a time there was a woman who was enjoying life, raising teenage
sons, loving her husband of twenty some odd years, working
4-5 days a week at her regular job and 3 long nights a week
co-managing a night club with her husband. Life was great!
She was busy working, making new friends; partying and loving
ever second of life...well except being so tired from all
a vain person as far as appearances, this woman had her
nails done regularly at a salon in the latest french manicure
fashion. And she also painted he toenails, after all one
must look great when shoes are absent.
the lady had a toenail fungus that yellowed her large toenail
and there had been much advertising for a new treatment
for nail fungus that really worked!!! So, she immediately
went to the doctor and indeed the doctor diagnosed her with
a nail bed fungus, very common but very hard to treat, but
fortunately they had been having great luck with this new
medication. So, feeling great about it all, the doctor preceded
to explain that this medicine has been known to elevate
liver enzymes and could cause possible liver damage....
so he ordered a blood test to check the levels. And much
to everyone's surprise the enzymes came back.... really,
really high...alt 689 and ast 365.... so, what does that
mean… probably just high as a result of alcohol, so lets
stop drinking for two weeks and repeat the test... .well,
while this cramped her style of having that going home drink
at the bar and put a real crimp in her week end fun, she
agreed and followed instructions and went back for another
blood test...still high, so lets not drink for a month and
repeat the test...okay okay, Now this lady was getting pretty
thirsty for a beer by this time, but understood the importance
of the tests, there had to be a reason for the elevated
enzymes....and she was sure it couldn't be serious cause
she felt great! (Well, except being tired all the time).
when the next set of blood tests came back still high, the
doctor started running hepatitis tests. Now, this gal was
sure this was a waste of time....she'd never had yellow
eyes, and knew that would be one test she'd pass with flying
colors. The doctor even scheduled a sonogram of the liver
and it passed with flying colors. After waiting what seemed
like endless days, she finally called the doctors office
and asked the nurse about the results. The nurse scanning
the files told her that her "A" was negative....her "B"
was negative....at which time she said well, see there,
I told you I didn't have hepatitis and with that the nurse
replied but...wait....your "C" came back positive. Never
had this woman heard of hepatitis C....what is that.....?
And the reply was...you'll have to talk to the doctor about
that… But of course, she should have known better! The doctor
of course wasn't available, so, she had to have information
immediately...so she called her brother in law, an attorney
that specializes in medical cases and asked him. He had
heard of it but wasn't well versed and said he'd obtain
some information from the Internet for her. Later that evening
she picked up a huge stack of papers and as he handed them
to her, said, it isn't good!
reading the papers, tears streaming down her face.... she
sobbed to her husband that she had an incurable liver disease
that sometimes led to cirrhosis and/or liver cancer. She
felt she was dying and proceeded to fall into a depression....
stayed at home and slept or cried.... couldn't tell her
mother or friends.
a few months of crying and wallowing in self pity, she decided
to get on the computer (which scared her to death) and find
some information. By this time she was mad, how could this
happen, why did this happen...you know the story! And by
a stroke of luck, she found the Sapient Health Network,
and more information than a person could absorb in a lifetime.
She found stories of people who had hepatitis and message
boards where she asked questions and finally, got enough
nerve to go into a chat room. Well, that was by far the
best move she'd made. She found compassion, understanding,
a new family that understood exactly how she felt and helped
her cope. Told her what to expect in the days, weeks and
years to come. She met with these people everyday, learning
more and more and slowly coming out of the depression. She
met and greeted new people in the chat room, they came everyday,
more and more people and they all needed help, just as she
had.... she felt great being able to help calm some of the
fears of the "newbies". And she actually started to believe
that she'd live a lot longer, and probably die with the
disease, not from the disease.
the next hurdle was deciding to have a biopsy or not to
have a biopsy. Knowing full well that if she wanted to know
the shape her liver was actually in she'd have to have one.
But she put if off for a full year and watched her diet,
cut out caffeine, quit drinking and tried just about anything
she'd heard of that might work.
luck would have it, the woman needed to have a hernia repair
surgery and it was suggested to her by her oh so intelligent
husband that perhaps the biopsy could be done at the time
of the surgery and her surgeon happily informed her that
he could indeed do it at the same time.
went well for the woman and there were no complications
from the biopsy. When her doctor spoke to her in the recovery
room she was able to ask him what her liver looked like...to
which he replied it looked good, good color, shape etc.
Now this was great news and her spirits soared. The next
task was to wait for the biopsy report.... not an easy thing
to do for this woman and when the doctor didn't call and
she got tired of waiting she called and talked to yet another
nurse...who said that yes the report was back, the doctor
wasn't in as this was a holiday weekend coming up but she
could read through it briefly. And the nurse, in a hurry
to get home, promptly replied, I don't understand the wording
but it says you have cirrhosis... with that she said to
call back and make an appointment.
you must understand that she wasn't prepared for that report
at all. She was convinced that the report would come back
good and that she'd have plenty of time to wait for the
CURE to be found. Now she didn't have time and she once
again fell into another depression. At least this time she
admitted she was depressed and asked the doc for some help
in that direction. But the dark cloud remained and she racked
her brain trying to figure out how she got this damn disease
in the first place. She had believed it was from the nail
salon that she used to go to, she had in fact quit going
to the salon because they kept nicking her cuticles and
causing her to bleed and it was painful. Not knowing about
hep C and it's transmission, she'd never given it a thought
at the time. But that was only a couple of years and she
had cirrhosis so perhaps it was from the tattoo she had
gotten about 5 years prior to the diagnosis but her husband
had received one the very same day and he was fine...she
thanked God that his tests had been negative. So, then it
must have been the tattoo she'd gotten when she was 23.
Then like a drowning person whose life flashes before them,
she remembered the few times she's experimented with drugs
when she was 21 and had even used needles a few times. She
was sure they had taken the proper precautions... never
using the needle before it had been sterilized… but by now,
she didn't know how she'd gotten it and didn't care....she
had it and now she had to go to a liver doctor and get treatment,
knowing full well that she'd be giving up more of her life
as she knew it. For a year of what proved to be days, weeks
and months of endless headaches, aches, and tiredness. So
much tiredness, she had never been so tired for so long
in her entire life. Thank goodness for the anti depression
medication cause the poison they give you causes depression
in a lot of people.
saw the gastro and told them the course of treatment she
wanted. She had read and talked with others in her support
group about treatments that were available and told them
she wanted to do daily doses of infergen at high dose for
3 months then cut back to a smaller dose. But all she got
was that it wasn't the treatment course that was being recommended
at the time. She knew full well that many were trying this
but could not get them to change their mind, while they
were all the time pushing the combination therapy that they
felt was having the best results, statistically speaking.
Being a strong willed person and knowing that if all they
offered was the "combo" she didn't want it! She'd do no
treatment at all in that case. Well, they said sure, you
can do infergen if you want.... so with the game plan in
mind, she had to settle for doing small doses three times
a week. Three times a week, pushing needles into your stomach
only to make you sick and tired for a year proved to be
quite a task in the months ahead. Years usually fly by quickly,
but that was the longest year of her life! There were a
few high points in that year...The doctors thought the biopsy
report that she had received had too many inconsistencies
and asked her to allow their pathologist to examine the
specimens and she indeed gave them the permission and obtained
the specimens and turned them over to the new doctor....but,
not before opening the packets despite the warnings to NOT
open! She was surprised to see the little wormlike pieces
of her liver. She had looked at hundreds of pictures of
diseased livers and these sure didn't look like those. And
in fact the new report said there was no cirrhosis! Now,
she was a happier person, much happier than she'd been in
a long time. Then the three month blood tests that showed
she was responding to treatment and the one at 6 months
that showed she had no viral load.... well, she was ecstatic
to say the least. It helped get her through the next six
months. But, at the end of treatment, there was again a
viral load.... she was labeled a non-responder. Down again!
Disappointment flooded through her veins as quickly as the
virus. So once again she had to reach down in the depths
of her soul and pull herself up. She rationalized that she
had given her liver a rest, she had reversed some fibrosis
and had bought her more time....time to wait for the "CURE".
today, this woman, waits patiently with her online family
and her angel of a husband. She will never forget all she
gained from this group of people...some with a face, some
with a voice, some with just a typed word. She cries for
the loss of some of the most courageous people she's ever
met, which lost the fight. She tries to stay strong for
those that are suffering and waiting for a liver, waiting
to get sicker so they can be put on a transplant list. She
tries to give encouragement and support to those she's come
to know and to the new ones that arrive everyday.
her next fight will be to stay strong and healthy while
she waits for a cure.......
lives......happily ever after.
not quite... .the woman as you may have guessed is me, Pal,
48 years old. I was diagnosed in Oct. 97. You've read my
ups and downs. I finished treatment in March of ' 99 and
my liver functions remain in the normal range and as their
is some controversy as how to re treat people whose liver
functions are normal after treatment, I remain steadfast
and will refuse any further treatment. I can't help but
HOPE that there will be a cure in the near future, or at
least a decent treatment course, that won't cripple us,
and one that will be more effective. Until then, I'll wait,
try a few things to help the aches that still plague me...
.the tiredness that doesn't ever seem to quite go away....
light the candles, cross my fingers, wish, and hope....
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