Archives for posts with tag: telaprevir

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.


AND I’M STILL UNDETECTABLE! So, I officially only have to treat for 24 weeks.

With telaprevir, you check viral loads at the end of weeks four and 12…if your viral load is undetectable at both of those points, you treat for 24 weeks rather than 48 weeks. Telaprevir is stopped at the end of week twelve and the remainder of the therapy consists of the ribavirin and interferon only.

I stopped telaprevir a couple of days early and have now been off of it for a little over a week. For all of you wondering if it gets any easier once telaprevir is removed from the mix, I have to say based on my experience the answer is YES. I started feeling MUCH more energetic right at the one week mark. I don’t know what my numbers look like yet to compare (I got a CBC and CMP drawn today, so I’ll be able to comp in a couple of days) but I am willing to bet my hemoglobin is up, and most likely my potassium as well. I’m curious to see if my potassium stabilizes once the telaprevir is completely cleared. If it does we’ll know it’s the culprit.

I really hope I don’t jinx myself by writing this, but the difference in the way I have felt this past week is really remarkable. I even stayed up til three am studying one night and was still coherent the next day! I’m in awe. My face is no longer numb, the white circles around my eyes are starting to fade, and I can even walk briskly for short distances without feeling like my heart is going to explode. I am still at the 600 mg dose of riba, but I hope I can take it back up to 800 soon. Maybe I’m pushing it, but I am also optimistic that I might even be able to avoid the Procrit. We’ll see what my labs say. I really hope the upward trend continues, but if I could even just stay at this level for the rest of treatment I will consider myself darn lucky.

I am going to go celebrate by eating a brownie. Just because I feel like it, not because I have to (however I think the desire for Oreos has been permanently eradicated from my brain. I should call the FDA and report it as a telaprevir side effect).


Had my second appointment today, this time with Dr. Bacon’s nurse practitioner (she was in on my first meeting with him). Despite the rise in hemoglobin I have not felt any more energetic and am starting to worry about getting myself in a hole with my studies. She said I could quit the telaprevir now (it would only be two days early) but I am still leery of it. I know at this point it can’t make much difference, but it is almost like a superstitious thing with me now. Basically the only thing to do is get blood drawn again in two weeks, at which point the telaprevir will have cleared my system and my hemoglobin should go up a bit more. However, we need to get me back up to 800 mg of riba, and I have a feeling that as soon as we increase the riba the hemoglobin will go right back down and I’ll have to start procrit anyway. Oh well I guess there isn’t much I can do but wait and see and try not to get too behind study-wise. I also re-emphasized that I am a little concerned about my potassium deficit since no one knows what causes it and it seems to fluctuate pretty rapidly. My serum creatinine levels have been slightly elevated, so I’m concerned that:

A. My kidneys are being damaged

B. My liver might be in worse shape than was assumed, since I have never had a biopsy and that is the only definitive test (liver cirrhosis and kidney disorders can be linked)

C. My heart might be under a little too much stress what with the low hemoglobin and fluctuating potassium levels.

Got the same answer as before, just keep taking your pills, we don’t know what is causing it.

I got a CBC, CMP, and viral load drawn today around 4:00 after the meeting with the nurse practitioner. Today around 5:30 my cell phone rang. It was the on-call doctor telling me my potassium levels were too low and that I should go to the ER to have them administer it intravenously. I asked him what it was at and he said 2.7. I told him that back when I was first diagnosed with hypokalemia (low potassium) it had been at  2.7, and that I already have potassium supplements prescribed. He said if I didn’t want to go to the ER, to take a double dose of my potassium immediately, and arrange for another CMP first thing in the morning. And to still go to the ER immediately if I felt weak or dizzy….I said ok, even though I feel weak and dizzy most of the time already because of the other meds. Assuming if something life threatening was happening, it would get worse somehow. I would feel more comfortable if I didn’t live by myself at this point, but there’s no helping that.

I’m feeling ok, no worse than usual and no heart palpitations today (I was having some over the weekend) and the potassium has absorbed by now I’m sure. I’m glad I decided not to go to the ER because I’m sure I’d still be there….first I’d have to wait, and then once admitted it would take at least an hour to administer the potassium via IV, because if you do it to fast you can cause arrhythmia (I’ve been paying attention in pharmacology!). Also, potassium administered intravenously burns, I hate IVs, and ERs are full of sick people. Last thing I need is a case of pneumonia.

Which reminds me, I need to get my flu shot….and apparently make an appointment with an optometrist since my vision has gotten blurry. Have to make sure it isn’t “cotton wool spots” caused by the interferon. Yay!

Excited that Friday is my halfway point! Very nervous about the 12 week viral load. If it is not undetectable I’m not sure what I’ll do, because I don’t want to treat for a year and might not be physically able to, anyway. Fingers crossed!


Dr. Bacon called my cell phone today. Twice. No message was left so I called the unidentified number back…turns out he sat on his cell phone. My friends, this means two things:

1.) He took the time to program my number into his personal cell phone

2.) I now have his cell phone number. Muahahahahahahaha.

Just kidding on number two, I won’t use it unless he expressly gives it to me and even then only in dire emergencies. I already feel bad for having emailed him twice on a holiday weekend without actually being his patient. Which I apologized for in a somewhat discombobulated way once I realized who I was talking to. I think he still probably hates me but oh well.

Still waiting to hear if I am going to get to see him on either Tuesday or Thursday (which is what he said he is aiming for). It is midnight on Monday and I have class tomorrow….nerves are jangling. I HATE not having my days planned out in advance especially when something this important is on the line.

Thank God Mom is here, you think I am a mess now? Well multiply that by a thousand if I was here by myself.


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!

 


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!


So. Here I am, 26 years old, in general good health and with a relatively decent social life, up at 12:37 AM starting a blog about Hepatitis C. I never imagined that I would be doing such a thing, but lo and behold, it has happened. I’ve never been one for blogging, and I don’t even read blogs much…but I do know that the first thing I did when I found out was turn to the web, to learn from others who have beaten down the dirt on this road before me. Thank god for the internet at times like these. I just hope that if there is anyone out there in the position I was in–stunned, scared, and with a shaken sense of identity–that I can help a bit.

Tomorrow I go see an Infectious Disease Specialist. Not the type of doctor a person ever wants to go see/admit seeing. For me, though, it is something I’ve been working towards for ten months now, something I’m actually looking forward to, because it means we can get this treatment show on the road. For you, my yet to materialize audience, I plan on writing about the process of diagnosis; seeking treatment; and, the step I am at presently on this journey, starting and experiencing treatment. I’ll give you a blow-by-blow of it all. I might even pretty the site up a bit. Right now it is late and I’m tired, so I’ll have to backtrack for you tomorrow, but there are a few things I want you to know:

Hepatitis C is not a death sentence. This disease moves very slowly; it kills only a small percentage of people who have it, and new treatments are available right now, with more in the works.

Hepatitis C is difficult to transmit. To infect another person, blood to blood contact must occur. This means that they cannot get this from eating after you (unless maybe you have a bloody sore in your mouth, use your fork, and then proceed to stab the other person with the fork. I don’t recommend doing this).

Try not to worry too much about your loved ones. This was one of my main concerns, if not THE main concern, when I first tested positive. My hepatologist told me that in all his years of providing treatment, he had never seen the sexual transmission of the disease occur from one partner to the next.  That doesn’t mean it never happens; just that it is rare. Also, transmission from a mother to a child is only around five percent. If you had blood transfusions prior to 1992 (like me) you may have contracted hep c that way. IV drug use is probably the most common way people get HCV. Fact of the matter is, it doesn’t matter how you got it. No one deserves it.

You’ll need to tell someone eventually, but that doesn’t have to happen right away. Take some time to collect your thoughts and get informed. A great resource is http://www.hcvsupport.org. Go there, and soon!

Don’t worry, my adoring public. I’ll be back tomorrow with fun facts on what you need to do when you find out you are diagnosed. And I’ll let you know what the new doc says. Nite!