My journey into the silent disease into destruction
30 plus years ago I picked up a bag and I turned into a dragon. I don’t even know how I did this. Statistics show it is quite easy. 5 million people in the US picked up this bag. 3 million people are unaware they became a dragon.
Baby boomer? Born between—1945 and 1965–By the mid 1990’s did you have a blood transfusion? Go to the dentist? Have you gotten a tattoo? Ears pierced? Pedicures? Incarcerated? An inoculation while in the military when air jet guns shared needles. How about shared a razor or someone else’s toothbrush? Shared a straw with someone to do some cocaine or a needle. Health care worker? Many more ways? If you said yes one question you could be number 12. One of every twelve have picked up the bag. I am number 12.
The dragon, because this disease sleeps for many years and one day, it wakes up and ends your life, happening 20-30 years ago you may just now be finding out. It is very old and very smart…..it doesn’t kill quickly. It has chosen to infect the liver. The ONLY organ capable of regeneration. It simmers for many years, keeping its host alive. It is so smart it uses our own immune system against us. “dragons are known for their ferocity and have a reputation for being ruthless…Also, it’s a symbol of something that is living, breathing fire and can only be killed with determination and bravery at great risk to yourself.”
A serious health problem that requires treatment to prevent long-term health complications, including irreversible damage to the liver, liver cancer, liver failure, and death. In fact, this is serious enough that it is the leading reason for liver transplantation in the US.
Considered an epidemic and is now killing more people than AIDS/HIV… 30,000 a year and it’s going to get much worse. The number of adults seeking liver transplants will skyrocket in the next 20 years. An estimated 10,000 to 30,000 Americans die from this disease each year. Deaths are estimated to increase because of the increasing risk of infection, and the resulting cirrhosis, portal hypertension, thrombocytopenia, bleeding from varices, and liver cancer. Five years ago, 20% of people were candidates for liver transplantation and today the number has increased to about 50%. Considering that we don’t have enough organs now and people die on transplant lists. For those fortunate enough to find a donor, the process costs roughly $300,000 during the first 3 months, and can be painful and incapacitating. Add to this the thousands of dollars for anti-rejection drugs and the costs of aftercare more frequent visits to health care facilities. The other option, debilitating and ineffective chemo, runs into the tens of thousands of dollars and more and has success rates in the mere single digits.
It isn’t so much that Doctors and Dentists were using unsafe methods. It is that this disease was not recognized as such. It was not even named until 1989. So, who is at fault? Neither are hospitals, transfusion centers, etc. You can’t prevent something you don’t know exists. Once known, measures were taken to screen all blood products. The blood supply has been monitored since 1992.
It really doesn’t matter how anyone was infected at this point. What matters is that they have become ill with a virus and that we need to be treated for it.
Do you know what baggage I picked up and how I became a dragon?
I’m a baby boomer born in 1959 to a middle class family. The oldest of three. It was and still is a close family. In my teens I had extensive dental work. Many teeth extracted, braces the works. My senior year of high school I finally was a loud to get my ears pierced. This was because my mother the nurse said it’s so unhealthy to have this done. Not like now days with a gun and earrings put right in. This was a steel needle put through my ears then the earrings put in. The needle was wiped off with alcohol and placed in a box for the next candidate. Right out of high school I got married and started my family. While raising my children I did drink socially, snorted some drugs didn’t eat healthy. Lived on sugar, carbs and pop. We were the average American family. Both my husband and I worked living from pay check to pay check.
April 1983 I rushed to the hospital hemorrhaging. I needed a blood transfusion. After spending 2 days in the hospital; home I went and back to my everyday routine.
1985 comes around my husband has a traumatic injury to his liver. Three quarters of his liver is removed and was given a blood transfusion. This is when my knowledge about the liver able to regenerate it’s self comes into play. The liver is the only organ able to regenerate. The liver can regenerate back to full size after surgical removal with only 25% left. If there is cirrhosis this can not regenerate itself. His was all good and has regenerated itself. How fortunate he was. What a wonderful organ being able to do this.
1990 my first of 3 tattoos trying different tattoo parlors. A new one parlor opens I better try it out.
1992 witness an accident and was helping the victim until the medic’s arrive. Blood soaked towels in my hands.
1992 started the treating of myself to many pedicures. Let’s not forget the one when they sliced the side of my toe with that steel buffer. Soaking my toe in the pan that everyone before and after me used. Wiping it out with alcohol. Life continued on.
Children graduating, starting families of their own and all is good—so I thought.
Have you counted how many bags I have picked up? More than my fair share I’d have to say. How many have you picked up?
2010–Six years ago I had a feeling like something was dying inside of me. Brushing it off thinking it was the loss of my niece on Saturday. Then on Thursday the loss of my father, one of my best friends. I just kept up with the routine of taking care of my mother who had Alzheimer’s. The feeling just kept on going. This feeling would not leave. Maybe it’s questioning the care I was giving my mother. I’m doing what’s right for her. Grief counseling, caregiver classes. These did not help. I finally thought maybe it was my gallbladder and was tested for that. Test came back all good. It must be anxiety. The pain is still there is it ever going to leave. As each year went by the dying feeling still existed in my body. June 2015 my daughter was diagnosed with cervical cancer. Shattered is the only word that comes to mind when I was told. The feeling of dying inside became intense. How I’m I going to handle this? Not good at all. How can I be strong? I didn’t think I could be, but when my daughter said to me “mom it’s going to be alright. Can you please be positive for me?” Her strength, courage and positive attitude towards this horrible disease gave me the strength to carry on. July of 2015 I could no longer care for my mother. Emotionally and physically exhausted the decision was made. We put her into a nursing home. August it was time for my daughter’s surgery and possible treatment. Successful surgery and no treatment at this time. Ok it’s my time. I thought I should go back and start to explore everything again. Gallbladder was not functioning properly this time, so it was removed and the surgeon said you better get to see a specialist in gastroenterology immediately. I see cirrhosis. Wow how can that be I don’t even drink I thought. How fair is this? Why me? And all the pity party questions started. Made an appointment with a gastroenterologist I was told fatty liver disease. What I thought how did this happen. I’m not overweight by any means. The doctor said years of sugar, carbs and soda. You need to watch what you eat. Paleo diet is recommended. Hum yes I always had poor eating habits this must be it. See you in six months the doctor says and off I go. Taking this seriously by the first of the year I lost 25 pounds and I was down to high school weight. In January 2016 my mother passed and this feeling still has not left me. Is it the grief of the loss of my mother? Probably I thought. February I had a multi-phasic blood test done. Received the results it was like being hit by a Mack truck. Liver enzymes elevated by triple digits, iron levels through the roof and platelets so low. Is this even my blood work I questioned? I’ve never had any issues with these tests. I look deep inside of my soul and asked myself is this sense of something dying inside real or is really grief? NO, it’s not grief I said. Its time I can no longer take care of anyone else but myself. Made an appointment with my PCP, after looking at my bloodwork, he strongly recommended an appointment with a hepatologist. The hunt was on. With my daughters strength, courage and determination she found a doctor with John Hopkins and I found one with Allegheny Liver Clinic. We each made an appointment with two different hepatologist. The first appointment was in Pittsburgh. Multiple tests- Ultra-sound, MRI and bloodwork out the you know what. While waiting for the appointment with John Hopkins; test after test where coming back most of them pointing to nothing major, but together It was pointing to something destructive. Later in March low and behold my diagnosis came from Pittsburgh: hepatitis C. Three days later was my appointment at John Hopkins. I was going to cancel this appointment but I thought I should keep it for that second opinion and to make sure that Pittsburgh was on the right track. Both doctors agreed with this diagnosis, I needed treatment right away. After I picked my jaw off the floor and managed to compose myself I could feel a great wall of anxiety come over me, but it may have been more of a stunned feeling. It was not one of my most favorite days. Most people who are given the diagnosis are part of the baby boomers generation, like me. And I think that once over the initial shock I start looking for solutions and answers. Crumbling under the fear caused by not understanding what it means, I think it is because I had to be informed order to survive, even at the most basic level. The old “fight or flight” or anxiety reaction sure start up in this situation. I continued to fill my bag now with anger, self-pity, depression, feelings of being a pariah, being labeled. Worrying about who did I or will I infect with this disease. I’ve been put on the list. What list; infectious disease list that the department of health keeps. Told to have my organ donor taken off my driver’s license. I can no longer help someone with this donation, but now I may need that liver someone else is willing to donate. I never can return the favor. Embarrassed to tell any family that they need to be tested. Husband and children who all tested negative. Sheltering myself in my house where I segregated all my toiletries in bag away from everyone. I ate from plastic silverware and paper plates. Then work where I was afraid every day that I might get cut and then I would have to tell them to stay away without gloves. Asked to a gathering absolutely not afraid to eat off someone else’s silverware in fear I may infect them, even knowing this could not happen. Dentist and eye appointments I now have to tell them I’m infectious.
No matter how I reacted on the news of having hepatitis C I knew that it is bad news, even if I was unaware of the details of how I contracted this. Knowing all about the virus, how it works, what can expect to happen, and all the rest can be discovered. There are several things, which appear beyond our control, and decisions seem to be up to others almost from day one, but one area we have some power in this is how we choose to deal with these things. I chose to be as well informed as I could be. Reading everything I could find on this subject. Maybe sometimes reading too much. Now I knew I was ready for battle. My liver was filling with iron blocking it’s ability function. That became my shield to become the warrior I needed to be to extricate the dragon I had become. I will succeed to being cured. I will take care of myself. So take heed. YOU ARE IMPORTANT!!
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