Before the storm, by Debra Clark 2010
When I was young I loved to study beautiful pictures (I still do). I thought a pretty picture was a pretty picture: beautiful, sometimes colorful, sometimes mesmerizing if the image was something that had a sci-fi or abstract theme. To me, photos of galaxies, planets, stars, the earth from a distance or even clouds, could hold my attention for hours. I didn’t even take note whether or not the image was artist created or not–it was simply a pretty picture that captured my attention and then my imagination. So, look at these two images whilst putting on your inner-child glasses:
These are really beautiful images, colorful and imaginative with a space-like/sci-fi quality to them. You can see all kinds of details and wonder: What are those little bursts jutting out of the circular images? One looks like it’s searching for something, while the other seems contained with lots of friends. I could look at these images and study them forever, creating stories for each aspect. I could also let my imagination roll, and come up with full-blown stories for each image. However, the images are not made up. They are real and they are the subject of this story.
The red and green image on the right is the HIV virus, while the one on the left is the Hepatitis C virus. They look beautiful, but what they do to our bodies is horrific. In their wake they leave scarred black tissue, and in some cases, complete and utter devastation with eventual death.
How can something so pretty do so much harm?
Reality sinks in. There are many pretty things that have the potential to do extensive harm. Think of all the venomous bugs and reptiles! They are the most colorful, and the most deadly! (Personally, I am enthralled with this paradox…it gives credence to my love of mysteries, story-telling and art).
There is a certain amount of irony to most things in life. For example, when health communicators set out to do something, with the best of intentions, regarding the emerging AIDS epidemic in the late 1980s, they ended up creating an utter social disaster. Over the course of about three months, their communication efforts created a public backlash that instead of helping victims, ended up ostracizing and isolating them. Think Ryan White; if you do not know who he was Google him. Infected adults were immediate targets of hatred due to the fear created via poor communication. Children were kicked out of schools and others run out of communities. Some hospitals, doctors and other health professionals refused to care for patients dying of AIDS, in some cases they would not even touch them, and therefore created separate, isolated wards for AIDS patients to die in. If a person was diagnosed HIV positive, they were given an immediate death sentence and treated as if they were publicly infectious and already dying.
This was a horrific time all due to a public service announcement that announced the virus and disease, but gave no tool or even a toll-free number for which scared citizens could call and get proper information. Imaginations ran wild with fear as agencies tried to right a very simple but devastating wrong.
Hollywood did try to educate through entertainment (infotainment) with movies like Tom Hank’s award-winning The Philadelphia Story. Then there was The Band Played On, and then numerous others, including Ryan White’s story to movie. Elizabeth Taylor and Michael Jackson rallied to the call to help too, by raising money to help sick people who had been essentially cut-off from family and friends. Regardless of the rally to get the correct information out, it took more than a decade for the general public to realize they would not catch the HIV virus by being in the same room with an infected person.
Now, almost thirty years after HIV, we are now dealing with what is called the “Baby Boomer Epidemic” or the “Silent Killer.” Remember, if you are a baby boomer, then you witnessed what happened at the beginning of the HIV/AIDS epidemic and should know better to seek out information before jumping to fearful conclusions. Hopefully, thanks to our common experience of HIV we have all learned not to jump to fear-fuelled conclusions. Like my first death diagnosis.
I have chronic active Hepatitis C.
I am not alone!
A study published in 2003 by the Journal of the American Medical Association stated that approximately 2.7 million U.S. individuals are chronically infected with Hep C. This means not every single person who is diagnosed with Hepatitis C will keep the disease for the rest of their life. For some, it just goes away forever. For others, the disease stays in the body, but does nothing, while for some the virus keeps growing and eventually goes to war with the liver, eventually causing death. Then there are others who try the latest treatment, and are cured. (I failed three attempts. Or as my friends like to say, the drugs failed me.) It is an epidemic in the USA. It is growing faster than the HIV/AIDS epidemic, and the death rates have exceeded HIV/AIDS related deaths.
I’m just one of those unique individuals, 10 to 20 percent, whose body has decided it likes Hepatitis C and fights every agent that comes my way to rid my body of it! I’ve had a lot of fun, and a full and interesting life. I’ve decided to share the so-called silent years, (potential treatments and personal experience), so there’s more information available for my family, friends, interested patients or healthcare providers, (with more detailed information in future blog posts). I know I am genetically predisposed to what I am going through, being a 1A genotype. I’m dealing with Hep C side-effects for the first time in 30 years….remember, it is called the “Silent Killer” for a good reason!
Honestly, the only time this disease has ever affected my life has been, when I had my two children, (I was scared to death, until their tests came back clean), when I tried to get rid of it, or when I encountered a diagnosis related to it…usually with a dire prognosis. What do you mean Liver Cancer?
So, I have a hard time thinking about having Hep C (Hepatitis C).
I can live with it. I can deal with it. I understand the consequences.
However, I had a hard time with: ”What if’s?” “When?” “What’s next?” That is, until recently. Now I have to deal with Hep C. Absolutely no choice….Now, after thirty years, I have cirrhosis, portal hypertension, pain, fatigue, nausea, did I mention pain? Oh yeah, sometimes I forget things!
The real oxymoron is that the side effects of the disease are very similar to the side effects I experienced when I tried to get rid of this virus, just so I wouldn’t have to deal with “what if’s?” What a trip! And, no, I am not a candidate for the newest treatment that involves interferon or ribovarin. I will die from Hep C, (unless I’m in a fatal accident). Figuring out the “when” is now a bit unavoidable. Rough estimates on my life expectancy are at one-five years. However, there are a lot of things I can do to help myself (and others).
In order to make sense of my story, it is important to remember that anywhere from 4 to 6 million “baby boomers” in the US have this disease and do not even know they have it! Often symptoms are unrecognizable until it is too late.
If one were to Google hepatitis C, you would find hundreds of thousands of links. Some are medical professionals, some are drug advertisements, and some are personal chats from patients and their families to medical information websites.
While information is power, misinformation is the most powerful factor that often destroys our lives and friendships. My quest is to throw light on the subject because often the light of knowledge is the best antidote out of dark misinformation.
What to do? What to do? Simply get tested. Know that a positive test does not equate death!
The predominant population of adults that have the disease got it though IV drug abuse, or via a blood transfusions. A very small subset of patients, typically .04 percent (which is a very very small number of people), get Hep C from sex with an infected person. As I mentioned earlier, I have two children that did not contract the Hep C virus while I was pregnant. At this point, I know of no cases of children contracting Hep C from their mothers, only through blood transfusions.
When living with a partner or family member with Hepatitis C, avoiding blood is the only necessary rule. Don’t share razors, don’t share toothbrushes, and don’t share needles/syringes. To me, these precautions are no-brainers. However, they do need to be stated because, just like HIV, misinformation could wreck havoc with one’s social life! You cannot catch this virus by being in the same room as an infected person. You cannot catch it from sneezes or spit or kissing. You really have to do something fairly stupid to catch this disease. You just have to be smart and thoughtful, when living with or helping either a Hep C or HIV infected person. No brainer, right? So where are we with current public health communication campaigns? I’ve really only seen two. One addresses Baby-Boomers and the “Silent Killer,” and another is indirectly via media when a new cure becomes available, borrowed from the HIV cocktail. New ones are on the horizon.
On The Horizon; photograph by Deb Clark, 2013
I knew something was wrong with me the summer of 1982. I was living in London, working and going out like any other 21-year-old with loads of money and a group of hi-profile celeb friends. (A whole different story for another time!) I had been to see three different doctors. Each took a different approach, one wanted me to get B-12 shots, one wanted me to take prescribed speed, and the other, after a very inappropriate exam of my breasts, told me I was perfectly fine! Not knowing what to do, I kept my working and social calendar intact. Essentially, I chose to ignore my symptoms. At some point during this ordeal, my live-in boyfriend told me he had a non-specific hepatitis and all he had to do was slow down when he didn’t feel quite right–that was in the past, as he drank like a fish the whole time we were together. Just as I was making plans to permanently settle in the UK, and celebrate my engagement, my job ended, and I was recalled back to Houston.
No warning what so ever.
Needless to say, I was really upset and very depressed. I lost the boyfriend I thought I was going to marry. I lost living in a posh flat in an equally posh city. I lost my high-living lifestyle. I lost myself. My way of living for the past three years simply ended. I thought my life had ended too. Maybe it was my age, maybe because I was spoiled. Whatever, I withdrew and refused to do much of anything. However, when I did try to deal with all my life changes, my parents thought I was more sick than depressed. They had me see a doctor, who did numerous invasive tests, exams and blood work. The physicians determined I was run-down due to non-A, non-B hepatitis with a horrific case of mononucleosis. As the doctor explained, I had run myself down to the point that my immune system was in a dangerous condition, my liver was on the verge of failure, and that I needed bed rest for at least six weeks to try to regain my health, my immune system and my strength. I was put on a special diet, vitamin B shots, a regime of on-going blood tests, and back to bed I went.
I was sick, depressed, fatigued and completely miserable living back home with parents who were in the midst of their own crisis–divorce. As soon as I was able, I got out of the Houston home by taking another assignment in Mexico. I lasted about seven months, up to the point that I again got sick–this time with typhoid! After several weeks in a Mexican hospital in in the middle of nowhere, (I refused a medical helicopter ride to Nogales, Arizona), I recovered enough to get back to Texas and then onto Austin to go back to school and, at the same time, was determined to never work in an American corporate setting–that included the family business. I wanted my own life, on my own terms.
For about a year, I attended school in Austin, and then moved to Nashville to finish my bachelor’s degree, be around new friends, and spend some time with family there. In 1985, while attending Belmont University, I got pregnant with my first child. It was not until then, that I gave some thought to my previous life-threatening disease. I had been told, among many things, that I might not ever be healthy enough to have a baby. So, being pregnant, and worried about the baby and my health, I had blood work done to see if my liver, immune system and baby were okay. I was told everything was fine. I decided, since this might be my only chance to have a baby, I was going to go through with the pregnancy. While I was excited, the baby’s father was not. He said he would help financially, from a distance, but that he would not be a father to our baby. I was upset, but then I put all my energy into having a healthy baby, moving forward with school and deciding to make the best of life.
While attending Tennessee State University, on a minority scholarship as an interdisciplinary studies student (journalism/pre-med), I was able to land a great internship and eventual freelance writing position with Nashville Magazine!
I loved the thrill of exploring, investigating, researching and writing. However, I became completely un-glued whenever I turned in my final copy for the editing and eventual publication process. At times I feared I was not good enough. At other times I feared what I “meant” to say and what would be published would not be in sync. I also had a secret agenda…to not only write and get published, but to also impart some sort of information to educate and break previously held myths or barriers. I loved the idea of finding out something that not everyone would know and sharing it. For example, I interviewed a very famous art gallery owner and one of the very privileged dames of Nashville. Through my interview with her (which mainly focused on her spectacular home) I found out that anyone could own original art! Art galleries, at the time I wrote the story, did not charge interest fees, took minimal down payments, and arranged reasonable payment plans, so that any normal person could slowly acquire a piece of spectacular art! In other words, you didn’t have to be rich and famous to own a piece of the art world—like the rich and famous. Call me naive, however, I was learning too.
I had previously taken a lot for granted, and wanted to know more about how to manage an interesting life, attain the unattainable, and become educated in the process. I’m sure this stems from my truly neurotic need to give back? I really believed my parents when they said, “If you don’t finish your dinner, kids in Africa will starve!” I even felt guilty about becoming a vegetarian! Regardless, I did take a lot for granted when I was younger, and I did have a genuine need to want to give back—no matter the neurosis behind it all. It was during this time period, raising my daughter, married to my musician husband, going to school and doing freelance stories, that I happened across another gem of a story…one that would later change the direction of my life and put me at the front and center of dealing with a deadly disease.
Through a friend of a friend, I found out about organ donation. Personally, I was horrified and repulsed by the idea. I possessed every myth and bit of misinformation one could have regarding organ donation and transplantation. I decided, out of morbid curiosity, to pitch a “behind the scenes” feature for the magazine. The magazine was immediately interested because nobody had ever printed a behind the scenes story about death, donation and transplantation—it was a first, and great scoop!
It took me several months sorting through a stack of mandated research by Dr. Bill Frist, at the time the Tennessee Donations Services (TDS) medical director. After I read and digested the research, I would meet with Dr. Frist to essentially prove I had understood what I read. Then, after I passed muster with the medical literature and research, I was assigned a pager. I would cover several organ donation requests, surgical recoveries and transplant procedures, so that I could construct a comprehensive article where no one could identify the deceased or the recipient. Confidentiality was an absolute mandate for the story I was to write.
Each time the pager went off, my heart dropped. I knew that the shrieking beeping noise meant someone was dead or dying. I would have someone take my daughter, and I would rush off to the designated hospital per the call back. Each time, I stood as far as I could be from the dying person. I observed and made notes of everything. In the operating room, I even took photos of the organs that had been removed and would quickly be transplanted into another dying person, yet hoping for a new life.
The entire experience changed me. I realized my original opinions were misinformed and based upon dramatized myths from movies and science fiction stories. I literally went through a transformation, and decided to do what I could to help further educate the public after my story was published. While I was working with TDS I got into a conversation with one of the lab techs about a new form of hepatitis that was increasing the need for liver transplants. He described the disease as having been previously known as Non-A / Non-B hepatitis. Wait, I said, I was diagnosed with that disease nearly ten years ago. He suggested I go get blood work done, because the test had just been made available for the public. This was 1989.
I found a hepatologist (liver doctor) in Nashville who was working with Hep C patients, so I made an appointment to get tested. To my horror, I was positive. I had this newly identified deadly virus. Around this time, I also found out I was pregnant with my second child. The doctor decided we should put off my biopsy, (at the time a biopsy was the only way to find out if the virus was damaging my liver), until after the birth of my son. I also had to arrange to have both of my children tested to see if I had unknowingly passed the virus, and potential death sentence on to them. I was scared in so many directions. I think freaking out would be apropos in describing what I was going through. I was still writing, going to school, pregnant, and now I could potentially have a disease that could kill me, and worse, my children. After the birth of my son in September of 1990, I had both children tested for Hepatitis C. They were, thank God, both negative for any of the hepatitis viruses (by this time there were plenty to choose from). My biopsy was scheduled around January 1991. My son was four-months-old, my daughter soon to be five-years-old. I was still breast-feeding my son, (I had been told this was still a safe option), so I set up the biopsy with the intention that no pain medication be used. I didn’t want my son to be further affected by my disease. By now, I had managed to build up a lot of guilt over contracting the disease and now having to deal with the consequences.
The liver biopsy is, at the very least, an uncomfortable procedure. At it’s worst, there is severe pain, the possibility of bleeding to death or doing further damage to the liver. This was at the back of my mind as they prepped me. I was in a hospital room. I waited up to the last minute to feed my son and then the biopsy procedure began. The doctor injected a local anesthetic to numb the area, where a rather long and big needle would be inserted between my ribs, pushed through the cartilage and finally into my liver. Then the tool would extract a kind of a spaghetti noodle of liver tissue for further testing. It hurt like hell. Once the needle was in and then out, sharp pains began in my right shoulder and did not stop.
Through it all, I was watching my doctor’s face, the part I could see above his facemask. For some reason, he had begun to sweat profusely. He was an easy-going very nice doctor, so seeing his masked expression I got the distinct impression that something was wrong. He told me that unfortunately the biopsy needle did not remove the tissue and that he was going to have to re-do the biopsy. Fine, I said, just get it over with. This time, as I watched my doctor’s face and tried to not think about the incredible pain I was feeling, he seemed to turn white and looked like he was going to faint! I asked him, once the needle was out, if he got the liver tissue. No he said. The tool had malfunctioned and he wanted to take me to the operating room to do a laparoscopy to get the biopsy and make sure I was not bleeding too much. I had been warned previously that one could bleed to death from this type of biopsy. I agreed, not just because I was frightened, but at the same time, I wanted this ordeal to be over with, and to make sure if I was losing too much blood, they could just deal with it. (I still have the videotape of the third biopsy.) The doctor was able to get his sample and deal with the bleeding. I had to stay in the hospital longer to be watched and not move, so that the bleeding would slow down. After all of the multiple procedures and immense pain, I did decide in favor of pain medication, however, I still kept up my feeding schedule for my baby. To say that my first biopsy was traumatic would be a severe understatement. However, what happened next was worse.
Two weeks after the biopsy, still moving slow and in pain, my doctor gave me the results. I had some inflammation of my liver and a very active virus. I asked him what this meant and he gave me the good news first. Since the biopsy tool had malfunctioned, all my care related to my liver would be covered by the hospital, including further tests and appointments. I guess I didn’t realize I could have died that day. It really didn’t matter, because the bad news was that I had maybe ten years to live, before the virus would completely destroy my liver.
Life as I knew it was to change forever! I made a plan and was perfectly fine with my decisions. I planned for my death and for the care for my children.
I am not scared now! I hope to outlive the conclusion to this “odyssey” via my blog and educate as I have done most of my life.
For information about Hepatitis please Google or visit: www.cdc.gov/gov/hepatitis and WebMD News for “Baby Boomers Need Hepatitis C Test, CDC Study Confirms,” (HealathDay News, Aug 15, 2013)
© Debra Clark, 2014
All Images taken by Debra Clark
HIV and Hepatitis Virus photos from public service databases
Adapted from a blog written by Debra Clark at: http://www.clarkodysseywithhepc.blogspot.in/
Note from the Editor:
While in the process of going to press, Debra Clark began a new experimental drug cocktail, Olysio and Sofaldi. Since so many people are dying from hepatitis c right now, 130,000 a year globally, doctors are working with patients to save lives, but at $160,000 for a three month treatment with a very high success rate, many are dying trying to get the medication. Ms. Clark was fortunate to have a medical team that has been working with pharmaceutical companies and personal insurance programs to get affordable prescriptions. For more information: http://www.nytimes.com/2013/12/07/business/fda-approves-pill-to-treat-hepatitis-c.html?_r=0