Where do I even begin? It feels as if my heart and my head
are about to explode; thoughts running rampant as I try and grasp the new
reality for my brother, HG (Dan). Its ironic how quickly things can
change------in the blink of an eye what was------somehow------ no longer
is.
This last year has been a challenging one for the Parr
Family. I know everyone has challenges and many are greater than ours but for
us this last year has been like a window shattering into a thousand little
pieces and each time we have gone to pick up the glass---another piece
shatters---leaving us with so many emotions it is hard to put into words.
Along with HG’s diagnosis of Primary Biliary Cirrhosis (PBC)
we have grieved the loss of my grandfather, aunt, cousin, and several friends
since Christmas. It has personally left me with a feeling that death is
standing near my heart and at the door waiting to greet someone new and I am
determined it WILL NOT be HG!!! I know this may sound silly. Most of you that
know me know of my faith. My belief that there is a merciful and loving
Heavenly Father that is aware of my family and our needs. I believe in life
after death and I believe that families are eternal BUT that doesn’t make any
of THIS easier. I repeat……THAT doesn’t make any of THIS any easier.
When people hear the word cirrhosis of the liver they
automatically think that alcohol is the only cause. This just isn’t true. The
Dr. said that HG has a liver of a 70-80 year old man who would have had to been
an alcoholic from age 10 that drank from morning till night to cause the damage
that is done to his liver. PBC (primary
biliary cirrhosis) is a type of autoimmune disorder. Research shows that it is
genetic which makes sense to us because my grandmother (mother’s side) is
currently suffering with cirrhosis of the liver and has never had a taste of
alcohol in her life. They say that PBC can be easy to detect but that just
wasn’t the case for us. In fact my research has shown the opposite so the jury
is still out on that one. If you want to know more about PBC here is a link to
the Liver Foundation that will tell you everything you ever did and didn’t want
to know about PBC.
Many of you have asked….Now what? That is a good and hard
question to answer. For HG…it isn’t and hasn’t been fun. Life has changed
drastically for him and his quality of life right now is heartbreaking to
watch. Our hands are tied as we sit and watch and wait and wait and wait AND
WAIT!!! So I will give you a quick run down of what is happening, as there is
too much information to give at one.
First, Dan is completely unable to work. He has a difficult
time functioning and doing the basics. Things that had once been easy like
driving a car or making dinner are now difficult and overwhelming. Some days
they are just impossible. Why? Some of the symptoms that PBC causes are
fatigue, jaundice, and dry eyes and mouth. It also causes mental confusion due
to the buildup of toxins that are ordinarily removed by the liver. These are
just a few of the symptoms that HG suffers from. Another complication is Portal
hypertension. In medical terms….The portal vein carries blood from the stomach,
intestines, spleen, gallbladder, and pancreas to the liver. In cirrhosis, scar
tissue partially blocks the normal flow of blood, which increases the pressure
in the portal vein. This condition is called portal hypertension. This is a
common complication of cirrhosis but has led to edema-which is swelling due to
a buildup of fluid in his abdomen, particularly. As you can imagine this is
very painful and uncomfortable. HG goes in 2x’s a week for a Paracentesis where
they drain the fluid from his abdomen. Super fun (NOT!!!)
Second, now is a time for testing and waiting. There is no
doubt that HG needs a new liver. It is clear without one he will die. He is in
the process of getting on the transplant list but in order for that to happen
there are a series of tests that must be done. Some of you may not realize but
livers are in high demand and there is a HUGE shortage so not just anyone gets
on the list. There are specific requirements one must meet before getting their
name on list. Too many to list but they include blood work and a mental
evaluation. Dr’s are confident he will be on list by end of summer and then the
real waiting begins. Only 50% of people that need a liver will receive one in
time and it looks like the average waiting time is about 3 years (depending on
your MELD score..again too much info for now). Many factors play into this and
I will go into more detail at a later time.
Believe it or not….this is a quick run down of what is going
on and some of what lies ahead. There is much more to tell and that is why I
decided to blog. I am hopeful that being able to get my thoughts down on paper
will allow me to get some of that sleep that has evaded me. Especially lately
as the details of all that is involved in a liver transplant consume my mind.
My eyes have been opened to a world that I never knew existed. One that I
particularly would have been fine never finding but unfortunately that just
isn’t the case.
There is one thought I wish to leave you with today and that
is Organ Donation. Please seriously consider becoming an organ donor. I have
desperately been trying to find the silver lining in all of this and bringing
awareness to organ donation is it. There are so many people like HG that want
to live. I repeat…..HG WANTS TO LIVE. People who were once full of life are now
suffering because of disease. Your donation is the only hope that they have to
live. Giving the gift of life after you leave this earth is one of the greatest
gifts you can give someone like HG and our family. Please, please consider this
selfless act because it will be someone like you that can save my brother. Please
help me save him. I honestly CANNOT bear the thought of living life without
him. Liver Disease is real. Life is short. Hug your loved ones a little tighter
and join me in the fight for HG and become and organ donor today.
http://www.organdonor.gov/becomingdonor/index.html
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