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My abdomen was swollen with fluid…..Try to imagine two large soda bottles strapped to your belly.
My perfect life was shattered in January 09.
I was with my son on business for one
night in Atlanta, Georgia. We had driven up from Florida that day, checked into our
hotel, had a late dinner and went to bed. Luckily we were sharing a room. Luckier
still he was not wearing his usual earplugs to protect against my snoring.
He woke
me in the middle of night. I was lying in a pool of blood that I was coughing up.
I was unconscious. He called 911 and I was taken to Grady Memorial Hospital by ambulance.
That
night was the beginning of the great test of love that was to follow.
I had had esophageal
bleeding and they used an endoscopy camera down my throat and banded the bleeding
veins to stop it. I was then taken to the ICU.
My wife (then fiancee) arrived the
following day. She refused to leave me, and spent the nights in a bedside chair.
I was amazed to be told I had advanced cirrhosis of the liver as I was not a heavy
drinker and was generally in good shape.
I had not been sick since I was 28, when
my spleen was removed due to an extremely rare blood disease called "sea blue histiocyte
syndrome". In fact I had the belief that I could not get sick and if I did, it was
a mistake. Even now, I look down at the scars across my abdomen and have difficulty
believing, on an emotional level, that I was ever sick and actually had a liver transplant.
I was introduced to the “joys” of paracentesis in Atlanta. My abdomen was swollen
with fluid. To relieve this they numb a suitable area on the abdomen and then insert
a needle and catheter, a type of plastic tube. Some fluid is sucked out through the
needle and then the needle is withdrawn, leaving in the catheter. This is then connected
to a plastic tube. The other end of the tube is pushed into the top of a bottle containing
a vacuum. This sucks fluid from your abdomen into the bottle.
You are awake the whole
time and it is quite fascinating to watch the straw colored fluid spurt into the
bottle. At the same time you can feel your abdomen becoming flatter.
I usually had
2-3 liters removed at a time. My record was 4.2 liters. Try to imagine two large
soda bottles strapped to your belly.
I was discharged a few days later and flew back
to Tampa.
We saw liver specialists in Tampa and also in London. We also bought books
on my condition and researched it on the internet. Important point, do your own research
and do not rely 100% on what you are told.
Due to my swelling problem, I was put on
a total daily fluid restriction of one liter, including juices and soups and a sodium
restriction of 1000 mg per day. Until you read the labels, you don't realize how
much sodium is used in everyday foods. A slice of bread has 150 mg and a small piece
of cheese 300 mg for example.
My fiancee learned to cook special meals for me. But
was a tough spring and summer for me with the humidity and heat in Florida.
Over the
months that followed I got steadily worse.
I fainted a few times, in a restaurant, at LifeLink center, outside doctor's office, at home and of course at hospital. I was in and out the hospital (and sometimes ICU) nearly every month.
After the esophageal bleeding episode in Atlanta, I had another one in Tampa at the hospital. I threw up fresh blood in front of the nurse while she was checking my IV drips. Again, an endoscopy camera down my throat and banded more bleeding veins.
In May 2009 they thought they could help me with a procedure called TIPS. In this
procedure a stent is put into your liver to enable better drainage of the fluids
that build up in your abdomen. This fluid is called ascites.
A healthy liver produces
albumin, and this holds the fluid within your body. A diseased liver may not produce
enough albumin and fluid "leaks" from the rest of your body into your abdomen and
chest. Thus you can be dehydrated in your face and arms yet have a massive swollen
belly.
But on the morning of the surgery, in early June, I was told my blood tests
showed I was too weak and my liver too far gone to enable them to continue.
After all the check-ups and blood works, the doctors decided I would need a liver transplant.
Early Stages of My Sickness