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Contents
Diagnosis
Biopsy Day
Biopsy Side Effects
Biopsy Results
Pre-Interferon Hell
Starting Treatment is Not Starting Treatment
First Month
Petition SSA
Hepatitis C Links
Webring
Hepatitis Books
Patron Saints
Thank you to . . .
Diagnosis
I was told that I have Hepatitis C on Apri 21,
1999, at
Louisiana State University Medical Center (LSUMC). I had
been going there just to make arrangements to have my gall
bladder out. LSUMC is less expensive than the local
hospital. But blood tests showed abnormal liver enzymes
and a sonogram showed an enlarged liver, so they required
more tests. And I got a Hep C diagnosis.
I had a number of operations (hip replacements) before 1992
and I have been told it is safe to assume that I acquired
the virus in a blood transfusion with one of those
operations.
I am scheduled for a liver biopsy on May 13. I may have
contracted Hep C in operations in 1984, and my daughter was
born in 1985. She will be tested later in May to see if I
passed the virus onto her.
While waiting for my biospy and results, I am reading
internet sites, visiting usenet and
reading information via e-mail. The usenet group is at
sci.med.diseases.hepatitis.
To get informtion, I first had to learn to spell
"hepatitis." I thought it was "hepatitus and my
searches were not turning up anything.
Some of the symptoms of liver disease I have are
unexplainable occasional vomiting and diaahrea, fatigue,
and mental "fogginess" sometimes. My memory is still good,
but I grope for the right words to describe soemthing much
more often than ususal. These days, I can only spend about
an hour on the internet before I get really tired.
This is another one of those times in your life when you
find out who your real friends are. I am sad that
over the years I have found out that most people are "fair
weather" friends. My fatigue is called "laziness" by many
people and I have been really hurt by a number of comments.
I often say that I look forward to Judgment Day. The
thought of Judgment Day is scary to many people, but I
think of it as a day when I will be vindicated!
I will be adding to this "diary."
Biopsy Day
Biopsy day, May 13, turned into a two-day event. The first
day, I arrived at the hospital with my brother and was
admitted to an "outpatient" room. At LSU there is a whole
area for patients who come in for "day" procedures, like
liver biopsies and dialysis.
Then the wait began. I was "thumped" like a melon several
times to determine where to do the "stick." Finally, a
"committee" determined that I didn't have much to aim at
and to minimize the chances of hitting lung or colon tissue
a guided procedure was called for. So, I was scheduled for
a transjugular procedure May 14 and sent home for the
night.
May 14, I was shown to the same room and at 8:00 a.m. told
that the transjugular procedure had been cancelled for me
because I had made such a face (I swear I tried to keep a
hstraight face.) Arrangments were made for me to have a
sonogram guided procedure.
I tried to sleep while I waited, but hospitals are pretty
noisy during the day. By noon I was exhausted from getting
up at four a.m. for two days straight to get to the
hospital on time, anxiety, hunger and I was having a REALLY
bad allergy day. I decided I was not in shape for a
"procedure" and asked if I could go home, rest for a few
days and come back.
A physician finally came and asked me to stay. She
explained that they believed half of my liver was already
lost to cirrhosis (Did I spell that correctly?) and they
needed to do something for me quickly or I would die. That
was shocking. I have probably only had HCV for 15 years
and many patients have HCV 20 or 30 years without
significant cirrhosis. I was not expecting to be an
exception. They wanted to do my biopsy ASAP to determine
is interferon treatment is worth it for me or if I need to
be put on the liver transplant list.
So I stayed.
She said they could put up with me being tired to the point
of being looney and coughing.
Finally, my turn at the sonogram arrived. The procedure
involved more "sticks" than I had expected. At least they
explained it all to me ahead of time (except the last
stick.) First there was the stick to deaden the skin.
Then one I had not expected based on previous explanations.
Another stick to deaden the liver membrane. Then the GI
doctor told me they would like to take two tissue samples
to make sure they had plenty for all the tests they want to
run on me. They want to see if my liver is worth saving.
So I agreed. After all that was done, they were going for
the third sample. I asked why. They said the second
sample attempt had not been successful. I think I had a
panic attack about then. I wasn't watching, but the
conversation and what I felt was very unnerving. Things
like, "That piece looks good," and then you feel them move
the needle that way. By the time, they were through, I was
cold, shaking, and gasping for breath. I was certain they
had punctured my lungs. But it was just a panic
attack.
I had been told to lay on my right side
after the procedure to put pressure on the liver to help
reduce bleeding. The physicians in the sonogram area did
not seem too concerned about that. I asked for help in
getting on my side and they didn't seem to understand why.
And no one helped me and I couldn't do it by myself. So I
asked them to hurry and get me back to my room, so I could
start laying on my side. I like to help myself in
non-painful ways. No one hurried though, and that added to
my anxiety.
But, I finally got back to my room and was able to sleep
for several hours and then eat and go home. I am typing
this five days after the biopsy and I am still some bruised
and the "holes" are closed, but visible. It is odd - the
bruise is below the holes. I have terrible bruises on my
arms where they tried to put IV's. My hand is sore where
they successfully put an IV, but it is not bruised. I have
experienced very little soreness and no drainage or
swelling.
Biopsy Side Effects
Well, I had little or no side effects from the biopsy until
about three weeks afterward. The weather has gotten hotter
and when I am active, I now get very numb in the area.
Sometimes it feels like a large worm has taken up residence
in the area, also. The numbness spreads up my right side
and down the right arm. Its kind of like you went to the
dentist and got the wrong area numbed.
After a week of this, I finally went to the emergency room
of the local hospital. Yes, I know this wasn't an
emergency, but it takes a week to see a doctor. And for
all I knew I might be having an emergency. I was the only
patient there. We joked that everyone was at the opening
of the new Super Wal-Mart in our town.
After a couple of X-rays and some blood tests, I was
announced fit. Even my liver enzymes were normal which
meant my liver was actually functioning pretty well. The
doctor said it was very unusual to start having numbness
three weeks after the biopsy, but there didn't seem to be
another reason for it unless it was related to my gall
bladder. He just said to make sure that I told the staff
at LSU about the numbness when I went there on June 23 for
my biopsy results
Biopsy Results
June 23, 1999. I was terrified. I don't want to have a
liver transplant and I didn't know what I'd do if they told
me I needed one.
Oh, well, I'm not there yet.
I have mild early
portal fibrosis, Grade II stage 1 with focal piecemeal
necrosis. Don't ask me to translate. I do know that this
is a lot better than late severe cirrhosis. I will begin
treatment with Rebetron in July. They took more blood for
geneotype testing.
An intersting aside to this story is that I have been
assigned to Dr.
John King at LSUMC. I first met Dr. John King 15 years
ago when I had my first hip replacements and he was in
hematology. I had had two pints of blood times two hip
replacements that spring. I was in the hospital quite a
while being treated for an infection. I had other odd
symptoms like a low-grade fever and night sweats. Dr. King
was called in as a consultant. No explanation was ever
found for these symptoms which are now recognized as
symptoms of recent HCV infection. So it is a kind of
justice that Dr. King get to treat me for this virus that
we can now recognize. May Dr. King and I will have the
last word and not the Hep C Virus!!
Pre-Interferon Hell
I have read about "Interferon Hell," difficult times due to
side effects of treatment. Last week my daughter asked me
if there was a such thing as "Pre-Interferon Hell?" I
guess there is.
Running around trying to do as many errands as I can before
I start treatment, just in case I do have bad side effects,
and being tired of listening to people tell about their
friends with Hepatitis is driving me bananas. In the first
place, I am tired and now I have to do more to fight this
virus that is causing me to be tired. And in the second
place, after listening to people's stories I think they are
mostly talking about Hepatitis B and are confused. And I am
tired of being polite while being misinformed.
I am trying to remember to buy all of the things I might
want if I have the "flu" symptoms. And I am wondering how
all these things will get paid for. We live pay check to
pay check and there really is no money for extra stuff and
medical care. An absolute must for bill-paying is the
Internet Service Provider. Over the net I have "met" other
heppies, heppers, hepcats (take your pick) who are
well-informed and understanding.
I am sick of the stupid things non-heppers have said to me.
Did you know I gave myself this virus? Yes, I have been
told that. Last spring when the doctors told me I had
Hepatitis C, I got on the internet and read about it.
That's how I got it - the "Power of Suggestion." And now I
have been told that I will have nausea because I have
purchased ginger ale and crackers to eat if I do have
nausea. I just wanted to stock up because its a lot easier to shop before you are sick than while you are sick. If you can get the "anger" side effect before
hand, I have it, too.
I believe some people are being ugly to me to make me "Pull
Myself Up By My Bootstraps." And you know, this is really
not the time for that kind of thinking. But, I am not
responsible for goes on in other people's heads. I have
been raising my daughter by myself, I guess I will fight
this thing by myself, too. I will go my own way, which
hopefully, is not too bad of a way. ; ) And I have my
cats.
Next Wednesday, July 14, I start Combo. I have studied the
The
Combo Survival Guide A-Z; it is great! I still have
lots of things to do. My daughter will be living with her
god-parents during the school year. That will be a big
help to me (the biggest!!!!!), but getting the move taken
care of is quite a strain. She has to move about a
thousand miles. She'll be with me for my first five weeks
of treatment. More after start treatment.
Starting Treatment is Not Starting Treatment
Well, this was an easy day! Spent two hours with doctors and go home. No blood drawn for tests, no interferon shots, nothing unpleasant!
First, regular exam by a resident. Have I been sick? No. Look in my eyes to see if they are yellow. Do abdominal exam to see if anything feels swollen. Pretty routine.
Then talked to Dr. King for about an hour and a half. Got the basic intro to HCV and your liver speech. Then we got into how he treats HCV. Because the side effects are severe and everyone gets depressed during treatment, he requires all patients to get a psychiatric exam before treatment and start anti-depressants several weeks before HCV meds. He said some patients are told to take simply St. John's Wort and others more traditional medicines.
Also, he said many patients on Rebetron get the hemorrhaging from the tiniest capillaries visible in the retina. So everyone has to see an ophthamologists before treatment and regularly during treatment. So I have that appointment to go to.
He told me about some other patients. (If you are another patient, it was nothing personal, just generalities about how people handle treatment.) I asked questions about how to I get my meds. Answer, they are delivered by refrigerated truck. That's nice and convenient for me. Its usually kind of fun to get a package. I bet the fun of this package wears off soon. ; )
We talked about shots. I have scar tissue on the sides of both legs from hip replacements and on my stomach from a C-section, so I will have less space to give myself shots. He said he likes for patients to avoid scar tissue.
I will do daily administration of interferon rather than the MWF routine. I had read on the net that daily administration was getting better results. And I will be on treatment for a year. I was expecting six months from what I had read about Rebetron. But Rebetron was originally approved for re-treatment. I am a "naive" patient - this is my first treatment. Maybe that's why I get a year. Or maybe its because studies have shown that a year is better than a shorter period. My goal is to get results, so I will give it my best shot. (pun not intended)
Oh, I found out that I am genotype 1b. That genotype responds well to the ribavirin, I have read. Dr. King said that he has found with this treatment that all genotypes respond about the same, except for black persons with 1a. The results he is getting is about 45% in remission with the noted exception.
I am relieved that I will be watched by so many doctors. That will help me - I won't be having so many questions - and I won't feel so much of the responsibility. This is good so far!!! Be back in a few weeks.
First Month
Took my first shot about 5 p.m. on September 2. I was O.K. until around 11 when I woke up freezing. I was so cold and didn't have a fever - my temp was 98 - so I thought I must be dying and my body was turning cold. So I took my temp every five minutes or so and to see if it was dropping. But it started going up and in thirty minutes was 100. I called my sister-in-law, Katie, to come stay with me. It was scary - a temp going up that fast and I didn't know where it would stop. I took some tylenol and laid back down. In another thirty minutes my temp was 102, but after that it started dropping and I went to sleep. That was the worst night. And I don't think my temp has been over 100 since then. A lot of days it runs in the 99's.
I just couldn't give myself my own shots for almost the whole first month. It seems to me if you follow the directions and do it "like a dart" you won't have as much control over how far it goes in. I just couldn't bring myself to stick myself quickly. After a couple of week on the high dosage of interferon my skin seemed like it was getting tougher and thicker. My friend Pam was doing my shot one evening and when she tried to stick me, it didn't go in. So she did it slowly, pressing it in. The world didn't come to end, I didn't get sick, or any other bad thing. So I decided, I could do it my way - pick a spot and do it very slowly and gently. I've been doing my own shots ever since. I don't think it hurts any more doing it slowly. Sometimes it stings a little when the skin breaks, but its just a nano-second and sometimes the medicine stings as it goes in, but that can't be helped. I usually let my shot sit out of the frig for twenty to thirty minutes before injecting. That way the medicine isn't as cold and doesn't sting as much.
After a month, my blood tests came back great - no viral load, and normal liver enzymes. I was shocked. I had expected good results, but several months down the road.
Other things I have done to help myself is drink fresh squeezed lemonade and purple grape juice. Fresh lemonade is supposed to have anti-viral qualities and purple grape juice has some of the same chemicals as milk thistle, which is generally recognized as being good for the liver. My taste has changed during treatment and I can't bear the sight of the grape juice now because it is just too sweet for me. I can adjust the sweetness of the lemonade.
I am very thirsty and must drink some sports drink almost daily along with many glasses of water. When I don't add the sports drink to my diet, its like I am dehydrating no matter how much water I drink.
I am now in my seventh week of treatment. I didn't update this page for awhile because I felt so bad. I've gotten behind on evertyhing. Oh well, I'll eventually catch up. ; )
Well, I am in my ninth month now and am not caught up. For awhile, I couldn't use my keyboard or even begin to use html.
Petition SSA
I am sponsoring a petition (I just had to fill in the blanks) for persons with HCV to qualify for help from the Social Security Administration. The online petition is at I-Charity.net. A copy suitable for printing is here and a personal letter you can use is here . Mail the petition to the address on the letter. Thanks! And send copies to your senators and congresspersons!!
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