ME AND MY HEP C- Battle With The Dragon

Part Two

MY BATTLE WITH THE DRAGON


My name is Sandy. In 1999 I was diagnosed with Hepatitis C. Hep C for short. In the first part of this story, ME AND MY HEP C, My Dance With The Dragon, I wrote about what it is like to have this debilitating disease Hepatitis C and how it destroys a person's quality of life. If you want to know more about the virus Hepatitis C, I also wrote THE WORLD ACCORDING TO HEPATITIS C, which has information about this Silent Epidemic.

The following is about the Peg-intron/Rebetol treatment for Hep C I went through. This is how the treatment affected me and how I dealt with it. This is not meant for use as medical advice. Please remember that the Peg-intron/Rebetol treatment affects everyone a little differently. What I write is not meant to encourage or discourage your decisions about the Peg-intron/Rebetol treatment. That decision you must make within yourself. It is your life.



PEGINTRON- REBETOL TREATMENT
Weapon To Battle a Dragon

The current treatment recommended for HCV is an injected long-acting interferon plus oral ribavarin. Treatment has improved considerably in the last decade but is still only effective in 40 to 60 percent of patients. There can be potentially severe side effects (e.g., nausea, severe fatigue, depression and, in some cases, suicidal impulses). A single 48-week treatment course costs more than $30,000. Previous analyses have found that treating HCV is clinically beneficial and cost-effective, on average, in patients infected with HCV and with evidence of existing liver disease

The most common side affects experianced during therapy are "flu-like" symptoms, such as headache, fatigue, myalgia, and fever, which appear to decrease in severity as treatment continues. There can also be side affects such as severe psychiatric adverse events, including depression, psychoses, aggressive behavior, hallucinations, violent behavior (suicidal ideation, suicidal attempts, suicides), and rare instances of homicidal ideation have occurred during combination REBETOL/INTRON A therapy, both in patients with and without a previous psychiatric disorder.

The treatment regime I was to follow; 1 Peg-intron shot a week. 5 Rebetol pills a day, 3 in the morning 2 in the evening.


STARTING THE TREATMENT
Let The Battle Begin

To help build my strength before starting the treatment Danny and I started riding bikes on the weekends. The day I was to start the treatment my legs were swollen from Edema and I was running a 101 temperature. It is so embarrassing when my legs swell like this, my ankles disappear. I call this the Hep C uglies. Just one of the many ways this virus affects your appearance. I am use to having fevers since I seem to have them most of the time.

THE FIRST SHOT
Ready, Aim, Fire At The Dragon

July 2, 2004 Friday, I did the first Peg-intron shot and took the first of the Rebetol pills. I waited till evening, just before I was going to bed to do the first shot. I had been told that this is the best time so hopefully I would be able to sleep through any unpleasant side affects I might have. I have read so many things about the unpleasant side affects caused by these drugs and I was not sure what was going to happen

Danny is going to be giving me the shots. Yes, I am a coward about giving myself a shot. In fact I paced back and forth through the house for about a half hour before I was able to say, "Ok lets do this". We decided on Friday as being best in case I become sick from the shot Danny would be home to help me.

After the first shot I felt fine. I watched Comedy Central for a while, still no side effects. I decided to go to bed and see how I felt in the morning. When I woke up the following morning there were still no side affects. I thought something had gone wrong. I would have to wait till Tuesday to call my doctors office to make sure everything had gone ok since this was the fourth of July weekend and Monday a holiday.

Dr. Daniel Phillips is my Hep C doctor. It is Suzie a Triage Nurse at Dr Phillips office I talk to. I like Suzie. She is a special lady who understands that it can be a little frightening to have Hep C and going through the Peg-intron/Rebetol treatment. She has been a tremendous help to me. She is an intelligent compassionate person who has a patient's best interest in mind, which is why I always do what Suzie tells me to do. She assured me that everything went ok with my first shot. That side affects sometimes started after a couple of shots. I feel better knowing everything is ok.

The Edema in my legs was gone. I had ankles. Ankles, yes! I had lost a lot of the puffiness and felt like my skin fit me instead of tight and uncomfortable. I was feeling almost healthy for a change. I was going bike riding, taking walks, enjoying the summer and this short reprieve from what was to come.

FRIDAY NIGHT AGAIN SO SOON?
The Second Shot Fired at the Dragon

The second shot was different. Shortly after Danny gave me the shot for just a moment I had a hot flash and was sick to my stomach. Then this was gone as fast as it had started. I became sleepy so I kissed Danny good night and was a sleep as soon as I was in my bed. I slept through the night, something I do not normally do.

And James Brown sings, "I Feel Good!" It's morning, the sun is shinning, and I feel great! Had French toast, took my 3 Rebetol pills. Danny and I loaded our bikes in the back of the pick up, I grabbed a couple bottles of water and we headed for Dorena Lake. A Rails to Trails runs along the lake that is excellent for bike riding. We both ride 18-speed mountain bikes.

This is when I experienced the first side affect. The Rebetol pills made me shaky. I was riding my bike along the lake when I first felt the shaking begin. It gradually became worse until I had to stop my bike because I was shaking too much to balance. After I managed to get my bike stopped I was shaking too much to get off of it. I needed help. Riding my bike after taking the Rebetol was out. I had to get use to the fact that in the morning after taking the Rebetol pills I could not do much due to the uncontrollable shaking I experienced.

I had energy and for the first time in a long time I did not feel sick. I felt weird from the treatment, but not sick. Like Charlie Brown's dog Snoopy, I felt like dancing in circles.

ANOTHER FRIDAY NIGHT
Another Shot Fired at the Dragon

I do not look forward to Friday nights and The Shot. It seems every shot is a little different, so I never really know what to expect. I felt fine after the third shot. In fact I had a burst of nervous energy and I could not sit still. This took a while to wear off before I could crawl into my bed and go to sleep.

I woke up the next morning still full of energy. Thought I would out smart this Rebetol thing by going for the bike ride before breakfast and taking the pills. Out to the lake with a couple of bottles of water and the bikes in the back of the pick up. I could ride my bike with out shaking. I thought I was so smart. Boy! Was I wrong.

I got home, had breakfast then took the Rebetol pills. Everything was fine...till that evening. Then the burn started. It started like heartburn only more intense. I have acid reflux, this was worse and it burned all the way through. I did not remember reading about this as a side affect.

Monday I called Dr Phillips office about the burn. He wanted me to pick up samples of aciphex and start taking them until he could get approval from Oregon Health Plan my medical insurance for me to have this prescription, which they had previously denied. I was now paying for that denial with my health and unnecessary suffering. Dr. Phillips made sure I had the aciphex I needed.

I receive the Peg-intron and Rebetol shipped to my home for free through the Schering- Plough Corporation because the Oregon Health Plan also denied me to have this prescription. Schering-Plough offers a Be In Charge program for those taking these drugs. This is where I met Kathleen, my personal nurse. She would call me to make sure I was doing ok. I always looked forward to these calls, and she was very helpful. This time I called her about the burning I had experienced. That great idea I had about riding my bike on Saturday mornings after the Friday night shot with out eating first. Bad idea. I needed to slow down my Saturdays because I was kicking things through my system to fast. She told me to park the bike on Saturdays and follow my doctor's advice.

Taking aciphex daily, watching what I ate and drinking lots of water helped with the burning. The following Saturday I experienced a little burn after the Friday shot and that was the end of that side affect. I just need to take the aciphex and to take it a little easy on Saturdays. Oregon Health Plan eventually approved the prescription for aciphex I needed.

I kept up with my blood work and the results showed I was getting well and my viral count was dropping rapidly. It appeared everything was going well. Appearances can be deceiving.

The next side affect was the burning inside my mouth and the skin on my face around my mouth causing lesions in my mouth making it painful to eat. While on interferon your mouth will become dry. This adds to bacterial growth and my mouth problems. This side affect was harder to deal with. A prescription of Lidocaine, Mylanta and Benadryl mixture helped with the pain in my mouth. I was now on a diet of Ensure, pudding, soup, anything soft with out spice or much salt. Spices burned the sores in my mouth. It would take my mouth almost three months to completely heal. I became so hungry for normal food.

One of the causes for the lesions in my mouth from these drugs not to heal was due to the fact that I have false teeth. Hep C related severe Anemia I had suffered from caused my teeth to become weak and break. All my teeth had to be pulled and false ones put in. Hep C weight gain a lot of water retention and I was at my all time high in weight when this happened Since then I lost the puffy water weight and the Peg-intron/Rebetol treatment caused me to lose a lot more weight. My teeth no longer fit properly and they rubbed against the lesions. This adds to the pain and slows the healing. I started running fevers because of the problems with my mouth and I got a fever blister from hell. My teeth needed to be refitted. The Oregon Health Plan gave the approval for me to have these teeth. They will not approve to have them refitted properly. Teeth not fitting properly is one of the biggest reasons for oral mouth cancer. Who is in charge of this health plan?

Then my hair started to fall out. At first it was just a few strands of hair and then it was a hand full of hair every day. Thank God my hair was thick. The side affects from this treatment was starting to get the best of me. The Dragon had raised its angry head and was fighting back.

TRIP TO THE EDGE OF MY SANITY
On the Wings of My Dragon

She thought she had lost her mind
It was there all the time
No one bothered to tell her so

The worst side affect I experienced was emotional depression and the daily anxiety attacks. This I did not tell my doctor about at the time. I thought I could handle it and I guess I did. But, it was Hell. I believe I have seen the edge of my sanity. Every painful emotion I thought I had dealt with and put away came welling back up. All the insecurities and fears were back. I felt lost. I could not remember from moment to moment what I was doing. Just getting dressed became a major challenge everyday. I am not a person who cries easily. During this time at the edge of my sanity it seemed as if I cried all the time. The pains of life were overwhelming a normally happy person.

When I first started this emotional slip I did not really notice. Once I was aware I was slipping I felt helpless to stop it. The slip did not stop till I stopped the treatment. It was not till I came back from the edge of my sanity that I realized just how bad it had been. I never want to go back.


12-WEEK EVALUATION
Dragon Fights Back

A 12-week evaluation is when a patient's response to the treatment and the side affects is evaluated. Early Virologic Response EVR at 12 weeks provides doctors with an early indicator for the likelihood of a patient eradicating the hepatitis C virus from the blood at the end of treatment. EVR is defined as at least a 99 percent (>2 log10) reduction in hepatitis C virus load (number of hepatitis C virus particles in the blood) at week 12 of therapy.

I was having problems with the side affects I was experiencing. This blood test result showed my health had stopped improving. I had also stopped responding to the treatment. As not to compromise my health, Dr. Phillips wanted me to discontinue the Peg-intron/Rebetol.

It had taken me four years to regain my health enough to be able to do this treatment. It felt like a lifeline was being jerked away. What would happen to me now? I want to get well. I was a little scared and did not want to let go of the lifeline yet. I asked Dr. Phillips not to have me stop the treatment just yet. He is an understanding man and lets me have my way. I need time to think about all of this.

SOMETHING NEW
New Weapon to Fight a Dragon

Dr Phillips told me about a new treatment for non-responders like me called consensus infergen. He explained to me that this was fairly new and asked me if I would be interested in trying this. I did a little on line research about the consensus infergen treatment and it seems to be worth trying

Infergen is a consensus interferon and is different from other interferons used to treat hepatitis C. Infergen can be effective in non-responders like myself or those who have relapsed following treatment with other interferons.

I soon come to my senses and decide to follow Dr Phillips advice knowing I can trust him to do what is best for me. I sent him a letter apologizing for my indecisions. Thanking him for giving me a chance to think, I let him know that I was ready to go along with his decisions regarding my health. His response conveys he understands and no apologies needed.

DECISION ABOUT DR. PHILLIPS
The Dragon Slayer

When I met Dr Phillips in 2003, he was the first doctor I had met who actually knew what Hep C was. I thought he might be a good Hep C doctor. I did some research on Dr. Phillips and I found something he wrote. When I finished reading this piece I knew then that I wanted the man that wrote this to be my doctor. The following is what I found.

Dear PCC member, The following is a well-written opinion editorial by Dr Daniel Phillips, a Eugene physician specializing in Gastroenteroly. This appeared December 2 in the Eugene (Oregon) Register-Guard. Please share this with anyone who may find it of interest. William L. Toffler MD National Director, Physicians for Compassionate Care >>
December 2, 1999

Commentary: Doctor-assisted suicide affects us all - negatively By DANIEL PHILLIPS
COLUMNIST STEVE DUIN WRITES in a column in The Oregonian that was reprinted in The Register-Guard on Nov. 15 that physician-assisted suicide is a personal decision that is nobody else's business. By implication, he believes that the rest of society is not harmed by Oregon's law that permits physician-assisted suicide to occur. On the contrary, the case Duin made reference to demonstrates that we are all harmed by physician-assisted suicide. The story was reported in The Oregonian on Oct. 17. It described the case of an elderly woman with cancer who requested, and ultimately received, physician-assisted suicide. A psychiatrist evaluated her and felt that she was cognitively impaired and that her family appeared to be pressuring her. The conclusion was that she was not a candidate for assisted suicide. Her daughter requested a second opinion. A psychologist evaluated the mother, thought she was competent, but noted the daughter "may be somewhat coercive." Because there were differing opinions, a Kaiser Permanente Health System administrator made the final decision that she was eligible for assisted suicide. On Aug. 29, the daughter reported, at her mother's request she prepared the lethal medication. Her mother took it and died that day. Two features make this case a special cause for concern. Both of the mental health professionals who evaluated the situation felt there were elements of coercion involved in this woman's decision to take her own life. Second, a Kaiser Permanente Health System administrator made the final decision about her eligibility for physician assisted suicide - not the patient's original family physician, not her treating oncologist and not the psychiatrist who originally evaluated the patient. This administrator, while reportedly an ethicist, and who we have no reason to believe acted other than with good intent, had a conflict of interest. A health care system that is likely to benefit financially by this patient's premature death pays the administrator's salary. But how are we, as a society, harmed by this? What occurred was a violation of the spirit, if not the letter, of the law that Oregon voters passed. Proponents stated the law would not permit the coercion of individuals to commit suicide. Unfortunately, the safeguards did not work. In fact, they were doomed to failure from the beginning. Legalizing physician-assisted suicide made coercion inevitable. We have no way of knowing what was said behind closed doors in this or other cases of physician assisted suicide that may have compelled a "suicide." It should go without saying that society is harmed when we fail to protect individuals from the acts of others that would terminate their life prematurely. One cannot defend what happened by saying it doesn't matter because the individual had a terminal illness. If it is wrong to pressure a person into committing suicide, it is wrong no matter what their life expectancy. To believe otherwise removes a whole class from protection by the laws of the state. To accept this means that murder of the terminally ill would not be a crime. Oregon law allowed physician-assisted suicide to occur in a situation where there was real doubt that the victim's choice was a free one. However, even if it was a free choice, society is still harmed. Committing suicide has never been the issue. Before Oregon passed the law permitting physician-assisted suicide, there was no law, nor should there have been one, prohibiting suicide, as wrong as anyone may personally believe it to be. But that is not the issue here. The issue is state-sanctioned, physician assisted suicide. This state is now on record as saying that it is proper for physicians to administer death. This affects us all. It appropriately introduces an element of distrust into the relationship between physician and patient. A person should not have to wonder: Will my physician be there for me at the end and use whatever dosage of pain medicine is necessary to control my symptoms, or will my physician avoid the hassle and offer me suicide instead? When we medicalize suicide, it allows us to think of this as a normal part of the caring process. The result is to further desensitize society to the taking of human life. Physician-assisted suicide is a giant step toward euthanasia. The logic is quite clear: If physician-assisted suicide is a right, how we can we deny this right to those who are not able to swallow the pills? To be "fair" they will need to be offered a lethal injection. Physician-assisted suicide has one last negative consequence. While controversy over physician-assisted suicide has had a positive outcome in the short run by focusing attention on care of the terminally ill, in the long run, we will make far less progress as long as the simple expedient exists of removing them. The dearth of hospice care in the Netherlands where physician-assisted suicide is allowed speaks eloquently of that. The story of this one woman should cause us all to reflect on the Pandora's box we opened in voting in Oregon's law.
Dr. Daniel Phillips is a Eugene physician specializing in gastroenterology.

Copyright © 1999 The Register-Guard

Thank you Dr. Phillips for giving me permission to include your opinion editorial in my story.

END OF TREATMENT
Round One Goes to the Dragon

I have stopped the Peg-intron/Rebetol treatment. My mouth has finally healed and I can eat normal food again. My hair is coming back darker and thicker than before. I go for a walk everyday and I am feeling stronger. Maybe the Dragon did win this round. I have faith in my doctor the Dragon slayer. The Battle with my Dragon is not over.