Hepatitis C Treatment Update #2

So I got my test result yesterday, the ones that let me know whether or not treatment is working. It is working but it’s taking the long way around. Let me try to explain. When I first started treatment my viral load was in the 636,000 range as of yesterday it was 17. That sounds awesome, but where I was really hoping to be was 0 or not detected. Being not detected would have meant that the virus was gone from my system and that I had only about 19 more weeks of treatment.

Where the doctors wanted me to be at yesterday was not detected or >12. Being at 17 is higher than what anybody wanted, but it is low enough to say that treatment is working, and that I will continue treatment for about 43 more weeks. If at the 24 week mark my viral load is not at 0 or if my viral load is above 100 at my 12 week check then treatment will stop because it is not working.

This all means that treatment is working for now, but we don’t know if it is going to cure me. It also means that if everything goes well, I have 43 more weeks of treatment, which is 43 weeks of feeling like shit. I really do feel awful. I told my friend yesterday that it was like being 100 and going through puberty at the same time.

My joints ache all the time, especially now that winter has started. I normally have joint pain because of my CP, but the medicine are exacerbating the pain and sometimes my hips hurt so bad that even sitting causes pain. It takes me FOREVER to do anything. I was no racehorse before all this; but now, I am like earth rotatingly slow. As in you can only tell I am moving by charting the sun, taking time-lapse video, or creating some complicated pendulum experiment. My grandma could beat me in a footrace and she is in her nineties. My mind is in a fog. The other day I came home from work, fed Taden went to the bathroom, let Taden in and then tried to feed her again. I saw the food in her bowl and realized I had already fed her, but had to struggle before I remembered doing it. It was actually a little scary. Mostly, I am just having a lot more of those, “why did I come in here?” moments than usual. All I ever want to do is sleep. I crave sleep the way children crave their Halloween candy and the way smokers crave that cigarette. I need it, and I need it now or life as I know it will come crumbling down. Give me sleep or give me death and all that mumbo jumbo. On top of all that, my face looks like it got hit by truck containing the hormones of a dozen thirteen-year-olds and I am in a perpetual state of annoyance. Just talking to me at this point may elicit an eye roll or a heavy sigh.

So I am training my husband for life in retirement as well as life with a teenager. I am not quite sure how much he can take. He is stressed out and short tempered and not sure how to fix it. Of course he is thinking big. He already wants to find a house that’s easier, or move us back to the main level both of which I refuse because moving creates more stress and that first level room with its drafts and hard wood floors is too hard on my poor little old lady joints.

43 weeks as a long time. And then we have to wait 6 months to find out if it’s really gone. I will be nearly 32 then and the first 2 and a half years of my marriage will be over. Aren’t the first few years supposed to be the best? I feel cheated. I wanted to be a mother by now. I wanted us to be happily-ever-after, but instead here we sit in limbo, waiting. To say this is not fair is an understatement, but it is also completely useless, and so I will try to stay positive. Even though all I really want to do is throw the mother of all tantrums. I will keep trucking and I will try to smile even when I don’t want to. What else is there to do? At least treatment is working, at least the symptoms are not worse, at least my system isn’t tanking under all these medicine. At least I am still (mostly) sane.

At least, as always, I still have my amazing family and friends to support me through this.

Hepatitis C Treatment Update #1

I am currently working on a post about inspiration, but the words are not coming easily today. This happens. So instead, I thought some of you might want a little update on how Treatment is going. I am going to be pretty candid here, because I want to give a full picture of what treatment is like, so some of this might be over share. Just a warning.

For those of you that don’t know, I am on what they call “triple therapy”. This consists of a weekly injection of interferon; Telaprevir which I take three times a day; and Ribavirin which I take two times a day. In short, it is a crap load of medicine.  It has to be taken at very specific times and with certain foods. I take the Interferon on Fridays around 10 PM. Tom has been doing the injecting, and boy am I glad I didn’t marry a sissy. With the Interferon, I usually take Tylenol and Benadryl to prevent a fever and any allergic reaction. I take the Teleprevir at 7:00 a.m., 2:00 p.m., and 10:00 p.m.. Teleprevir has to be taken with 15-20 grams (or more) of fat so I try my best to consume lower fat foods for both lunch and dinner. The Ribavirin is taken twice a day at 7:00 a.m. and 7:00 p.m. with food.

Needless to say, I am eating a crap load of food. As of Friday, I have decided to bring stretch pants back. It's gonna be so hot. Thankfully, it's winter and bulky comfy sweaters are my best friend normally this time of year.

For the first four days of treatment I had no side effects. I actually started to feel like maybe I had this in the bag. Then, on the night before my first day back at work (and two nights before a trip to Traverse City for a work related conference), I developed a rash. It wasn’t any big thing. I took a dose of Benadryl at night, got a prescription for a topical cream and it went away. I was still able to attend the conference.

But since then, the party has really started; and by party I mean that embarrassing one your parents threw you at Chuck E. Cheese when you were certainly too old and definitely too cool. Or your Aunt Marjorie’s retirement party where everyone commented on what a woman you were becoming while your cousins made a game out of snapping your bra. Yeah, that party.

After my second shot of interferon, I experienced a fever as well as some fatigue and muscle weakness. I think these were made worse by C.P. Both Saturday and Sunday, I could not stand for longer than ten minutes without feeling extremely fatigued. By Monday, that had improved and I am noticing that if I force myself to get moving I can get the metal fatigue to clear pretty quickly. However there is a fine line. If I try to do too much, which for me seems to be more than a half an hour of physical activity at a time. I am completely wrecked. My legs shake and my arms burn with the effort of keeping me upright. On Friday I burst into tears mid-sentence while Tom and I were on our way to get my blood drawn, alarmed he asked what was wrong. I said. "I am just so tired." I cried for thirty seconds then sucked it up. Tom made me giggle saying "You can doooooo it." And reminded me that I was tough, I had this, and it was small potatoes compared to everything else I've been through.

When I am not dying of exhaustion, I simply can't sleep. Last night, I got two hours before Tom got up to pee and I was up for the rest of the night. It is frustrating. 
I either have chills, or I am sweating. Sometimes my body can't decided and I do both at once.

Now, because I am a sexy beast, I have added hemorrhoids to my list of side effects. Let me tell you, if you ever need to be humbled, hemorrhoids will help you get there with a quickness. Not only is it embarrassing to admit to, they are painful. The kind of painful that makes you want to punch someone in the face.

I am also irritable, and have developed either a rash or acne all over my face. I have never experienced skin this bad in my entire life. So in short, I'm fat, irritable, emotional, weak, tired, covered in zits and it hurts to poop. It's a good thing I already got the wedding out of the way. I am pretty sure that for better or worse, in sickness and in health covers ugly.

My first blood draw was Friday. I am hoping that my viral loads have dropped and that all these awesomely wonderful side effects mean that my body is kicking some serious Hepatitis C ass.

A New Diagnosis

When you take those vows on your wedding day, “for better or worse, in sickness and health” I think most people assume the same thing: that we will never be tested, that God, or the Universe, or Karma will be good to them, that their lives and the marriage will be happy and healthy and good. I know that it’s what I assumed. I never imagined that during our first year of marriage Tom and I would face challenges that we never expected, that we never saw coming.

Remember this post? Well as it turns out, my health symptoms were caused by my birth control, but not for the reasons I expected. After going to my doctor for extreme fatigue, which I feared was related to diabetes, I found out that I have Hepatitis C.

Hepatitis C is a disease caused by a virus that infects the liver. In time, it can lead to permanent liver damage as well as cirrhosis, liver cancer, and liver failure. Hepatitis C can go undiagnosed for years because it often shows no symptoms in the early stages and is not part of any routine blood testing. My doctors seem to believe that I contracted the disease shortly after I was born through, either by a transfusion or surgery. That’s almost thirty years. Twenty-five of which I had no symptoms. Once I started having symptoms, they were so vague that no diagnoses was made right away.

Right after my diagnosis, I was ashamed and I was angry. I was ashamed, because I thought that maybe somehow it was my fault. I thought that anyone that knew might judge me or think less of me for something that wasn’t even my fault. I was angry that the measures taken to save me so long ago might have hurt me. I was angry at the unfairness of it all. Why did it happen to me? Wasn't Cerebral Palsy enough? Had I not been poked, medicated and cut open enough for one lifetime? I cried a lot. One minute, I’d be fine, and then the next I would be sobbing because I wasn’t the same;I was diseased and my life was never going to be the same. Tom was awesome. He hugged me and told me he loved me. Upbeat from the beginning he said, “This is right now, but it is not forever.”

I remember thinking at one point that this must have been the way my parents felt after my diagnoses of Cerebral Palsy. They would get caught up in my smile, my laugh, my antics and then they would remember the doctor telling them that I might never walk, that I wouldn’t be like other little girls, that I might not go to college, or get married or have kids. They would wonder how people might perceive me, whether or not I would be accepted by other children, or if one day someone would see past the disability and fall in love with me.

That’s when I realized this diagnosis was just that, a diagnosis, one that needs treatment. There is no reason to be ashamed, no reason that it has to control or dictate what my life is going to be. In fact, just like with my Cerebral Palsy, I may be able to help other people going through a similar experience. So despite the fact that some days I am still ashamed, still think that this is unfair, I’ve decided to share my experience with this disease that effects 4 million people in the US. 

I start treatment for Hepatitis at the end of October. I have been told that treatment is difficult, and I am not sure what the next year might bring. My husband and family and friends comfort me and give me hope. They are so supportive. Without them, I would still be wallowing in self-pity and I never would have had the strength to write this.

I was born and fighter and I will die a fighter, but NOT from this disease. Let’s go. I’m ready.

If you want to learn more about Hepatitis C click here.