Interferon Interlude
Chapter 1
Chapter 1
September 9, 2009
My friend Pat, who lives in Fresno, is coming here today, and I will return with her tomorrow, to attend a long-awaited Hep C class. I will learn how to give myself shots of interferon, take the companion drug, ribavirin and manage how I will feel as a result, before returning home on Friday. I've started drinking 16 cups of water a day, determined by my weight of 134 pounds, to get my body over-hydrated, which I'm told will make the upcoming treatment easier to endure. I wonder if I can make it all the way to Fresno and back without bush-stops by the road.
September 10
Attended the 90 minute class, conducted by a nurse who added comments to the screen displays describing hepatitis C and the interferon/ribavirin program. Following, she demonstrated how to self-administer the shots with a pad of foam rubber. The class, updated medical reports and agreement from my primary care doctor to monitor me are required for the six month long program, which includes weekly blood draws. A monitor is necessary because Dr. B, the liver specialist headquartered in San Francisco, is closing his office here.
September 17
I called San Francisco, and Al, the hepatology nurse who will be the person I talk to, located the faxed results of my Monday blood draw, the opthalmology report sent last week and the certificate showing I had attended the class in Fresno. But no one had contacted Dr. M, my primary care doctor. Al promised to send a letter right away. The biggest surprise was discovering there is a waiting list for this treatment because each person is closely observed and requires considerable time from the doctor. That explains the long delay for my treatment to begin. Al said to call back in three weeks, but I objected. He reconsidered after I told him I already had the medications and Dr. B wanted me to do this program. Al said the fact that I have the meds would put me ahead on the list and to call back in ten days.
Found out my viral load, which measures how much of the hepatitis C is in my system, was 184,000 on November 24, 2008, which apparently triggered Dr. M's recommendation that I see a liver specialist. Have no idea how bad that is, and Al didn't know or wouldn't say. But it's a base line to determine whether the treatment is doing any good.
September 29
My ten days were up, so I called Al again. He hadn't written the letter asking my primary care doctor if he would be my monitor during the interferon treatment because I hadn't been accepted yet. What?! Seems a team of doctors in San Francisco must agree that it would be worthwhile for me to undergo the interferon program. First I'd heard of that. However, I'm still on the list, and Al thought I'd be considered around the first of the year. Further discussion revealed that Dr. B is concerned about my past heart problems. Al wanted to know why I'm even doing this--he wouldn't advise it for his grandmother. Said the treatment is a terrible thing to go through. I'd feel miserable, the depression is bad, I'd lose weight, be tired all the time, my hair would fall out and it often doesn't work for older people--and I'm the oldest. Since I don't have cirrhosis and I may never progress that far, my life is good, why tamper with it? He promised not to take my name off the list, but wanted me to discuss the matter with my doctor here, as well as my cardiologist. I already have done so with the latter--and he agreed with Al. I'm to find a group currently enduring the treatment and talk to them. I will try to do that and will call Al again October 30. Have also stopped drinking so much water.
October 7, 2009
Discovered on the Internet that my viral load of 184,000 is very low. Above 25,000,000 is very high. A viral load is how many viral particles there are in a ML of blood.
Also found the following:
Diet for liver disease (Alternate Names: Low protein diet, Low sodium diet)
A diet for liver disease provides the vitamins and minerals needed to stay healthy, while at the same time limiting nutrients that will cause further liver damage.
A healthy liver is like a processing plant. Carbohydrates, proteins, fats, vitamins, and minerals all go to the liver where they are broken down and stored. Later, they are remade into whatever the body needs and carried through the bloodstream to wherever they will be used.
Even when the liver is damaged, these nutrients still come to the liver after they have been digested. But, once they arrive, the liver cannot process them and they build up. This build-up causes more liver damage.
A healthy diet for a person with liver disease would include:
a limited amount of protein. A damaged liver cannot process protein very well. This causes a build-up of ammonia in the bloodstream, which can become toxic.
more carbohydrate. Carbohydrate is the body's energy supply. A healthy liver makes glycogen from carbohydrate. The glycogen is then broken down when the body needs energy. A damaged liver cannot do this. Without glycogen, a consistent supply of carbohydrate is needed from the diet to make sure the body has enough energy.
a moderate amount of fat. Fat provides calories, essential fatty acids, and fat-soluble vitamins.
a limited amount of fluids and sodium. Liver damage can cause high blood pressure in the major vein of the liver. This can result in ascites, a fluid build-up in the abdominal cavity. Limiting fluids and sodium can help prevent this.
extra amounts of certain vitamins and minerals. A damaged liver has problems storing many vitamins and minerals.
People with liver disease should also seek the guidance from a physician and registered dietitian, for individualized medical nutrition therapy.
Author: Lanette Meyer, CD
Date Written: 01/11/00
Medical Review: James Hubbard, MD
Date Written: 10/13/2006
Reviewer: Reginald Finger, MDDate Reviewed: 2/2/2007
Contributors
Potential conflict of interest information for reviewers available on request
University of Illinois Medical Center at Chicago © 2006
How I Got Hepatitis C
September 10
Attended the 90 minute class, conducted by a nurse who added comments to the screen displays describing hepatitis C and the interferon/ribavirin program. Following, she demonstrated how to self-administer the shots with a pad of foam rubber. The class, updated medical reports and agreement from my primary care doctor to monitor me are required for the six month long program, which includes weekly blood draws. A monitor is necessary because Dr. B, the liver specialist headquartered in San Francisco, is closing his office here.
September 17
I called San Francisco, and Al, the hepatology nurse who will be the person I talk to, located the faxed results of my Monday blood draw, the opthalmology report sent last week and the certificate showing I had attended the class in Fresno. But no one had contacted Dr. M, my primary care doctor. Al promised to send a letter right away. The biggest surprise was discovering there is a waiting list for this treatment because each person is closely observed and requires considerable time from the doctor. That explains the long delay for my treatment to begin. Al said to call back in three weeks, but I objected. He reconsidered after I told him I already had the medications and Dr. B wanted me to do this program. Al said the fact that I have the meds would put me ahead on the list and to call back in ten days.
Found out my viral load, which measures how much of the hepatitis C is in my system, was 184,000 on November 24, 2008, which apparently triggered Dr. M's recommendation that I see a liver specialist. Have no idea how bad that is, and Al didn't know or wouldn't say. But it's a base line to determine whether the treatment is doing any good.
September 29
My ten days were up, so I called Al again. He hadn't written the letter asking my primary care doctor if he would be my monitor during the interferon treatment because I hadn't been accepted yet. What?! Seems a team of doctors in San Francisco must agree that it would be worthwhile for me to undergo the interferon program. First I'd heard of that. However, I'm still on the list, and Al thought I'd be considered around the first of the year. Further discussion revealed that Dr. B is concerned about my past heart problems. Al wanted to know why I'm even doing this--he wouldn't advise it for his grandmother. Said the treatment is a terrible thing to go through. I'd feel miserable, the depression is bad, I'd lose weight, be tired all the time, my hair would fall out and it often doesn't work for older people--and I'm the oldest. Since I don't have cirrhosis and I may never progress that far, my life is good, why tamper with it? He promised not to take my name off the list, but wanted me to discuss the matter with my doctor here, as well as my cardiologist. I already have done so with the latter--and he agreed with Al. I'm to find a group currently enduring the treatment and talk to them. I will try to do that and will call Al again October 30. Have also stopped drinking so much water.
October 7, 2009
Discovered on the Internet that my viral load of 184,000 is very low. Above 25,000,000 is very high. A viral load is how many viral particles there are in a ML of blood.
Also found the following:
Diet for liver disease (Alternate Names: Low protein diet, Low sodium diet)
A diet for liver disease provides the vitamins and minerals needed to stay healthy, while at the same time limiting nutrients that will cause further liver damage.
A healthy liver is like a processing plant. Carbohydrates, proteins, fats, vitamins, and minerals all go to the liver where they are broken down and stored. Later, they are remade into whatever the body needs and carried through the bloodstream to wherever they will be used.
Even when the liver is damaged, these nutrients still come to the liver after they have been digested. But, once they arrive, the liver cannot process them and they build up. This build-up causes more liver damage.
A healthy diet for a person with liver disease would include:
a limited amount of protein. A damaged liver cannot process protein very well. This causes a build-up of ammonia in the bloodstream, which can become toxic.
more carbohydrate. Carbohydrate is the body's energy supply. A healthy liver makes glycogen from carbohydrate. The glycogen is then broken down when the body needs energy. A damaged liver cannot do this. Without glycogen, a consistent supply of carbohydrate is needed from the diet to make sure the body has enough energy.
a moderate amount of fat. Fat provides calories, essential fatty acids, and fat-soluble vitamins.
a limited amount of fluids and sodium. Liver damage can cause high blood pressure in the major vein of the liver. This can result in ascites, a fluid build-up in the abdominal cavity. Limiting fluids and sodium can help prevent this.
extra amounts of certain vitamins and minerals. A damaged liver has problems storing many vitamins and minerals.
People with liver disease should also seek the guidance from a physician and registered dietitian, for individualized medical nutrition therapy.
Author: Lanette Meyer, CD
Date Written: 01/11/00
Medical Review: James Hubbard, MD
Date Written: 10/13/2006
Reviewer: Reginald Finger, MDDate Reviewed: 2/2/2007
Contributors
Potential conflict of interest information for reviewers available on request
University of Illinois Medical Center at Chicago © 2006
Chapter 2
How I Got Hepatitis C
1981
I know exactly how and when I got Hepatitis C. I had been going to an aerobics class, recently started in Fresno, and had been keeping up with the 18-year-old leader to the beat of rock 'n roll. Went there right after my teaching day in a neighboring town. Had been doing so for over six months when I noticed that my legs seemed heavy when I lifted them--unusually heavy. That wasn't normal, so I scheduled a visit to my doctor. After his examination, he called Dr. C, a cardiologist at a local hospital, who wanted me to come right over for further tests. After his examination, the specialist advised me not go home before having an angiogram the next morning. This was inconvenient, since I felt fine and was teaching school, but he was so insistent, I reluctantly agreed and asked my husband to call the school to arrange for a substitute.
Dr. C showed me the subsequent x-ray, pointing out the mere thread that was my left artery descending and the narrowness of my right artery. He advised me to have a new procedure called an angioplasty before leaving the hospital, for I could easily have a heart attack, which under the circumstances could be fatal. After consulting with my husband, I agreed to do it.
Dr. C showed me the subsequent x-ray, pointing out the mere thread that was my left artery descending and the narrowness of my right artery. He advised me to have a new procedure called an angioplasty before leaving the hospital, for I could easily have a heart attack, which under the circumstances could be fatal. After consulting with my husband, I agreed to do it.
I've heard that angioplasties now are comparatively simple, but that wasn't so in 1981. It took an hour to get me prepared, with tubes and wires all over my body. A crowd of doctors gathered to observe, since I was only the 13th patient at the hospital to have the procedure. (My heart later was featured on the front page of the Fresno Bee.) I was mildly sedated but conscious, in order to cough on command in case my heart began to lag. Just when the team of three doctors and their assistants was about to begin, an emergency call came in regarding a patient having a heart attack. They put me on hold and left. An hour later the doctors and most of the observers returned.
Well into the procedure, Dr. C suddenly stepped back, and everything came to a halt. The doctors huddled in conversation and I could tell something was wrong, but in my woozy state wasn't the least bit worried. Dr. C finally bent over me to say that he had scraped the inner lining of the artery at a curve, and I had a choice: to wait an hour to see if it would heal or have open heart surgery immediately. A team of that specialty had been waiting as a precaution. Recalling my mother's experience with heart surgery and hearing about others, I chose to wait. By then my back was killing me because I had been lying there for so long, and I was close to panic because my legs were strapped down. A nurse agreed to release them if I promised not to move. Meanwhile, no one had thought to tell my husband what was going on, and he was imagining the worst.
The doctors returned and proceeded with the angioplasty. After they stitched up the incision in my groin, where the tube to my heart had been inserted, everybody left except a nurse at the sink. My legs had been untied again but I was reminded to lie still. Just as I was drifting off, I felt warmth flooding over the operating area. I looked down and saw a stream of blood gushing up. I managed a weak "Nuuurrse," loud enough for her to hear over the pans banging and water running. She dashed over to try and staunch the flow but was unsuccessful, so she ran to summon help. Dr. C came rushing in but didn't have any better luck, so he shouted for a ladder. Standing on a step for better leverage, he applied pressure on the incision for thirty minutes, to make sure the gusher was stopped, before he and another doctor closed the artery again. They apologized for the two pints of barely-thawed blood they decided I needed right away, which chilled me to the point my teeth chattered, and I was trundled off to Recovery. Five hours had elapsed from when I came into the surgery to the time I left.
Several nurses stayed with me all night, to keep me from moving from my spread-eagle position. I longed to tent my legs, to relieve my aching spine, but If I moved a leg, someone put it back. The nurses chatted, keeping me awake, occasionally asking a question--whether to make sure I was alive, or not, I didn't know.
At my next physical checkup, I was told I had something new called non-A, non-B hepatitis, but I needn't worry about it; however, I should go to the Red Cross station and get checked for AIDS, a new disease that had been appearing in San Francisco and was carried in blood. The doctor thought I probably needn't worry about AIDS, either, since Fresno used local blood--and he was right. It wasn't until I moved to the Coast in 1994 that the medical establishment decided to call the new disease, hepatitis C--which seems only logical. It's a virus that destroys the liver over time, and many people aren't even aware they have it. It gained attention when doctors and nurses began showing up infected through handling blood. Previously, it mainly appeared in drug addicts and homosexuals. The only developed treatment is a drug called interferon and a later companion drug, ribavirin, to be taken for at least six months, cures two out of three people and gives the person flu-like symptoms the whole time. It also has many serious side effects.
