Archives for posts with tag: hepatitis

I went on a HIKE yesterday! My first since starting threatment! Granted it was only 2 miles, and prior to treatment 6 miles or so was my average, but it felt SO GOOD to be out!

This is where I am giving the procrit a lot of credit. I still get fatigued really easily (as in, I still need waaaay more sleep than the normal person) but I don’t get short of breath and I don’t feel like I am going to pass out. My heart rate got up pretty high, but that is just because my body isn’t used to the activity.

Went to a yoga class with my friend from nursing school on Thursday and fell in love with it. At the beginning of the class my back was KILLING me sitting in lotus position. By the end of it, whene we came back to lotus position, my back wasn’t hurting at all. I actually slept less than usual that night but woke up feeling more refreshed. I think this is going to be the perfect way to gently get me baack in shape as I near the end of treatment. The meditation component helps a lotwith the anxiety, too.

I’ve always wanted to get into yoga but there are so many different styles of practicing that it was frustrating for me to find sa teacher whose style was compatible with what I need. (meditative, but not so much that I fall asleep, spiritual but not airy-fairy, and strengthening without being punishing). Went out and bought a chai yoga mat by gaiam, very cushy and not slippery. Anna and I are going to go twice a week ūüôā


I have decided to devote a post to this question because I have heard this asked so many times by people who are considering treatment and who are treating.

Most people don’t know that chemotherapy is not only used for cancer. It is used for hepatitis and in some cases of multiple sclerosis. I am sure there are other examples but you get the idea. Some people will say, “but isn’t any drug technically chemotherapy, since they are chemicals used to treat illness?” If you want to look at it that broadly, yes, but this treatment is also chemotherapy in the popular sense of the word. Here is why:

There are a couple of different types of what we traditionally think of as chemotherapy. Some of them are hormonally based, some are made from plant proteins, etc. With Hep C treatment, the part of the therapy that makes this classifiable as chemo is the interferon. If you are on Pegasys (peginterferon alfa-2a) it is the type of chemotherapy known as an “antineoplastic agent” and is made from human proteins. Go to this link for a better summary than what I am capable of:
Additionally, the same type of interferon is also used to treat certain types of melanomas and hairy cell leukemia, except in those cases they use higher doses than what we use in our treatment regimen.
Some people have called this “chemo light.” I take exception to that. Some of us have a very hard time with this treatment and to call it “lite” is misleading. Also consider that even though we take a smaller dose of the chemotherapy agent than someone with cancer, in many cases with cancer you do not administer the drug every single week for six months or more, but rather in larger IV doses spread out in time…so I’d think that in many cases it kind of “evens out” as far as difficulty of treatment. Our hair thins. We throw up. Our red and white blood cells die, our hemoglobin goes down…this is not something to take on lightly. I believe the benefits of this treatment outweigh the risks, especially if you are in reasonably good health to begin with. I will tell you outright that I am an advocate of treating. However, anyone considering this treatment should go in with their eyes wide open so to speak, and if you don’t think you can handle chemotherapy, then don’t take on this treatment because that is what this is.

I feel so good today! I took my fourth shot last night and fully expected to be terribly nauseous all day, as I have every other weekend, but I’m NOT!!!! I even ate a regular lunch.

I slept most of the day and moving around makes me pretty tired, but I am in a very good mood. Feeling like maybe I hit my low point last week and am on the upswing as my body adjusts to these meds.

Had my doctor’s visit yesterday, fell asleep in the waiting room because SIX people (including me) were scheduled to see my doc at the same time….surprisingly that didn’t make me angry, just sad at this evidence of what a shortage of doctors there is. I asked the doc if he ever gets to eat lunch (my appointment was at 11:45). He said “Me?? No.” He is just doing his best, like the rest of us. Too many patients to see and not enough hours in the day.

My complete blood count numbers were all still in normal range, slightly lower than last time but nothing to be alarmed about. I’m hoping this means I won’t have too many problems down the road with anemia. I have lost five pounds in three weeks, and he cautioned me that I need to keep the weight on. I think I will be able to since the nausea is getting better. My viral load test should be back this upcoming Friday, and I have another blood draw and see the Dr again in two weeks. I got a prescription for the smallest possible dose of ambien (5 mg) to help with the ¬†sleepless nights. Went to Walgreens and filled it and refilled my Zofran, and picked up some Walgreens brand bath oil.

I LOVE THE BATH OIL. I have been bad about applying body lotion despite my extreme dry skin, and I have a long standing addiction to hot baths. This oil made my skin feel almost back to normal after one bath. I rubbed it into my face and it feels soooo much better. That plus putting the Aveeno body butter on my feet and covering up with socks right after has been helping tremendously.

I’ve decided to work on “compartmentalizing” things mentally. I need to stop thinking about work when I am at home, and as bad as it sounds I can’t spend so much mental energy on other people’s problems. I am trying to find a balance between being a good friend and showing concern and support and making other’s worries my own. Also trying not to¬†obsess¬†about the results of the viral load test (please please please be undetectable).

I’m pretty excited about today being so good. I have to be in that wedding a week from today and I think that this is a good sign that I will be able to last the day. Wish me luck!

Ok I’ve got my blogging hat on again. Promised I would write about how I told my family, so here I go.

As I mentioned previously, I decided to keep my diagnosis to myself until I had more information. I did this for a couple of reasons. I needed to get myself together, and I knew my family would have a lot of questions. I wanted to have the answers for them. So, I researched. A LOT. I read about all the tests I would need, and how to interpret the results. I read about the treatment–what the drugs were, side effects, success rates, cost. I considered the possibility of NOT treating, if my liver were in good enough shape. I am a pretty open person so it was hard to keep this to myself for a couple of months. I usually tell my family everything. Plus, I was really worried that I had put them at risk and wanted to rush home and tell them all to get tested, STAT!.

I wound up telling them about a week before my hepatologist appointment. I wanted to wait until after the appointment, but I realized my younger brother would be going back to college and I wanted to tell everyone at once. I figured that way I they could all ask questions and build off of each other’s questions and my answers. I asked everyone to gather in my parents’ living room. This was awkward. I kept waiting for them all to just wind up in the same room but it never happened, so then I had to make a production out of it. Damn. ¬†Then they all knew something was up. I said, “Do you want the good news or the bad news first?” No one would pick, so I blurted, “The good news is, I’m not a hypochondriac, and I”m not just lazy! The bad news is, I have hepatitis C.”

First words out of my mother’s mouth: “REALLY?!?!!? (pause). I always knew something was wrong with you!”

Dad: “I thought you were going to tell us you were pregnant and getting married.”

Thanks for that guys.

Then they all just looked at me for a little bit, so I asked if they knew much about Hep C. Everyone shook their heads. So, I explained that it is a virus that attacks your liver, but that it is very slow moving and that most people do not die from this. I told them that lots of people never even know they have it, and that it can only be transmitted through blood to blood contact, not any other way. I pointed out that since it can be spread through things like nail clippers and tooth brushes, they should all probably be tested just as a precaution. I asked them if any of them had given blood recently, and it turned out that they all had…so we knew that no one else had contracted the virus, since they would have been notified.

I make this sound like I was oh so calm and cool about the situation, but in fact I shook the entire time I was talking to them. I didn’t want this to change the way anyone thought about me. By this I mean I didn’t want my parents to worry themselves to death. I knew they wouldn’t reject me or anything like that (I know I’m lucky). I did worry a little bit that they would wonder if I’d gotten this some other way than the blood transfusions, but it turned out that Mom and Dad had always worried about the blood transfusions I’d had as an infant. Thing is, that was back in 1985 when HIV was just being discovered, and people were VERY unaccepting of HIV/AIDS patients. A man who worked for the same company as my father was fired when management found out his young son had HIV. My parents were so frightened that I might wind up HIV positive, they never wondered about any other blood borne diseases. They didn’t have me tested for HIV, because at that time there was no effective treatment, and a positive diagnosis would have been of no practical use, and in fact would have been harmful. I can’t imagine what that must have been like for them, watching for signs of illness in their child and being afraid to have the test done that could have allayed their fears. Now I think they have been beating themselves up for not getting me tested for other pathogens as a child.

I told my(ex) ¬†boyfriend over skype. I know, I know, it sounds like a copout, but let me explain. He was working at a summer job in New York, and had scheduled a doctor’s appointment for a concussion (long story). Now this guy NEVER goes to the doctor, and I knew he wouldn’t want to make an appointment specifically to get tested. So, I told him the night before his doctor’s appointment, hoping that he would decide to have the test done while he was there. He took it really well. He wasn’t repulsed, as I had feared, and he wasn’t afraid for himself (at least not that I could see). He was very concerned about me, and angry that I hadn’t told him when I first found out (I waited to tell him originially thinking I would do it in person, when he returned form NY). We didn’t talk for very long–I gave him the facts and told him I would email him some information that he could look at on his own. ¬†He did read the info but wound up not getting tested because he had to cancel the appointment for insurance reasons. This still worries me, but it is his choice and I try not to pressure him.

So now my immediate family and a few close friends know. I haven’t told my grandparents because I feel it would only burden them, even though I know they will be angry if they ever find out from someone else (this isn’t likely). I know I am lucky to have people in my life who are so accepting. Unfortunately not everyone will handle this news as well as they did. ¬†This information is yours and yours alone to share or¬†withhold¬†as you choose. This isn’t something you should have to deal with alone, so I hope if you are reading this that there is someone you can tell. I hope someday that I can be more open about this disease, but until I am more established in my career, I will have to keep silent. That’s why this blog is anonymous (for now).

So, I didn’t make it back on here the day after. It’s Friday night now, and after a wild night at Culvers, I have returned to type. Not wanting to lie to you further, I’m going to admit up front that I’ve already pretty much forgotten what I promised to type about in this post,and I’m too lazy to go back and check. This is a large topic, and I’m sure I’ll get around to whatever it was eventually.

Here’s how my visit with my new infectious disease doc went:

First, I dressed up like I was going to a friggin job interview because it is important that your doctor take you seriously and listen to what you have to say.  Not totally necessary, but helpful. I would recommend at least brushing your hair.

Then, I waited in the waiting room for approx 1.5 hours. Not too unusual for a specialist, unfortunately.

Then I was shown into the exam room. By that time my bladder was full so I had a little conversation with the nurse that went like this “So I know you guys are going to want a pregnancy test as a condition of starting the treatment, and I’m just wondering if you all run that through a blood test or a urine sample? My point being that I have to pee, so if you’re going to need some of it you might want to take it now.” ¬†GREAT ¬†first impression. She told me to go ahead and pee in the cup in the bathroom just in case. I have a feeling that at the end of the day there was a confused nurse going..”um…whose pee is this?”

Then I met the doctor. Older white male who was surprisingly open minded. He had me lay down and palpated my stomach and ribcage area to see if my liver was enlarged (it wasn’t) and listened to my heart. He gave me the usual talk about how treatment is tough and can cause a strain on relationships and work. I know this is all legit, but I’ve already scared myself enough and thus found it redundant. Long story short, he approved me to start treatment with the new drug, telaprevir, in combination with the old standard of care, interferon plus ribavirin. My insurance requires preapproval, something the doctor’s staff takes care of. You’ll probably want to follow up with said staff to make sure they are actually doing this, and requesting the correct medication.

Then I went downstairs to the lab, where I made another great impression by insisting that if they didn’t let me lay down while they drew my blood, I would pass out (this is unfortunately not an exaggeration). I already had my ¬†glass of water ready as well as a moist paper towel to put over my eyes. I didn’t pass out. Yay. Did I mention I want to be a nurse?

The doctor wants to see me back in two weeks. I don’t know if he anticipates having the drugs ready for me to start at this time, or if he will just be going over the results of the blood tests with me. I’ll let you know.

Hopefully I will stay motivated and post some more tomorrow about treatment options and side effects. Night night!