Friday, April 30, 2010

A View into my Looking Glass.......Dottie's Story

Would you like to take a journey down my rabbit hole?

(had picture of Alice in wonderland here)

I imagine that at this time you’re wondering why the ''Alice in Wonderland' reference? Well let me begin by saying that my journey through finding out I had HCV dealing with the fact, treating and the final outcome started as something completely surreal, much like looking through a looking glass into my own life . There I was simply going through life, working, raising a family, bought a house and was doing everything the way that I thought I should. Like so many people in this world I woke one morning and something simply wasn't’ right. Was it symptoms of HCV, no, and that is the part that still to this day still scares the crap out of me. HCV can live and breed, growing and eating at your insides, your organs, chipping away at your life expectancy and you never once know it.

So there I was off to the hospital, my heart racing feeling really scared. Upon arrival at the hospital I was checked in the heart problem corrected for the time being and the array of tests began. A nurse came into my room and asked me “why do you have low blood platelets”? The only thing I could think to tell her was “I don’t know." I had absolutely no idea at the time what a blood platelet was. I was checked into the hospital, tests galore, I had a cardiologist, a hematologist, for the mysterious blood platelets and a gastroenterologist. Not one of these doctors could tell me what was going on. After having a liver scan in nuclear medicine the tech there was talking to me telling me my spleen was enlarged and my liver appeared to be cirrhotic.

I asked him what this would have to do with my heart and he said as far as he knew nothing. A week later I was discharged and told to meet with the gastro doctor in 3 days and the cardiac doc in a week. That there were several tests run and the results would be in soon. The cardiac doctor told me to cut out salt and caffeine and gave me a prescription to regulate my heartbeat; he attributed a lot of it to stress and being a woman. Oh the joys of being a woman....

The gastro doctor told me to quit drinking, DRINKING!!??

I told him I didn't’ drink; you know the occasional margarita a few times a year and a glass of wine here and there. The man looked at me like I was a liar. I didn't’ get it. The hematologist was talking about a bone marrow biopsy. I went home that day, filled with questions, no answers though. I went back to the hospital 2 days later and got copies of my records. As I read through what basically made no sense, there it was HCV positive!!!

My point to all the above,

WHY DO DOCTORS NOT RANDOMLY CHECK PEOPLE FOR HCV!!!

There are several ways that people can contract HCV, and honestly I could care less how anyone gets it as long as they do everything in their power to get rid of it. Personally, after talking with my doctor, the best explanation that he and I could come up with was that I got HCV from a blood transfusion. I was in a car accident when I was 12 and it was years before blood was tested. ( no old lady jokes ) It is neither here nor there where it comes from like I said, but this is my story so I put this part in.

When I read the news that I had HCV, I did like so many other people do. I thought I had been handed a death sentence. I freaked out!! I cried, I thought my days were numbered and I set out to find exactly what that number was. Would I live days, weeks, months or years?

I decided that the Internet had the answer to these questions. So I clicked on every link I could find and read. In the meantime I saw my doctor and told him I wanted to get rid of this ASAP!!! My med's were ordered and I was waiting for my insurance company to approve them. Why an insurance company had the right to approve or deny my treatment was and is a whole different story that I won’t even begin to get into now. It should be a gimme your sick there are med's here you go. But anyway….

I found my way to a forum that you could post questions to and you could also read other peoples questions and answers. This seemed like a wonderful place to me. People that actually got together to help one another. Let me tell you all, what may appear to be a blessing can be your worst nightmare.

Try to remember that a lot of these people are on treatment and we will get into some of the physical and mental side effects of these med's in a bit. But also remember that many of these people are completely insane and their only reasons for getting to know you are to gather personal information about you and to in one way or another take advantage of you or try to hurt you. All I am saying is BE CAREFUL of what you tell strangers. Their kind words are nothing more than candy in the cyber world and you know what mom told you about taking candy from strangers. Then finally I found my way to Delphi. This place is filled with good information, by all means though be careful here as well, same reasons as above.

OK, so I am at work when my box of med's arrives. My insurance company chose to use a drug supplier that mailed my med's to me, it was actually quite convenient. They came every 3 weeks in an unmarked box simply labeled refrigerate upon arrival. Many people believe that once they begin treatment that they should quit work and crawl into bed, I have to say I find this to be the absolute worst advice that anyone could take. Granted there will be times that you will want to crawl into a hole and die and other times that you just can't make it, take a day or two off, but keep your mind challenged and on other things besides feeling like crap.

In the long run it will keep you sane, or at least close to the level of sanity you started with. My treatment lasted 84 weeks, and I averaged about 2 days off a month. I do not have a job where I am working with dangerous equipment or in a field that peoples lives are in my hands. Had that been the case then my above advice might be a bit different. The job that I do have is managing an office, one of the highest volume insurance agencies in my area. So yes attention to detail was important.

Onto 'The Treatment' WOOOO HOOOO this is fun NOT!!

So the big night arrives, I have my arsenal of things at the ready that I was told I would need. I double checked everything, blankets, heating pad, some Tylenol PM and gave that up quick, a bucket to puke my brains into if the need arose, my shot and my riba. OK I was ready, I popped my pills hopped online and was ready, I admit the shot confused the hell out of me for a while. I had spent some time talking to my new online friends for a while about the “Big” night and I knew they would help me through any questions might have. I was told by numerous people that the first shot was the hardest.

So I was prepared for almost anything, I thought. Knowing that the effects of the shot would take a few hours to reach the worst of what I was about to endure, I decided that Friday nights would be the best time so that I had the weekends to get over the worst of the effects. I mixed the absinthe aka peg-interferon ( I know bad comparison but who ever said I was right in the head ) and poked myself in the thigh. There done, now I was left to wait…..

I sat in chat for a few hours and then the feverish feelings began to set in, they turned to a full body shake and… well…. I thought I was about to meet my maker. But alas, I was just fine. Yes I felt like crap for the next day I ached a bit and wound up in bed for the day. But I knew that was the worst and the rest should be OK. Right? I think not. Like everything else in this world there are good times and bad times.

Treatment was no walk in the park and the longer I was on it the weaker I felt. My blood counts bottomed out. My platelets were almost nonexistent. I wound up not only doing the maximum amount of interferon and riba but got to throw a bunch of yummy other drugs into the mix. Neupogen and Arenesp, Arenesp is basically a long lasting form of Procrit. On more than one occasion my doctor wanted to reduce my interferon due to my blood levels dropping so low. from the beginning my doctor and I had an understanding, I wanted to do this treatment once if at all possible and not waver on the dosages.

I had a personal belief that if my dosages were lowered or I was taken off treatment my system had the chance to build an immunity to the drugs and there was no way that I was going to chance that. Now you have to understand that this is just my belief and there is absolutely no medical research that even hints that I am right. My story my beliefs if you think I am insane you may be right but write your own story….

OK now that you now one of my theories time for another, the protocol for treatment is something like you are suppose to clear at week 12 and then continue treatment for an additional 36 weeks. Well folks, what if you don’t clear at 12 weeks? This bothered me A LOT.

I made an appointment with my doc to discuss this with him. I told him that I felt that no matter what week you cleared at, if you cleared in the first place, that I thought that the additional 36 weeks should begin then. He pretty much dismissed me at this point and said that he was the doctor and would decide what was best for me…. Blah blah blah….. yay you’re the doctor, we were talking about my body not his. So the pcr’s began… my counts were coming down but I was not clear. Not at week 12, 24, 36, but alas at week 48 I cleared. so doctor know it all said do you really want to go an additional 36 weeks from now? My answer to him was a clear and direct YES.

At this time, he now had to apply with my insurance company again for extended treatment. He could show that the med's were working just at a slower pace that optimal. He sent me home with 2 more shots that he had as samples and another bottle of that wonderful riba…. Insurance approved and I was set for my additional 36 weeks.

Be right back I need another cup of tea to finish this……

OK I’m back, hmmm how was I feeling at this point? Like road kill!! Seriously, my hair was dead, I chopped it all off, the only way I could sleep was with the aid of Ambien, the pain in my bones and joints was so bad I was eating Vicodin like candy to function. But dammit I was not going to let this stupid HCV beat me. I had 2 platelet transplants because they dropped as low as 10k and the average number of platelets in a persons body is suppose to be around 250k. the closer I got to the end of my treatment the less and less I wanted to take those friggin shots. I hated them all of them. The neupogen and arenesp burned like hell, made me hurt like you wouldn’t believe.,But I still had my friends on Delphi.

I made chat each and every weekend to laugh and carry on. This was my escape from the pain the misery. I met several wonderful people and several real snakes in the grass.

I can honestly tell you that the group of people that I met and know from this chat room and forum were the absolute best!!! Bette our legendary forum host here has become not just a friend to me but she will forever be family in my heart of hearts. There were nights that I was ready to give in and just simply quit treatment.. I would call her and be all whiney. She would offer me some cheese to go with it and tell me suck it up take your damn shot!!! There were other times I called her weak and just feeling defeated, and she would listen and comfort me. I am truly blessed to have her in my life.
So I guess this about it, I am still clear, 2 years YAY ME!!!!
Time will tell what our fate will bring, but if my story brings you nothing else. Remember its your life, live it!! It is short and make it last as long as you can for never know what wonderful people will enter your life and forever change you. Treatment sux but if it works you have extended your life. I melt inside every time I look into my daughters eyes and know that because I sucked it up and made 2 years of her life a little harder by watching mom fall apart.. I have quite probably added 20 years to our time on this planet. Be well all

Dottie

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