personal stories and memories.  We write from our hearts and about things we love.  About the good and the bad, the happy and the sad.  I for one love getting feedback.  I get emails that make me cry.  And comments that remind me why I am so open with my life.  But every now and the, the trolls move in.  Someone leaves a comment that I am only looking for pity or that no one cares.  There is always going to be people out there who try to bring others down.

I prefer just to ignore it.  I got a comment once from "anonymous" saying that no one wanted to read my sob story and then they went on to pick my post apart detail by detail.  At first I thought I shouldn't lose any sleep over it.  But no one had ever been so mean to me.  So I decided to write back.  I first asked why they would not just leave a name unless they were someone I knew.  In that case, how lame is it that they couldn't just admit their problem with me. Then I let them know that for someone who says they could care less to read my drama, they sure knew my story very well.  And I asked them to either keep their comments to themselves or say something to me personally. But to call me out on a comment on my blog, where everyone can see it, just seemed childish.  Especially since I knew it was just a bitter ex-friend.

After that I just stopped replying to them.  Delete the comments and move forward.  If it is more of a critique, then take a look at what the person is saying.  You have the choice to take their advice or to ignore it.  Sometimes it is just easier and better to take the high road and ignore it.  I feel like I am constantly telling my boys to just leave each other alone and walk away.  Seems like its the best advice there is.

One last thing, don't let the negativity get a hold of you.  Try your best to brush it off.  Its so easy to let it knock you down and second guess yourself but don't let it!  Be strong and be confident in yourself.

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This drink is on me!

Day 13:  Write about something Taboo.

One of the very first questions I was asked at the liver clinic was "Do you drink alcohol?"  At the time I was pregnant so the obvious answer was no.  But I did admit that before I got pregnant I did have a few drinks every now and then.  After Alex was born, I drank.  Not every day or every weekend, but there were are few times that I had a few.  My hematologist said a drink or two wouldn't affect my meds, but at clinic when they asked and I told the truth, I was advised against it.  Not long after that I was listed for transplant and I have not had a drink since then.  I would like to make it clear that my liver disease was not caused by a drinking problem.

I haven't had a drink in years.  Most days I don't miss it, but then sometimes I crave just one drink.  You know those days where everything has gone wrong, my nerves are shot and it feels like I am this close to losing my mind.  Yeah, on those days I wish I could just have a drink.  Just one.  And of course when we go out sometimes it sucks not being able to have a few with friends.  But I do it.  I do it because I know that I will regret it.  I do it because I hate wanting it in the first place.  I do  it because I'm actually crazy enough with out a few drinks in me.

I know a few people who do drink knowing that they have a liver disease.  And I have nothing against that.  Your body, your choice.  But if alcohol wasn't so taboo for those of us with liver disease, would I have a few  every now and then?  Probably. There was a time that I used to drink just for the feeling.  Eventually I ventured from the hard stuff to beer.  And guess what, its not as nasty tasting as I thought.  I have tried beers of all sorts.  Epcot anyone?  When I say I crave a drink, I'm don't mean in the alcoholic sense.  Neither does saying that I prefer the taste of beer over a soda any day.  I just enjoy the flavors.

But in the end it all means nothing.  I no longer drink.  I have accepted it, for the most part.  A good time is still had without it.  Its a known fact that drinking will affect your liver but that's not stopping many.  If you were told your liver was starting to fail, would you still indulge in a few drinks?  Would knowing someone who was affected by liver disease make you think twice?  Because drinking in this community(liver disease)
is so Taboo!

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Calling BS on a doctor

I think that in many cases, if you have a chronic illness, you have called BS on a doctor.  Here we are putting our lives in their hands, but no one knows our bodies like we do.  After all we are the only ones living in it.

When I was first diagnosed, I was right around 16 weeks pregnant.  My OB was on edge.  My high risk doc was watching me very closely.  But it was my GI, the Dr who diagnosed me, who was running the show.  At this time, I wasn't even at the transplant clinic.  Add in my primary doc and you get a whole mess of communication and opinions.  

When you have 4 different people telling you their ideas and no two are the same, its hard to figure out what to do.  I had no idea what I was supposed to do.  There is no Liver Disease for dummies book.  Or is there?    I recall sitting there on the exam table while my GI went over the possibilities.  He had never had a case like mine.  Nor had any one he knew.  He wanted to run a contrast test on my, but my other doctors said not to. He found a place in Houston that would do it, but once they found out I was pregnant, they half backed out. But I was still on the fence.  Isn't it important to do all I can do to make sure that I can be here for my baby? Was the risk worth the benefit?  Finally he dropped it and said we would do it after delivery.  Then he went on.

"Babies have been born at 28 weeks and survived."  Was he really siting here telling me that I should deliver my son this early?  On purpose?  Put him at risk for infection and so much more.  Death even.  I looked him straight in the eye and told him that yes maybe some do, but not mine.  He reminded me of the great team I had backing me up.  And reminded me that I needed to make sure that I made the right choice because I still had another little boy at home counting on me.  But it was never a doubt in my mind.  There was no way.  I remember saying to David "He says I can deliver at 28 week!  Bull S#!t".  I was going to keep that baby inside of me, safe and growing for as long as he would stay there.  

My OBs agreed that as long as my health stayed stable we would do everything we needed to do to keep him safe in there.  Twice a week I had stress tests.  Twice a week I had ultrasounds.  I had nurses calling to check on me.  At 35 weeks I had an amnio to check for lung maturity.  Failed.  The second time around, at 37 week, we got the OK for delivery.  And at 38 weeks, my beautiful and perfect little man was born.  He was healthy.  I was healthy.  All was good in the world.

I will never take back my decision to go against a doctors opinion.  I said he wouldn't be ready and even at 35 weeks he wasn't.  And he wanted me to deliver weeks before that!  I would have never been able to forgive myself for delivering so early and something happening.  Sometimes you just have to go with your gut....heart...uterus...whatever it may be.  Make your voice heard too.  Yes they are here to help us but we need to help ourselves too!  

Have you ever had to call BS on a doctor?

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To post or not to post...

Day 10: Should people post about their (or loved ones) health on Facebook? Why/why not?

It seems now days if you want to know something, you check your Facebook.  You can get the scoop on just about everything.  Do I post about everything?  I used to.  Not so much these days and there is a few reasons why.

When I first got sick, I was posting updates often about what was going on with me.  And someone actually had the nerve to ask me if it was pity I wanted.  Talk about getting the rug pulled out from underneath you.  Here I was trying to keep my family updated and share my frustrations, only to have someone thing I was doing it for attention.  That is when I got found out about Twitter.  And I've been a social media junkie since then.

Once I realized that people actually read what I was writing and a friend suggested it, I got a FB page for the blog and now I have a safe place to talk about whatever I want.  So I thought.  Wouldn't you know I had someone say something about me making a page for the blog too.  I guess some people just have to try and bring others down.  I am so glad that I know far more positive than negative people.  Because mean people suck.

I have no problem talking about my health, but when it comes to talking about someone else, I always feel like I am over stepping.  If there is something going on, say someone I know is sick, I will ask for a prayer request.  I will pass along information about other conditions and help spread awareness.  Always positive and never anything that will hurt someones feelings.  But I know that some information is better left to the person themselves to share.

When my father passed, someone posted about it on Facebook before we even had a chance to tell all of the family.  None of us had posted about it.  It was horrible.  Even though I know the person meant well.  It was just something so personal and I was already in so much pain that I saw red.  I would never EVER post about someones passing unless their family had mentioned it first.  Same goes for someone who is sick.  What if you posted and their family still had no clue.

It comes down to there being a limit on how much and what you share.  It should always be for a good reason.  To ask for support and prayers.  To spread awareness and truths.  But never to call someone out on being sick.   You just have to know what is yours to tell and what is not.  Do I think its OK to share some information? Of course.  But who knew, even I have to draw a line somewhere.

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Sent with love

Day 9:  Create the perfect care package for your members or fellow patients OR Tell a descriptive story about a memory.  OR in my case a memory about a care package because I cant follow rules...

Who doesn't love care packages?  Its nice to know that someone was thinking about you.  Someone took the time to pick out a few things and send them to you, just because.  I have been blessed.  One of my school teachers sends cards and flowers on a pretty regular basis.  So much so that the boys think she is there aunt because she shows them so much love.  When I was pregnant she would send boxes of books to keep me busy and I loved everyone of them.

Dad used to send me boxes too.  I once told him how I wanted to try a new recipe for dinner, but was intimidated because the recipe called for so many spices.  Many that I didn't have.  A few weeks later, when the recipe was gone and forgotten, I received a box.  I could tell it was from him just by the way he wrote my name.  He also misspelled the address...again.  It made me laugh because he would always ask for it and as many times as I gave it to him, the numbers or spelling were always off.  But I got it and that is all that matters.  I rushed home to open it.  There inside of it was every spice needed to make the dish we had talked about.  Each in their own little bags on which he had labeled for me.  Included was a note with an apology because there he didn't have cumin.  Although he knew very well that I would have that on hand.  He included two little prayer books that he and my sister had written in for me.  I remember feeling so loved that it brought me to tears.  I cried over spices!

The box is still in my pantry.  I see his handwriting every time I grab some spices out.  Inside the box, the bags are still sealed.  The writing has faded and I have no clue what half of them are any more.  The bag of curry powder has broken open and every time I open the door the smell hits me and I rememeber this day all over again..  I don't know if I will ever use them.  I was going to use the nutmeg once, but went out and got some instead.  If I used them they will be gone.  He is gone.  But the memory will forever be with me.  And so will he.

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Im talking about you

Day 8: Write about how you choose to write about others in your blog. (Friends, family, etc)

I can't help it.  I am a sharer.  When I starting this blog I was mostly writing for my family, so I talked about them a lot.  I talked about my friends and how supportive they were and how much I missed them. I talked about David and the boys A LOT!  Mostly the boys because they were such a big part in getting me though this all. They kept me going though some very hard times and I shared it all here. 

My intentions are always good.  I share the good and the bad.  I know lately there has been a lot of venting and complaining on my part.  But its all part of my life.  If its happening, there is a 75% chance I'm gonna blog about it.  What I don't do, or try not to do is name names.  The way I see it is, if its about my family, they will know who I am talking about.  That way, I get to get things off my chest with out telling the whole world who I'm talking about.  Everyone is happy...sorta.

One thing I would like to do is talk about some other people though.  I have so many amazing friends that I would love to share with anyone who will listen read.  Lots of amazing blogs. Some are transplant patients and some are other blogger friends.  It seems I can tell you all about me and my family but somehow get shy when it comes to talking about other people.  What gives.  But it is something I am working on and I cant wait to share with you guys all the extra blessings in my life.

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Quote Inspiration

It is not length of life, but depth of life. 

       - Ralph Waldo Emerson

Up until recently I have gone back and forth on my feelings of needing a liver transplant.  The doctors have said that I am not sick enough for a transplant.  Most days I hoped that I would just get sick already.  Because siting around waiting for it to happen is pretty damn scary.  Then I would have the days where I would be thankful for my health and I would remind myself that each day is a blessing.  In my mind it would have been better to spend the worst days while the boys were young.  Forgiving and quick to forget.  I was worried that if they were older, they would be afraid and feel like they needed to take care of me, when I'm supposed to be taking care of them.  I don't ever want to be a burden on their lives.

Over the last few months, with the loss of my father playing a huge part of it, I have decided that I can't just sit around waiting for the day I get sick.  Yes, I know it will come, but what a waste it is to just throw away all these beautiful days just waiting.  There is so much that I want to do, so much I want to see and so much I want to share.  Maybe I will live to be 100 or maybe only 40.  I wan't to make sure that I spend that time living, loving, laughing.  I want to go on a real vacation with my boys.  I want to take the time to enjoy them growing up.  I want to make plans and stick to them.  I want to stop worrying all the time.  I don't wan to be afraid all the time. I want to show my family and friends just how much they mean to me.  I want date nights with the hubby and weekend getaways.  Girls night out!  Life has so much to offer.  But I cant sit here just waiting for it to pass by, because its not going to wait for me.

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Why write?

Day 1.  Why I write about my health.

What is the first thing you do when you are diagnosed or get sick?  I know what I did.  I Google'd it!  I had been blogging for a few years on a family blog, so I thought I would search and see if I could find a blog about living with Budd Chiari.  I found next to nothing.  A few articles.  A blog that hadn't been updated in months, left me feeling like I was the only one out there.  I new it was rare, but all I wanted was to see that someone else made it through it and lived to tell the tale.

Over the past few years, I have met more and more people who have BCS.  Many who are stable and doing well and sadly a few who are very sick or have died. Mostly though Facebook and Twitter though.  I have not come across another BCS blog.  That is another reason I keep writing.  Hoping that the next person out there who has to Google "living with Budd Chiari Syndrome"  will know right away that they are not alone.

Writing has always been therapeutic for me.  I've had a journal for as long as I can remember.  I've also been a very open person so the happy middle of the two is this blog.  A place where I say what I am thinking.  Sometimes I over share and sometimes I hold myself back.  Many people say that they can almost hear my voice when they read because I write as I would talk.  This blog is 100% me.  The good the bad and the ugly.  This is my life on the liver transplant list.

I love hearing from those of you who are affected by BCS.  I have had many people reach out and share their stories with me.  This is a journey I wouldn't wish on anyone.  So being able to talk to others who know  just exactly what I am talking about is nice.  And not just my liver disease, but any of them.  And other transplant patients too.  Its amazing, the little transplant family I have come to collect since starting this blog.

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