We’ve
all seen the public service announcements, ads and commercials by now?
Hepatitis. You’d probably heard Naomi Judd share her amazing survival
story after being infected with hepatitis. As with other warnings we
usually don't take it very personal. After all you didn't engage in any
activity that would have caused hepatitis. We believe it could never
happen to us. Helen was one such woman.
Helen's first 35+ years of her life had been lived for the most part inside the box. Meaning she never used intravenous drugs. She was been married to her high school sweetheart. At the time of her diagnosis she had never known a person with hepatitis or heard anything about the disease. Yet, she was now having to find the strength to accept that fact that she had been diagnosed with chronic active hepatitis C? Hepatitis C can be a silent disease. No symptoms sometimes until irreversible damage had been done to your liver.
Helen hadn’t felt well in over a month. It seemed whatever she ate didn’t settle well. A small sip of soda made her feel bloated and full. She noticed how slow she was walking in the mall. She didn’t feel much like talking either. Basically anything on an ordinary level made her tired, real tired. Then one night she felt unusually bloated, tired and sick. She went to bed, only to wake in the middle of the night with a stomach so swollen it looked as if she was four months pregnant. Rushing to the emergency room she stopped quickly in the bathroom to throw up. When she looked in the mirror she noticed the white of her eyes were completely yellow. She knew she was very sick, but the thought of hepatitis never entered her mind. At first she was treated as if she had measles in the hospital. She had to wear a mask so she couldn't spread the virus. Blood tests were taken and she waited. Waiting wasn't that hard because moving was to draining.
Hours later a nurse with lack of empathy told her she tested positive for Hepatitis. She was told me, “Go home, and don’t be around food preparation and rest.” That was it. Go home. Okay but what about work? Helen thought she doesn’t work around food, she will be able to work. Rest an interesting concept. What about her three daughters, husband and full time job? It was almost 6:00 AM when she got home and helped into bed. She thought this won’t be as bad as the doctors told her. She’ll rest for a few hours and slowly be about her business. Instead what happened she never thought imaginable, a journey lasting more than four years? As she laid there that morning the only person she ever knew with hepatitis was her own father. He had contacted it after a blood transfusion during one of his two open heart surgeries. They didn't start testing blood until July 1992, all blood and organ donations in the U.S. are now tested for the hepatitis C virus. The CDC says the number of infections dropped by 90%, partially as a result of those screening tests. Her dad died in 1984.
Helen literally lay in bed unable to think for the first month. All she could do was attempt sleep, change positions and try again to sleep. It wasn’t the kind of sleep that is enjoyable like that beautiful afternoon nap, or that first night good sleep after a cold. It was the kind of sleep that no matter what time of day or night it was you were aware of how nauseous, full, irritable, itchy, bloated and depressed you were. 3:00 AM was as bad as 6:00 PM. No relief within 24 hours, day after day.
Literally 4 months passed until she felt somewhat like herself again. Her strength increased a bit and had an attitude was more positive. That sickness wasn’t going to keep her down any longer. Though there were signs that she wasn’t well. She shares how when she breathed in it smelt odd. Only to herself, like she could smell that she was sick deep inside. Also if she talked too much, or even thought too much it would end her day. Helen hadn't given up trying to get back to her old self. Information on her diagnosis was sparse, it was before the Internet.
Back to work, back to life, and around the 2 month mark from her feeling well again she started that awful upper stomach sickness feeling. She shares that she remembers being at the grocery store and having an overwhelming feeling that she had hepatitis again. Nothing else compares to the liver being sick. Helen had learned that the liver is the largest organ in the body, so being sick in your chest, upper stomach and back made sense. But how could she possible be sick again. Doctors told Helen she had hepatitis A. Hepatitis A is a virus that is spread through fecal contamination, when people don’t wash their hands after using the bathroom, if we must get any more graphic. It is also spread through contaminated food. Once you have hepatitis A, your body becomes immune to the virus. How could Helen be feeling as if she had hepatitis again?
Hepatitis B is transmitted through sexual relations or blood. Hep B is a very common disease among intravenous drug users. Helen did not have Hepatitis B. She had never been a drug user or been around any source of contaminated blood. Yet the only explanation from her doctor was that hepatitis is inflammation of the liver. She had an inflamed liver, again. She began her own research and read all about Non A and Non B Hepatitis. She thought this must be what she had. It was the worst kind of hepatitis the information read. Basically it turns into chronic life threatening liver disease. Helen called everywhere to get more information. Again months passes and Helen began to feel better again. It wasn’t a great accomplishment any more, she was thin, frail, easily depressed and quite tired. It seems as if she was never without a cold, bronchitis or stomach problems.
Three full years passed after Helen’s first emergency room visit. She was approaching her 37th birthday. She clearly remembers the day of her birthday that using the staircase seemed too much to deal with. She couldn’t make plans, her mind was getting fogging and her appearance was drawn and even the slightest family need overwhelmed her. Her doctor ordered another blood test. A new blood test proved that her liver was so abnormal and though her doctor was an internist and he told her he no longer knew how to treat her. She did not test positive for Hep A or Hep B, so in his determination it had to be Lupus or some rare disorder. Her liver enzymes were way too high. Normal is 6-60, here’s were in the hundreds and going up.
He recommended her to the Head of the Liver Research Department at the University of Irvine, in California. She was encouraged by this doctor's positive attitude. He told her she would get better. He ordered new blood tests, a liver scan, then a liver biopsy. In the 90's when someone turned yellow, stayed in bed for weeks, but didn't test positive for Hepatitis A or B, you were told you had Non A or Non B Hepatitis. And with that no big hope of recovery. All tests proved positive for Hepatitis Non A and Non B. She had been misdiagnosed the last three years. She had Chronic Active Hepatitis C. With that diagnosis there wasn’t a lot of hope for Helen’s future. Hepatitis C left undetected or untreated can become a virus, which can eventually kill you.
At the time of this diagnosis Helen had serious depression, pleurisy, and a collapsed stomach, added liver disease didn't help much. The disease was horrific, and so was the treatment proposed to me. In 1993-94 she received the offer to be a human guinea pig for UCI Liver Research Department? That’s it! Told that there was only a slim chance of recovery, Helen had been selected to be one of 370 patients in the United States to try an experimental drug therapy program for liver disease: Interferon alfa-2A. Her odds for recovery: a 50% chance of survival after 10 years with treatment, and less without. The information the doctors gave her detailing the side effects of the experimental dosages were even more frightening than the disease itself. After much thought, and with no other good options, Helen agreed to the treatment.
The course of treatment was self-injected shots every other day. No more than a 25% chance of recovery, with so many side effects she couldn’t imagine adding that to her already unhealthy, depressed state. For the next six months Helen's sickness mixed with the experimental dosages of interferon alph-2A basically left her comatose. Her three beautiful daughters and husband would see nothing more than a limp, lifeless, yellow body—except, of course, for my bouts of anger, depression, and nausea. Horrific headaches, body aches, mind dulling existence was daily. Not only was she sick from hepatitis, run down from years of being misdiagnosed, but now she was injecting 600 milligrams of this medicine, three times a week, into her small thin body hoping to kill this deadly virus. Without much hope, with much faith, Helen continued to give herself injections; weekly getting blood tests to log her progress, if any, this treatment was having on her body. She felt horrible about being no help to her children, husband and lost the desire to care what was happening at work.
The thought of going through months of this treatment was overwhelming. And no promise that it would even work or that she wouldn’t get worse from the treatment itself. Then things took a turn for the worse. Three months into her treatment the interferon started affecting her central nervous system. She would toss and turn without feeling anxious and dreadful. Closing her eyes brought on the worst sort of images and she began to feel guilt over every single thing she had done wrong her entire life. Everything was blown out of portion and playing in her mind like a movie screen whenever she closed her eyes. Resting became impossible. She also didn’t feel right about sharing this with anyone because it was distorted and not reality.
Helen made an extra appointment with her doctor to announce she was going off the program. She no longer could deal with the side effects of Interferon alfa-2a. The thought of giving herself one more injection was simply petrifying. Her doctor explained to her that the disease should be compared to an ant farm. The queen ant was resting comfortably insider her mound. The working ants were running all around protecting the queen ant. Up to this point in her treatment she had been successful in killing some of the working ants. Stopping the treatment before the proposed six months would guarantee that the progress made would be reversed. Helen would return to the exact state that she had been in when therapy began. This analogy made sense. Helen agreed to continue.
That was November 1995. March of 1996 Helen injected herself for the last time. Now would we all know if she was in remission or the disease would return when the drug therapy treatment stopped? Every month Helen would go in for a blood test. Each time she would hear that her liver enzymes were below 60. In fact, they were ranging from 6-11, as normal as you can possible get. She was feeling healthy, better than she could remember. The tests were showing negative for hepatitis being present in her liver. There was no yellow discoloration to her skin or to her eyes. And that in itself was hard to believe; because she had been yellow so long it looked like her normal color. It had looked before that her skin had been strained.
That journey with Hepatitis began in 1992. Because of a caring doctor, with a great attitude of positivity, a liver research department willing to accept her into the experimental program, Helen is still well today. Helen’s case is published in the records of the University of Irvine to help research others that are in the same circumstance. And best of all, her agreeing to be on the experimental program made it possible to pave the way for Interferon alpha-2a standard treatment for Hepatitis C.
As of today’s date, January 19, 2016 Helen is still living healthy, with a perfectly normal liver. She no long has blood tests to confirm this. She graduated out of that program with a bill of good health when she was 37 years of age. Today at age 59, Helen is thankful for all she went through. Hepatitis C is an epidemic for baby boomers. The reason that baby boomers have high rates of Hepatitis C is not completely understood. Most boomers are believed to have become infected in the 1970s and 1980s when rates of Hepatitis C were the highest. Since people with Hepatitis C can live for decades without symptoms, many baby boomers are unknowingly living with an infection they got many years ago. Hepatitis C is primarily spread through contact with blood from an infected person. Many baby boomers could have gotten infected from contaminated blood and blood products before widespread screening of the blood supply in 1992 and universal precautions were adopted. Others may have become infected from injecting drugs, even if only once in the past.
Still, many baby boomers do not know how or when they were infected. While anyone can get Hepatitis C, more than 75% of adults infected are baby boomers, people born from 1945 through 1965. Most people with Hepatitis C don’t know they are infected. Baby boomers are five times more likely to have Hepatitis C. Liver disease, liver cancer, and deaths from Hepatitis C are on the rise. The longer people live with Hepatitis C, the more likely they are to develop serious, life-threatening liver disease. Getting tested can help people learn if they are infected and get them into lifesaving care and treatment. For many people, treatments are available that can cure Hepatitis C and prevent liver damage, cirrhosis, and even liver cancer. Talk to a health professional, call the health department,
Helen's first 35+ years of her life had been lived for the most part inside the box. Meaning she never used intravenous drugs. She was been married to her high school sweetheart. At the time of her diagnosis she had never known a person with hepatitis or heard anything about the disease. Yet, she was now having to find the strength to accept that fact that she had been diagnosed with chronic active hepatitis C? Hepatitis C can be a silent disease. No symptoms sometimes until irreversible damage had been done to your liver.
Helen hadn’t felt well in over a month. It seemed whatever she ate didn’t settle well. A small sip of soda made her feel bloated and full. She noticed how slow she was walking in the mall. She didn’t feel much like talking either. Basically anything on an ordinary level made her tired, real tired. Then one night she felt unusually bloated, tired and sick. She went to bed, only to wake in the middle of the night with a stomach so swollen it looked as if she was four months pregnant. Rushing to the emergency room she stopped quickly in the bathroom to throw up. When she looked in the mirror she noticed the white of her eyes were completely yellow. She knew she was very sick, but the thought of hepatitis never entered her mind. At first she was treated as if she had measles in the hospital. She had to wear a mask so she couldn't spread the virus. Blood tests were taken and she waited. Waiting wasn't that hard because moving was to draining.
Hours later a nurse with lack of empathy told her she tested positive for Hepatitis. She was told me, “Go home, and don’t be around food preparation and rest.” That was it. Go home. Okay but what about work? Helen thought she doesn’t work around food, she will be able to work. Rest an interesting concept. What about her three daughters, husband and full time job? It was almost 6:00 AM when she got home and helped into bed. She thought this won’t be as bad as the doctors told her. She’ll rest for a few hours and slowly be about her business. Instead what happened she never thought imaginable, a journey lasting more than four years? As she laid there that morning the only person she ever knew with hepatitis was her own father. He had contacted it after a blood transfusion during one of his two open heart surgeries. They didn't start testing blood until July 1992, all blood and organ donations in the U.S. are now tested for the hepatitis C virus. The CDC says the number of infections dropped by 90%, partially as a result of those screening tests. Her dad died in 1984.
Helen literally lay in bed unable to think for the first month. All she could do was attempt sleep, change positions and try again to sleep. It wasn’t the kind of sleep that is enjoyable like that beautiful afternoon nap, or that first night good sleep after a cold. It was the kind of sleep that no matter what time of day or night it was you were aware of how nauseous, full, irritable, itchy, bloated and depressed you were. 3:00 AM was as bad as 6:00 PM. No relief within 24 hours, day after day.
Literally 4 months passed until she felt somewhat like herself again. Her strength increased a bit and had an attitude was more positive. That sickness wasn’t going to keep her down any longer. Though there were signs that she wasn’t well. She shares how when she breathed in it smelt odd. Only to herself, like she could smell that she was sick deep inside. Also if she talked too much, or even thought too much it would end her day. Helen hadn't given up trying to get back to her old self. Information on her diagnosis was sparse, it was before the Internet.
Back to work, back to life, and around the 2 month mark from her feeling well again she started that awful upper stomach sickness feeling. She shares that she remembers being at the grocery store and having an overwhelming feeling that she had hepatitis again. Nothing else compares to the liver being sick. Helen had learned that the liver is the largest organ in the body, so being sick in your chest, upper stomach and back made sense. But how could she possible be sick again. Doctors told Helen she had hepatitis A. Hepatitis A is a virus that is spread through fecal contamination, when people don’t wash their hands after using the bathroom, if we must get any more graphic. It is also spread through contaminated food. Once you have hepatitis A, your body becomes immune to the virus. How could Helen be feeling as if she had hepatitis again?
Hepatitis B is transmitted through sexual relations or blood. Hep B is a very common disease among intravenous drug users. Helen did not have Hepatitis B. She had never been a drug user or been around any source of contaminated blood. Yet the only explanation from her doctor was that hepatitis is inflammation of the liver. She had an inflamed liver, again. She began her own research and read all about Non A and Non B Hepatitis. She thought this must be what she had. It was the worst kind of hepatitis the information read. Basically it turns into chronic life threatening liver disease. Helen called everywhere to get more information. Again months passes and Helen began to feel better again. It wasn’t a great accomplishment any more, she was thin, frail, easily depressed and quite tired. It seems as if she was never without a cold, bronchitis or stomach problems.
Three full years passed after Helen’s first emergency room visit. She was approaching her 37th birthday. She clearly remembers the day of her birthday that using the staircase seemed too much to deal with. She couldn’t make plans, her mind was getting fogging and her appearance was drawn and even the slightest family need overwhelmed her. Her doctor ordered another blood test. A new blood test proved that her liver was so abnormal and though her doctor was an internist and he told her he no longer knew how to treat her. She did not test positive for Hep A or Hep B, so in his determination it had to be Lupus or some rare disorder. Her liver enzymes were way too high. Normal is 6-60, here’s were in the hundreds and going up.
He recommended her to the Head of the Liver Research Department at the University of Irvine, in California. She was encouraged by this doctor's positive attitude. He told her she would get better. He ordered new blood tests, a liver scan, then a liver biopsy. In the 90's when someone turned yellow, stayed in bed for weeks, but didn't test positive for Hepatitis A or B, you were told you had Non A or Non B Hepatitis. And with that no big hope of recovery. All tests proved positive for Hepatitis Non A and Non B. She had been misdiagnosed the last three years. She had Chronic Active Hepatitis C. With that diagnosis there wasn’t a lot of hope for Helen’s future. Hepatitis C left undetected or untreated can become a virus, which can eventually kill you.
At the time of this diagnosis Helen had serious depression, pleurisy, and a collapsed stomach, added liver disease didn't help much. The disease was horrific, and so was the treatment proposed to me. In 1993-94 she received the offer to be a human guinea pig for UCI Liver Research Department? That’s it! Told that there was only a slim chance of recovery, Helen had been selected to be one of 370 patients in the United States to try an experimental drug therapy program for liver disease: Interferon alfa-2A. Her odds for recovery: a 50% chance of survival after 10 years with treatment, and less without. The information the doctors gave her detailing the side effects of the experimental dosages were even more frightening than the disease itself. After much thought, and with no other good options, Helen agreed to the treatment.
The course of treatment was self-injected shots every other day. No more than a 25% chance of recovery, with so many side effects she couldn’t imagine adding that to her already unhealthy, depressed state. For the next six months Helen's sickness mixed with the experimental dosages of interferon alph-2A basically left her comatose. Her three beautiful daughters and husband would see nothing more than a limp, lifeless, yellow body—except, of course, for my bouts of anger, depression, and nausea. Horrific headaches, body aches, mind dulling existence was daily. Not only was she sick from hepatitis, run down from years of being misdiagnosed, but now she was injecting 600 milligrams of this medicine, three times a week, into her small thin body hoping to kill this deadly virus. Without much hope, with much faith, Helen continued to give herself injections; weekly getting blood tests to log her progress, if any, this treatment was having on her body. She felt horrible about being no help to her children, husband and lost the desire to care what was happening at work.
The thought of going through months of this treatment was overwhelming. And no promise that it would even work or that she wouldn’t get worse from the treatment itself. Then things took a turn for the worse. Three months into her treatment the interferon started affecting her central nervous system. She would toss and turn without feeling anxious and dreadful. Closing her eyes brought on the worst sort of images and she began to feel guilt over every single thing she had done wrong her entire life. Everything was blown out of portion and playing in her mind like a movie screen whenever she closed her eyes. Resting became impossible. She also didn’t feel right about sharing this with anyone because it was distorted and not reality.
Helen made an extra appointment with her doctor to announce she was going off the program. She no longer could deal with the side effects of Interferon alfa-2a. The thought of giving herself one more injection was simply petrifying. Her doctor explained to her that the disease should be compared to an ant farm. The queen ant was resting comfortably insider her mound. The working ants were running all around protecting the queen ant. Up to this point in her treatment she had been successful in killing some of the working ants. Stopping the treatment before the proposed six months would guarantee that the progress made would be reversed. Helen would return to the exact state that she had been in when therapy began. This analogy made sense. Helen agreed to continue.
That was November 1995. March of 1996 Helen injected herself for the last time. Now would we all know if she was in remission or the disease would return when the drug therapy treatment stopped? Every month Helen would go in for a blood test. Each time she would hear that her liver enzymes were below 60. In fact, they were ranging from 6-11, as normal as you can possible get. She was feeling healthy, better than she could remember. The tests were showing negative for hepatitis being present in her liver. There was no yellow discoloration to her skin or to her eyes. And that in itself was hard to believe; because she had been yellow so long it looked like her normal color. It had looked before that her skin had been strained.
That journey with Hepatitis began in 1992. Because of a caring doctor, with a great attitude of positivity, a liver research department willing to accept her into the experimental program, Helen is still well today. Helen’s case is published in the records of the University of Irvine to help research others that are in the same circumstance. And best of all, her agreeing to be on the experimental program made it possible to pave the way for Interferon alpha-2a standard treatment for Hepatitis C.
As of today’s date, January 19, 2016 Helen is still living healthy, with a perfectly normal liver. She no long has blood tests to confirm this. She graduated out of that program with a bill of good health when she was 37 years of age. Today at age 59, Helen is thankful for all she went through. Hepatitis C is an epidemic for baby boomers. The reason that baby boomers have high rates of Hepatitis C is not completely understood. Most boomers are believed to have become infected in the 1970s and 1980s when rates of Hepatitis C were the highest. Since people with Hepatitis C can live for decades without symptoms, many baby boomers are unknowingly living with an infection they got many years ago. Hepatitis C is primarily spread through contact with blood from an infected person. Many baby boomers could have gotten infected from contaminated blood and blood products before widespread screening of the blood supply in 1992 and universal precautions were adopted. Others may have become infected from injecting drugs, even if only once in the past.
Still, many baby boomers do not know how or when they were infected. While anyone can get Hepatitis C, more than 75% of adults infected are baby boomers, people born from 1945 through 1965. Most people with Hepatitis C don’t know they are infected. Baby boomers are five times more likely to have Hepatitis C. Liver disease, liver cancer, and deaths from Hepatitis C are on the rise. The longer people live with Hepatitis C, the more likely they are to develop serious, life-threatening liver disease. Getting tested can help people learn if they are infected and get them into lifesaving care and treatment. For many people, treatments are available that can cure Hepatitis C and prevent liver damage, cirrhosis, and even liver cancer. Talk to a health professional, call the health department,
No comments:
Post a Comment