Archives for posts with tag: liver disease

Back to taking 4 hour naps, and my hemoglobin has gone down again. It was at 8 a week ago, and I had more blood drawn yesterday. Very curious to see what those results will be. Had a missed call from the doctor so either they are telling me I’m down again, or they are confirming the procrit rx. I hate phone tag.

I had to call the nurse a few days ago because for the past two weeks the insurance company has been calling me saying “further action is needed by my doctor’s office” in order for them to ship the procrit. Apparently this doctor has a separate division that handles preapprovals, and they dropped the ball. I’m really hoping they get this done within the next couple days because it is becoming apparent that I am going to need the procrit. I’m sure as soon as they up the riba the hgb will go right back down to 7, and I am dysfunctional at that level.

However,  I am still feeling a lot better than I was when I was on the telaprevir. I am not as fatigued when I am awake (which is about 11 hours out of the day), and even though my potassium is right at the threshold for normal (at 3.5 exactly) my muscle strength has improved quite a bit. Also, my brain doesn’t feel quite as “fuzzy” since I stopped the telaprevir. Vision is still blurry and I really need to see if I can get into an optometrist for a retinal scan. I hope they will bill my medical insurance since this is a medical issue. I don’t have vision insurance.

I have been doing pretty well in school (all A’s so far, whoo hooo!). So, if you are asking yourself if you can do school and treatment at the same time, I would say yes. You do have to know your limits though, and you have to stay on top of the side effects. Another thing to consider is that I live by myself, no kids. So you have to look at what your support system is and what other responsibilities you have. Also you have to really want the degree you are going for. This degree is something I am really passionate about, and if I didn’t feel that way about it I don’t think I would be doing as well.

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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!


Day 3. Thank god for zofran. It totally took care of the nausea and vomiting. Didn’t want to puke up any of that $20,000 worth of meds.

I have been sleeping A LOT. I feel pretty good when I’m awake, but will lay down for “a little nap” and wake up three hours later. Around 3:30 I noticed what looked like a heat rash on my feet. By 4:30 it was on my tummy, back, chest, inner thighs, and forearms. Only itches a tiny bit occasionally, gold bond lotion  takes care of it, and it isn’t too noticeable. I thought maybe I was imagining things, but my peeps at hcvsupport.org tell me that they experienced the same rash within the first couple of days. They think it is telaprevir doing it, because they have experienced “riba rash” before and tell me it is a different type of rash.

Overall, felt good enough to make the 2.5 hr trip home (Mom drove). The doc called twice to make sure I was feeling ok (on a holiday weekend!) and gave me his cell phone number in case I needed anything else. He’s a good guy.

When I got home I took (you guessed it) a nap, then took my brother’s dog out for a walk. It is the doggie’s first fourth of July and he loves fireworks. He has learned to look up for the sparks once he hears a boom. What a smart puppy.

Happy Fourth to everyone (a day early) and a special shout out to my friend Dawn, who is starting her treatment tomorrow on (Hep C) Independence Day!

 


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).