by Pokie Parmidge 2012
This story is not intended to be anything more than what happened to me during and after treatment for Hepatitis C. This is not to say what will happen to you if you take the treatment, but maybe you will be more informed than I was as to what to expect. I will not use my doctor's name as I truely feel, in his blundering, he was doing what he did with my best intrests in mind.
My story starts with me entering my 50s, life was pretty good. My daughter had entered high school and my wife and I had found a kind of "status quo" in our marrige. Things wern't great but they really wern't bad either. I was a stay at home dad and my wife was the bread winner. After a time, I started feeling run-down, low on energy. My daughter didn't notice but my wife felt I was just getting lazy. I made an appointment with my General Practioner to see if something was a-miss. She did the usual general physical stuff and blood-work. Everything looked ok but I was getting older and she felt I should have a colonoscopy.
After a lot of humming and hawing, I finally made an appointment with a gastroenterologist. We had a talk about what to expect and what to do to prepare for the colonoscopy. First thing was to get a full panel of blood-work. After my blood was drawn and analyzed, I was called to get the test done over again. I didn't quite understand why but I complied. The gastroenterologist's office then called me to make another appointment. When I asked why, I was met with the usual stonewall of "I don't know". This made me very curious and just a little bit concerned.
I went to my scheduled appointment, like a good doctor-fearing man. In my meeting, the doctor told me I had Hepatitis C. Well, I had no idea what it was and no idea how I contracted it. The doctor went on to tell me that as the Hepatitis C got worse, I would probably need a liver transplant and would likely die from it. This scared the crap out of me, I have never been told by a knowledgable person that I had better get my affairs in order. When I went home and told my wife, her reaction was, "You likely gave it to me, maybe even my daughter!" Not the reaction I was expecting.
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What I looked like before treatment, a vision of health. |
Now I've got to say here, all parties above over-reacted. I don't know why my doctor said what he did except to scare me on purpose. My wife's reaction caught me totally off guard, I actually found it kind of disturbing. At any rate, if you or someone you know is told they have Hepatitis C, I'm here to tell you that it's not a death sentence, not even close. It's just as likely that you will die from old age as Hepatitis C. Once you are told you have Hepatitis C, the best thing you can do is to learn as much as you can about the disease. Get on the internet and read, ask questions and read some more. Knowledge really is power, in this case, the power to know what is best for you.
As to how I contracted Hepatitis C, well, that still has me scratching my head. My doctor's suggestion that the most common means of contracting Hepatitis C is from sharing a tainted needle with a fellow drug addict made me feel dirty, I didn't want anyone to know I had it. The fact that drug addicts get Hepatitis from sharing a tainted needle may well be true but through reading and self education, I have come to find there are many ways Hepatitis C can be contracted. You can get it from your dentist, health care provider, even your hair dresser or barber. Hepatitis C can only be contracted by blood exchange. You can't get Hepatitis C from being sneezed on, you can't get it from licking a dumpster and no, you can't get it from sex. That is, unless, blood is exchanged. Remember that neighbor kid that you hung around with in fifth grade? You liked each other so much you became blood brothers, well, that may be where you got Hepatitis C from. If you and your partner have open wounds and you push them together or if the barber scrapes your head without sterilizing his scissors, these are ways you could get Hepatitis C. BLOOD EXCHANGE. If you are worried about contracting Hepatitis C the next time you get a Flu shot, get blood drawn (or any time a needle is used), ask the health care provider to use a new needle (which they should be doing anyway). This request should not upset or irritate the health care provider in the least. They are trained to use new needles with each injection and when you ask, they know you are only watching out for your own health and safety.
Back to my story. I went ahead and got the colonoscopy at my gastroenterologist's request, thankfully, nothing was found. He then wanted to take a biopsy of my liver to see how far the Hepatitis C had gone. I also submitted to this. He gave me some good news saying my liver was healthy with some fatty deposits. The doctor then reiterated that I should take the cure if I wanted a long life with no more troubles from Hepatitis C. When I queried about the possible side affects, he told me I would simply feel "flu like" symptoms. I told him I would think about it and get back to him.
When my wife got home from work, I tried to talk to her about taking the cure. She told me she wanted no part of making the decision, I was on my own. I asked her to come with me to the doctor's office to talk to him, but she wasn't going to have any part of that either. The only thing I got from her was that she would pay the deductible on the drugs but that's all. When my daughter got home from school, she said she talked to one of her teachers about the Hepatitis C cure and she was told it was hog-wash and a waste of time and money! Well, with all that support (apply sarcasm here), I knew the decision was up to me and only me. I read up on the "cure" but couldn't find much on it, just the same old "flu like symptoms". So, I decided to go ahead.
The doctor gave me a prescription and I proceeded to try to get it filled. The pharmacist's eyes jumped open and told me the drugs had to be specially ordered and would take a day or two. Ok, I thought, that should give me time to get ready. Upon going back to the pharmacy to pick up my special drugs, I found they were not being refrigerated as required. When I asked why they weren't being refrigerated, I got this look of "Damn!" I was then told I would have to come back in another day or two for new drugs. Wow, I had no idea how expensive these drugs were going to be. I had to take 10 Ribovirin pills a day at $15 a pill (five in the morning and five at night) and also one shot of Interferon a week at $900 a shot! Because of the mess-up at the pharmacy, my shot night ended up being Wednesday night. Giving myself the shot by pinching up the skin on my leg and poking the needle into the pinched up area. I gave myself the shot while sitting on the edge of my bed then just falling in after the deed was done.
After a week or so of doing the pills and a shot, I thought it wasn't too bad. Yeah, I was feeling crappy, like I was warned, "flu like symptoms". As the days turned into weeks and the weeks turned into months, I got so sick I could barely eat. I couldn't walk any more than about half a block and going up stairs was out of the question. My time was filled with the feeling I was going to throw-up just rising up out of a chair. When I pushed myself to take the dog for a walk, it wasn't uncommon to black out part way through the walk. The blacking out didn't last long, I would just sort of fall down, sit for a moment then get back up and finish the walk. When I told my wife I couldn't take the dog on walks any more, she didn't take it well. I had signed up to drive a snow plow that year. I got the job done but the only thing that stopped me from falling over was gripping the steering wheel. I could no longer walk the dog or shovel the sidewalk, heck, it was all I could do to make it to the bathroom. My doctor warned me that I may have thoughts of committing suicide but I never did. There were times I was very depressed and thought if I died, I wouldn't care. In fact there were times I wished I would die but never once had thoughts of doing the deed for myself. Talking to a friend of mine that lived the next town over, she would come down and take me to the doctor's office once a month as my wife wouldn't and I couldn't. The people in the doctor's office got to know my friend and never once met my wife. Over the 11 months of the chemo "cure" I lost 47 pounds.
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A photo of me during treatment. After a couple of months on the Hepatitis C treatment, my hair was coming out in clumps. To avoid looking like I had mange, I decided to shave my head. |
My wife, out of guilt I guess, started taking Thursdays off. Wednesdays being my shot night, I wasn't much good for anything on Thursdays. Over time, Thursdays became fight day. My wife would stay home and yell at me about all the things I wasn't getting done. This is also where I discovered how the chemo drugs were affecting my brain. When I was able to get out of bed and sit at the table, my wife would start badgering me with questions. I could hear the questions, I could understand the words but I couldn't put together the words or understand the questions. I couldn't think! I knew what day it was, I knew who she was but I couldn't think. Something as simple as "What do you think of the weather we are having today?" I knew what the word weather was, I just didn't know what to think about it. Right about this time, the battery went out on my truck. I went out and got in it but when I turned the key, it wouldn't start (actually wouldn't do anything). I had no idea what was wrong and had no idea what to do about it. I'm a mechanic for pete's sake and I couldn't figure out what was wrong with my truck! Turns out all it needed was a new battery, about a month after I was off the chemo, I was able to figure out what was wrong and fix it.
After some time of my wife yelling at me and calling me lazy, I was starting to get concerned that she was either going to start hitting me or throw me out. One night while I was falling asleep in the living room, she was working on the computer. The computer "blue screened" and some kind of warning came up. I knew what was about to happen so I left the room. She slammed the computer shut (it was a lap top) and cursed. When she saw I had left the room, she came looking for me. When she found me sitting on the edge of my bed, she asked why I had gone. I told her that over the last few months she had become abusive and with the computer packing up, she was going to start yelling, so I decided to get out of there. When she heard that, she exploded! I don't remember what was said but she ranted on for some time before stomping up the stairs to bed. It was then that I made the decision to leave, I may have been sick but I had had enough. The next day my wife, without a word, took my daughter to a track meet. I packed a couple of bags and was pondering spending the next night in the homeless shelter. Before I left, I called my friend and told her I was leaving and that I couldn't take any more. She told me to wait and she would come down for us to talk about it. While I was waiting, I packed a few more things and said goodbye to the cat and dog. When my friend got there, she suggested I go to her house and stay in her back room instead of taking my chances at the local shelter. So I did.
A couple of weeks later I finished my last round of chemo. This is also about the time I filed for divorce. About a month after that, the doctor informed me the "cure" didn't cure. I went through all that money, lost my family and even lost my brain and it was all for nothing, I still had Hepatitis C.
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After treatment, trying to get back to the lost normal. |
This was my story, right or wrong, good or bad. At the time of this writing, I still have Hepatitis C, I have no interest in trying the cure again. A new drug has been introduced to be taken along with the others to try to cure Hepatitis C. If you are told you have Hepatitis C and you are considering taking the "cure", please consider the way it will change you, be sure you are with family and friends that will speak for you when you can't, will make decisions for you when you can't, even care for you when you can't. Please also consider how rash decisions will change the lives of friends and loved ones. Because of my rash decision, my daughter will not see me, at the time of this writing, it has been four years since I've seen or heard from her.
Good luck!
Copyright © 2012 Pokie Parmidge