AASLD: Records Show Deaths Associated with Hepatitis C Have Overtaken Deaths Caused by HIV

AASLD: Records Show Deaths Associated with Hepatitis C Have Overtaken Deaths Caused by HIV.

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 🙂

This Friday will be week 18

I can’t believe Friday will be the start of week 18! Annnd I got my 16 week blood draw back today when I saw the nurse practitioner, and I am still undetectable!!! I have to admit I was a little nervous about this one since it is the first viral load drawn since I finished the incivek portion of treatment. Now my next viral load will be drawn at week 24 when I’m doooone.

My potassium level has still managed to scrape into the normal range, and the nurse told me I could take all 40 mg at once instead of having to split it up and take 20 in the morning and 20 in the evening, so that will simplify things.

Bigger news–I have responded unusually quickly to the Procrit! It usually takes 4 weeks to see the effect of the shots, and not only did I see an effect at two weeks, I am actually already up as high as they want me to go (I jumped from 8.5 to 11.5). The NP was going to switch from shots every week to every other week, but I brought up the fact that we still haven’t upped my riba dose. So, I am going to go back up to 800 mg of riba and we are going to continue with the shots every week since increasing the riba will probably send the hemoglobin back down.
I was hoping that the hemoglobin being back up would make me less tired but so far it hasn’t. The NP said that this is probably because of the fact that my hemoglobin was so low for so long, my body is still compensating. Meh. At least I can up my riba, which was really the whole point of starting the procrit.

At this point I think I’ll make a list of side effects I have experienced so far, approximating a timeline:

Severe nausea, vomiting, chills–weeks 1-4 (intermittent nausea with decreasing frequency post week 4)
diarrhea (intermittent) week 1-present, decreased frequency after cessation of incivek
intermittent insomnia, week 1 to present
Anxiety, week 3-present
low grade fever (pretty much constant) week 1-present
Extremely dry skin-weeks 2-6
Hypersensitivity to scents, weeks 1-8 (smell of coffee made me nauseous)
Heightened sense of smell minus nausea, weeks 9-present
Altered body odor, weeks 4-present (controllable with clinical strength deoderant)
Flushed feeling–weeks 1-3
Extreme fatigue–intermittent, week 1- present, improved slightly on cessation of incivek
Loss of appetite–weeks 1-12
rash (appearance similar to contact dermatitis, itchy, covering limbs and trunk) weeks 1-2
hypokalemia (low potassium) weeks 6-present, potassium supplements sometimes effective
Hair loss–week 4, increasing rapidity by week 12, continuing to present
Decreased growth of body hair, week 3-present
Lightening of hair on head and body, including eyebrows, week 6-present
increased length of eyebrows, week 12-present
increased length of eyelashes, week 12-present (weird but not unheard of side effect of ribavirin)
Weight loss of 6 pounds in first week (yes even with all that fat), have not gained or lost weight since then.

As a reference point: Nurse Practitioner characterizes my treatment as “rough the entire time.” So, if you are reading this and considering treatment…I am not the “average.” However when comparing notes with others in the hep c community, my experience doesn’t seem as extreme as it could be. I haven’t been hospitalized, I have no secondary infections or liver problems, I avoided administration of IVs, and my nausea improved over the course of time. Many people say that you will only find the worst case scenarios online, because the people with the bad sides are the ones that get online and post about it. I agree with this to a certain extent, but I would like to point out that I started this blog weeks before I began treatment…maybe I just got “lucky.” So far it has all been worth it.

its ok

Made the trip home and back. Thank goodness for Amtrak. Granddad was awake when I was there and actually had a pretty good day. He is so pale and drawn, and is talking in whispers only. We still had a pretty long conversation, and he even ate a piece of pie while I was there (apparently radiation and chemo has left his raging sweet tooth unaffected, which is oddly comforting). When he wasn’t talking he would just sit back and beam at me.

I did ask him if he was scared. He said he doesn’t think about it much. He didn’t seem upset at all that I asked. I said I wished he didn’t have to go through all this, and he told me it’s just like having the flu all the time. Then we talked about football. And I told him a joke about St. Peter and Jesus and a crashing computer…I know this isn’t riveting reading but I feel like I need to document it somehow. We compared notes on side effects a little bit, we both had an aversion to coffee that passed after a few weeks. I think he actually enjoyed comparing experiences. The rest of the time we were just content to sit and hold hands. Got to spend some good time with Granny as well. She has lost a lot of weight (she must be in the negative numbers now…) but the aunts and uncles in town are keeping a close eye on her. She is being very strong.

Got to talk to Dad a bit about it too. I think he felt bad about talking to me, I know he worries about burdening me (He must get it from his dad). Honestly though it made me feel better to hear him get it out. If you can’t tell, I am big on getting things out in the open and discussing feelings. My family isn’t. However my “we hug now” policy I implemented several years ago seems to have worked pretty well so maybe I’ll eventually get them there 🙂
Came back and hosted a study group at my house. One of the girls took me up on my offer to let them practice injections on me. It’s tuesday so she did my procrit for me. She was so nervous but she did a great job! She was very afraid of hurting me. I hope being able to practice on a live person helped a bit. She said she might need to practice again, which would be great since I need outside motivation to keep my house clean (don’t really mind giving myself shots. I do mind dusting. The threat of potential embarrassment should help keep my coffee tables clear).
Been having insomnia issues again the past couple days so I had better try to wind down.

Are you scared?

So I’m realizing this blog is kind of a mishmash of my personal story combined with daily experiences and random facts about hep c. Now I’m going to veer in yet another direction (sorry) because I’m finding that this blog is kind of cathartic for me as a sort of “mind dump.” So if you are tiring of my digressions, read no further. Warning: No sunshine and butterflies ahead.

The thing is, my grandfather is dying. Most people have been through this at least once before they’ve reached my age (26) so I’m lucky in that I have kept all my grandparents this long. But I’m a little behind on how to handle losing someone this close. Granddad has had cancer for quite awhile now but it has just been this past month that he has really started to go downhill. He lives about five hours away, so I haven’t seen him since right before school started, and then he was still alert and talking, reading about taking up bonsai as a hobby, starting some azalea cuttings to train up, etc. Now apparently he is sleeping all but one or two hours out of 24. I’m afraid he won’t make it til Thanksgiving so I just booked my train ticket for next weekend. I have a long weekend from school so I figured I had better go.

What do you say when you know this might be goodbye? And is it stupid that I really want to ask him if he’s scared? I mean, what kind of question is that to ask a dying person? The answer seems like it would be an obvious yes, but for some reason I’m fixated on asking him this.

I called the other day and caught him when he was awake. His voice was very hoarse (Granny says he doesn’t want to eat or drink much these days) so he couldn’t talk for long, but he always insists he’s fine.

Me: “Granddad, how you doing?”
Granddad: “Oh I’m fine hon.”
Me: “Are you being ornery?”
Granddad: “I wouldn’t be fine if I wasn’t ornery!”

Granny says he doesn’t like it when she arranges for one of the kids to come over when she leaves the house “because he doesn’t need a babysitter!” So they take turns strategically “dropping by for coffee.”

So do we just keep on pretending everything is ok? Granny and Granddad are the most religious people I know, so maybe to them it really is ok and we don’t need to state the obvious here. I wonder if they’ve had the priest out for last rites yet. And I wonder what is wrong with me that I can’t stop thinking about whether anyone has asked him if he’s scared.

Well, I jinxed myself

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.

13 weeks down, 11 to go!

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).

Getting hooked up

Well, I guess the NP ran my numbers past Dr. Bacon and reconsidered her plan of action, because I got a call this morning from the NP’s nurse saying they want me to:

1.) Take 40 meq potassium in the morning and 20 in the evenings for the next three days (normally I do 20 morning, 20 evening).

2.) Come back in 1 week rather than two weeks for another CBC and CMP.

3.) Start procrit now rather than waiting for the effects of the telaprevir to wear off.

I’m very pleased by all this because it is exactly what I thought should be happening but was too tired to argue for during my office visit. I’m sure I probably won’t get the procrit for at least a week since they will have to deal with my insurance company on that, and then it will have to be mailed to me, but at least the ball is rolling. Maybe I won’t flunk out of nursing school due to fatigue after all! Yay!

Just to be clear: Procrit isn’t anything to mess around with, if you don’t absolutely need it you shouldn’t be on it. It has a “black box” label form the FDA, which is the strongest warning issued by that agency. From what I’ve read the side effects are more likely when physicians use it too aggressively. More is not better. Normal hgb is about 14, but procrit should only be used to attain levels of 12. Most insurance companies will not approve its use until your hgb hits 10, and in patients with kidney problems the threshold used by doctors is usually 8. My hemoglobin is currently at 8.4, so it is down a bit from last week. Lowest it has been documented at is 7.8. Hgb in the range of 5 is a critical level and will put you at risk for cardiac arrest.

I’m hoping that the longest I’ll be on it is three months. I am also ceasing all strictly unnecessary meds, like my birth control pills (has risk of clots, so does procrit) and my antihistamines. Stopped my citalopram but am continuing to take my clonazepam since anxiety seems to be more of a problem with me than depression at this point, and citalopram can prolong QT intervals in the heart. This is all something I’ve done on my own, not on the advice of my doctor, although I will definitely let him know which meds I’ve stopped taking.

That’s all for now, hopefully my next post will be to tell you my VL is UND…

 

Really. Tired.

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!

I’m not stupid or crazy!

I saw Dr. Bacon last Thursday. I was very impressed. It relieved me to no end to learn that

1.)  I’m not crazy (at least not for refusing to listen to my old doctor)

2.) I took the appropriate measures by dose reducing the ribavirin to 600 (lowest possible dose you can take and continue telaprevir)

My hgb was at 7.8 when I started the dose reduction, and approximately a week later it read at 8.8. Still not great, but since it is rising we are going to continue to keep my riba dose at 600 until I finish the telaprevir (in less than two weeks now!) and then take another CBC and viral load and raise the riba back to 800 if the hemoglobin has continued to rise. For now we are holding off on procrit. I would rather not have to take it if I can avoid it.

As I suspected the old doctor tried to make the new doc’s staff think I was crazy. He told them I had been refusing to dose reduce, which I don’t think was a result of confusion on his part since I had told him on three separate occasions that I was willing to dose reduce and had done so, but was NOT willing to cease altogether as he wanted me to. Didn’t take me long to set that straight since I have been keeping very specific records and my blood levels verified my documentation. Also mentioned that the old doctor had tried to get me to stop telaprevir due to vomiting and then re-start…implying just maybe he wasn’t as up on the protocol as he could be…and the nurse was horrified.

Mom is still here helping me but she is going home Thursday. So grateful for her.