ME AND MY HEP C- Dancing With The Dragon

Part One

MY DANCE WITH THE DRAGON


The greatest mistake a person can make is to sacrifice health for any other advantage


My name is Sandy. I live in Cottage Grove, Oregon, which has just named, "All
American City" for the second time. I am a Daughter, Girlfriend, Mother, Grandmother, Step-Mother, and Friend. I am a 51 year old Scorpio. I have my own Business. I own my home and car. I also have Hepatitis C. Hep C for short.

Hepatitis C virus is referred to as the Dragon. 2004 I started wearing a small Dragon on a leather string around my neck. A constant reminder of the Battle with the Dragon I am preparing for.


Hepatitis C. A debilitating illness with the potential to be fatal. The Silent Killer, an epidemic larger than Aids.


DIAGNOSED 1999
Introducing the Dragon

Sitting in one of the examination rooms at my doctor's office. I'm waiting to hear the results of my blood test. Dr. Kincade is my doctor. He has been my Doctor for about 10 years. I have always really liked him and feel I can trust him. He was also President of the Oregon Medical Association. Can't get much better than that.

I remember he walked into the room and he began to tell me the results of my blood test. Such a strange sensation. Am I in a dream? Dr kincade is talking to me. "What was that he just said?" The room is beginning to tilt. Yes, this must be a dream. He just said I have Hepatitis C. This can't be real.

But, I am awake, and this is real.

I have Hepatitis C. What happens now?

WHAT IT IS LIKE TO HAVE HEPATITIS C
Living with the Dragon

If you asked me to use one word to describe what it is like to have Hep C, that word would be nauseated.

I feel like I have the forever flu. Some days I feel kinda good. Only a little tired and only a little nauseated. Then there are the other days. The days and the nights when the Dragon once again raises it's head reminding me that I am sick. I run a fever and get the chills. My joints ache, especially my left hip. My head hurts and I can not think clear. I get nauseated and do not want to move much. Do not have the energy anyway. I hate feeling like this. I get so tired I just want to sleep till it goes away. It never goes completely away. The Dragon is always there.

IT WAS THE TIME OF THE LONG SLEEP
Sleeping with the Dragon

There are four years of my life that I remember very little of because I was sleeping all the time. Hep C and severe anemia left me weak and without energy. I slept. For hours, days, I slept. When I was awake I was sick. I ran fevers all the time. I hurt from heard to toe and the headaches were always there.

I would see people going places and doing things, living their lives. I remember when I had that kind of energy. What has happened to me? Where has my life gone? Did I commit some horrible sin that pissed God off? I am too tired to think about it. I am going back to sleep

The Dragon has raised its angry head again, reminding me there is still a battle to be fought. For now, the Dragon controls my life, not me.

It is Thursday. That means I have been sick in bed for the last five days. I laid on my bed and watched TV. Then slept, and slept some more. For a few days, meals were brought to my bedroom for me. Room service.

I have been running fevers again. Sweating and burning up one moment, then wet and freezing cold the next. My head aches all the time. My body hurts from head to toe, especially my hips, which are throbbing, from being in bed so many days. I am tired all the time and cannot stay awake very long. So I sleep and sleep and sleep.

While I have been sleeping, life is going on in the world outside my bedroom door. I sleep while the clocks keep up their faithful ticking of the minutes away. They say, "Time waits for no one," Not even one who sleeps. Ole' Rip Van Winkle and I, we seem to have something in common.

Maybe tomorrow I will feel better.

The following is meant to be read with sarcasm, lots of it.

I awoke this morning to the sounds of spring birds singing their sweet songs. I sat up and thought to my self, "Oh, what a glorious day".

I woke up this morning, felt like s--t. Pulled the covers over my head. Please do not wake me up till I feel better. Will I ever feel better?

DEPRESSION
Dragoned

Depression. When I no longer cared if I woke up in the morning. That was my depression. It was not that I wanted to die. For a long time I just did not care if I woke up.

Depression. When I was sick everyday, some day's worse then others. Day after day, week after week, month after month and now year after year I became depressed. I did not have a life anymore. All I did was sleep.

I never felt like going anywhere. I was too sick to go anywhere. I stayed home almost all the time. It seems that the only place I ever did go was to one of my doctors.

My friends became scarce. One friend explained it to me; people do not know how to act or what to say to someone who is so sick. I may be sick, but I have not changed. I am still the same person who likes to exchange important information (gossip) with friends. I now know who my true and loyal friends are. One hell of a way to find out.

It felt like I was dying. And of course I was depressed and I was scared; Scared, hell, I was terrified. It felt as if my life was slipping into this deep dark pit of nothing and death was waiting at the bottom. I swear I heard him laughing.

Depression. According to Webster, a falling in or sinking. Yeh, that is pretty much how I felt.

A GOOD DAY
Shhh!!! The Dragon is sleeping

Today is January 15, 2002. It is cold out side today. I have one of those headaches that I get just before a storm. It is cold enough we could get snow. I hope we get snow. I love taking a walk at night after a new snowfall. The world can seem peaceful.

Today has been a good day so far. I am awake and that is a big plus.

Kaleb, my 3-year-old grandson and I went to River Road where the ducks are today. We took a bunch of crackers so we could feed them. There is always a feeding frenzied when anyone feeds the ducks. Actually it is ducks and geese all scrambling after every piece of bread or cracker tossed. I keep Kaleb close to me in case any of the ducks or geese becomes aggressive.

While Kaleb and I were tossing crackers around a lady pushing a baby girl in a stroller walked up. She had a bag of breadcrumbs that she was feeding to the ducks and geese. Her little girl was clapping her hands, laughing and squealing with excitement.

When someone stopped in a car long enough to throw some more breadcrumbs, ducks and geese were running in every direction. Kaleb and I have fun feeding the ducks and geese. He really enjoys this. We will be going back.

For the last couple of years I never had a good day that was this good. A good day use to be if I felt good enough to brush my hair. Today was a good day because I felt good enough to take Kaleb to feed the ducks and geese.

Still have a headache. I think I will take a long hot bath. I will light some candles put on a Sade (Sweetest Taboo) or Wallflower (One headlight) CD. Gotta have bubbles. This is soothing and helps the head ach go away. Helps with the body pain I seem to have every day.

AUGUST 2003
The Dragon Slayer

I woke up during the night and I was so sick to my stomach. I do not throw up. I was going to throw up. Every thing is spinning and I just hope I can make it into the bathroom. I was throwing up blood and lots of it. I knew I was in trouble. I had my boyfriend, Danny call 911.

I was still throwing up blood when the ambulance got to our home. It would not stop.

It is twenty miles to Sacred Heart Hospital from my home in Cottage Grove. I remember the ambulance attendant riding in back with me said we were almost to the hospital. I mentioned at least they had not needed to use the sirens and lights. The ambulance attendant asked, "Sandy, can't you see the lights flashing?" For the first time I noticed the lights flashing as I slipped in to a deep darkness.

I was unconscious in the emergency room of Sacred Heart Hospital. I could hear someone saying, "wake up, you need to tell us who you are". I was still in the darkness. I did not want to wake up. Just leave me here.

The only thing anyone at the hospital knew about me was my name was Sandy and I was brought by ambulance from Cottage Grove.

I was still unconscious in the emergency room when I heard a man's voice talking to me. The things he was saying, he knows what he is talking about. Who was this voice? I started waking up a little and tried to focus on the voice. He kept pacing around me as he talked. This was the first Doctor who actually knew what the words Hepatitis C meant. Or did I dream this?

I was given something in my IV and had some strange dreams. Alice, am I in the looking glass? Nothing is real. Dreams and reality are one. Please, no more morphine.

This was on of the luckiest nights of my life. Dr. Daniel Phillips was there at Sacred Heart hospital that night and he took care of me. His was the voice I heard while in Emergency. I did not know it at the time, he would help me prepare to do battle against the Dragon.

I have been waking up and feeling good since that last little trip to the hospital. Dr. Phillips said he would help me get well enough to do the treatment for Hep C. I'm tired of sleeping my life away.

Since then Dr Phillips has been my Hep C Doctor.

2004 I WAS AWAKE TO RING IN THE NEW YEAR
A Good Year to Battle the Dragon

The moment the world changed to 2004 I was awake and feeling good. Sometimes I almost forget I am sick. I said almost. I have slow days and I just kick it at home. Sometimes I stay in my nightgown all day and watch TV or write. Sometimes I feel a little sick and a nap works. A short nap. Not like the long ones I use to take for a day or two.

I mostly have productive days, which I really enjoy. These are days I have energy and I feel good. I can not sit still. I am always afraid I will be sick again tomorrow. I want to do everything today while I can.

In Cottage Grove, Oregon, the arrival of 2004 was celebrated with a display of fireworks exploding in the midnight sky. Just before midnight I went outside to watch and hear the New Year celebrations. The fireworks started exploding first from one side of town then the other side. These were the illegal fireworks. There where more illegal fire works tonight then there were on the fourth of July. I can see the I-5 freeway from where I live. The traffic was actually slowing down a bit to see the fire works. Strings of Firecrackers popping everywhere. People yelling," Happy New Year". It was fantastic to be able to be a part of this even if only by watching. Happy 2004, I am awake!

I finally have a Doctor I believe will help me to get well. That's a lot of trust to put in one person. It is my life. I am awake and feeling pretty good lately, thanks to Dr Daniel Phillips. Sometimes I wonder if he really understands the gift he gives people when he helps them get their health back so they can live their lives again. I understand that gift completely. I am living my life again. Thank you Dr. Phillips.

I can not help but hope this will be the year of recovery or at least getting better. Of new things to come. Of living again. So far 2004 is off to a good start.

HEP C TREATMENT
Weapon to Battle the Dragon

The treatment for Hepatitis C is called interferon. This is not a cure. It causes the virus to go into remission in people who respond.

Interferon kicks the immune system into high gear, but it has a long list of potentially serious, even fatal side affects. I needed to deal with my health issues before I would be able to start treatment.

I AM FINALY ABLE TO DO THE TREATMENT
I Have Danced Well with the Dragon

It's been four years of trying to get well enough to be able to do the Hepatitis C Pegintron/ Rebetol treatment. Four years of endoscopies, colonoscopy, and heart stress test. Imaging of the liver, liver biopsies, and throat biopsies. Emergency room visits, hospital stays and gallbladder surgery. I even had an MRI done of my head. I had severe anemia, severe edema in my legs. Barrett's esophagus, a bleeding ulcerated esophagus, hiatal hernia, acid reflux. My thyroid stopped functioning. I was on cancer watch for my throat for a while.

Finally I have made it through all of these hurdles. I am well enough to do the Peg-intron/ Rebetol combo treatment. I have danced well with the Dragon. At last I will have a chance to get well. I am ready to start the treatment. It has been a long hard road to reach this point. I am prepared to battle the Dragon

THE LETTER FROM LIPA FOR OHP READ...DENIED
The Dragon's Laugh

Dr Phillips office submitted to LIPA for the Oregon Health Plan a request for a prescription of Pegintron and Rebetol for me. Coverage for me to have this prescription was denied.

Oregon Health Plan is being sued because of mistakes made by those in control. Cuts in the budget for Oregonian's medical coverage is how the lawsuit gets paid.
I am supposed to wait until August to see if I will still have health insurance. This is June. I know it does not seem like long to wait. I have waited. The longer I wait, the closer I get to dying. Unfortunately I am not dying fast enough to fit their criteria at this time.

What happens in August if my health insurance is cut? Will I fit the criteria to have a chance? Will the Dragon win?

To say I am angry would be an understatement. I realize that there are many others facing situations as bad and worse with health issues. I am still pissed off about this bullshit.

For now the dance with the Dragon goes on.

It is a little frightening to have Hepatitis C. It is a debilitating illness, left untreated is terminal. The treatment it's self is a little frightening. The treatment is not a cure. It will only put Hepatitis C in remission. You can win the battle, but you will not win the war. But, a battle won means life, hopefully until someone learns how to win the war.

My emotions are numb. Do not want to feel anything at all right now. F--k this s--t. Grab the car keys, out the door. Turn up the tunes, way up. Head out of town and into the mountains. I stopped at the Dorena dam and watched an Osprey watch me. The bird was at the top of the tree balanced on a fir bough that swayed slightly in the breeze. I felt that same breeze on my face.

Ok, God, I get it. Life is still good.

COMMITMENT TO CARE
Allies in Battle

Carol, Dr. Phillip's nurse, told me to get in touch with Commitment to Care. I did. I will never forget the day that Commitment to Care informed me that I qualified to receive the meds I needed for a chance to get well. I just started crying. Me, I do not cry. I could not stop crying. Such a relief to know I have a chance to hold on to my life. Maybe even feel good again.

Yes, it's time to battle the Dragon.

COURAGE
Let the Battle Begin

At last the day has finally arrived that I will do the first shot of Pegintron and start taking the Rebetol. I have read some of the horror stories of how bad the side affects can be. I was not real excited about getting sick again.

Because I have had seizers, heart problems, anemia and thyroid problems, treatment was a little risky. But, ya gotta do what ya gotta do.

The day I planned to start the treatment I had sever edema in my legs and running a 100.05 temperature. I called Dr. Kincade's office about the edema in my legs. They know I am planning to start the Peg-intron combo treatment. Dr Kincade gave the ok to go ahead and do the shot.

If I experience any shortness of breath, I was to go immediately to the hospital.

Ok, that made me a little nervous. I pray to God and so do all my friends.

Lets do this!

I did my first Peg-intron shot and took the first of the Rebetol pills July 2, 2004.