February 28, 2014

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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