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


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…

 


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.


I feel like I’ve gotten away from the purpose of this blog which is to document what the side effects of this treatment are like.

My labs look like this:

CBC with differential platelet:

Currently at 8 for hemoglobin, which is a 2 point drop in two weeks.

Hematocrit is at 23.1, two percentage point drop in two days.

RBCs are 2.65, .10 point drop in two days

WBCs at 2.7, .2 point drop in two days

Absolute Neutrophils 1.1, .2 drop in two days

Complete Metabolic Panel (CMP):

only creatinine serum is high at 1.16  (normal range .57-1.00)

however, this combined with the fact that my potassium was very low until I started taking potassium horse pills makes me concerned that my kidneys are stressed. I’ll ask the doctor about it once I have one again….

Symptoms:

When my potassium was low, my muscles themselves were very very weak. Could not do a flight of stairs and dropped things frequently because of the tremors in my hands.

Low hemoglobin etc. is causing extreme pallor, constant bags under my eyes, racing heartbeat, shortness of breath and extreme fatigue. Also occasional lightheadedness. Very rarely my face will go numb.

I don’t know if it is the meds, the low labs, the stress or all three, but I find myself forgetting what I am supposed to be doing and trying hard to remember words that used to be a regular part of my vocabulary, or misusing words, something I NEVER used to do. My eyesight has gotten worse, a documented side effect of the interferon. All three meds have the potential to cause anemia but ribavirin is the main offender.

The nausea is mostly better now.

 

 

 

 


Not really. My amazing mother took the train four hours to come stay with me til this crap gets figured out, since I live alone.

However I feel like I don’t have a doctor at this point. I know I should have another CBC on Monday and at this point probably another one after that on Wednesday, but Dr. Miller has not ordered one and I’m sure he’s taking Monday off. Don’t know if he even plans to continue ordering labs for me or manage my care at all. Dr. Bacon’s nurse did not get back with me and neither did the receptionist, so I don’t know if I will be getting to see him sooner than the 12th even though that is what both the campus doctor and Dr. Miller were pushing for last week.

A bat got into my house last night. Called animal control and they never showed up…mom chased it around for two hours before it got worn out and she was able to catch it. I know it pooped in the kitchen and who knows where else. Besides the obvious ick factor I am not sure how worried I should be about the bat poop since my WBCs and absolute neutrophil count is low = I’m officially immunocompromised.

Then we came in from releasing the bat and the pipe under my kitchen sink broke. I love my life.

I’m sorry peeps I hope my posts can become more positive in the near future, but at this point my nerves are shot.


Dr. Bacon’s nurse won’t order the transfusions because she called Dr. Miller, who still insists that I don’t need them. Because Dr. Bacon has not yet seen me in person, the nurse doesn’t feel like she can order the transfusions and is thus trying to get in touch with Dr. Bacon via email to see what he wants her to do. Seeing as he is in Chile right now I don’t think that is going to happen. At this point I think Dr. Miller is being obstructionist because he thinks that once someone sees me in person, that person will tell me to stop riba which is apparently Dr. Miller’s goal. I think he just wants to be right. So fed up.

Completely exasperated that Dr. Miller, who has treated exactly ONE patient with the triple therapy (me!) is not taking the recommendation of Dr. Bacon, who is the second best hepatologist in the world and has been involved with triple therapy since clinical trials first started on telaprevir. He has written articles and made presentations on it. And guess what? Even though Dr. Miller is supposedly familiar with the Hep C world, he has never even heard of Dr. Bacon. Anyone who has done a bit of research on Hep C treatment knows who this guy is.


I emailed aforementioned expert in hep c late last night, thinking there was probably no way he would respond but that maybe, just maybe, he would…and he did!

I have to say I am giving myself a pat on the back…and a BIG thank you to all my pals at hcvsupport.org who were telling me the same things…between all of us we came up with the exact treatment plan that he is now recommending. I was correct in thinking I need a transfusion and procrit even though both the ER doc and my doc said no to it. Here is what my new doctor says:

“Yes I would agree that you should be started on procrit at 40000 IU per week and you should have a 2-3 unit blood transfusion today if at all possible  I am currently in Santiago Chile.  I will cc this to my nurse and ask her to arrange this for today.  Hopefully this will work as a stop gap measure for today. ”

Could have already had that 2-3 unit transfusion yesterday, but oh well….

You have to stand up for yourself. This was a very hard thing for me, because I like my treating doctor and we have developed a good rapport. It was upsetting to me to have to get to the point where I was being rude to him in order to get him to take me seriously about not stopping the riba.

Then the ER doctor acts like I’m being a drama queen, even though I KNOW I am more familiar with the effects of the ribavirin than he is. I told him, this drug has a 6 month half life, so even if I quit it today it will still continue to destroy my red blood cells. Also, if I quit it today according to telaprevir treatment protocols, I have to stop my entire treatment.  I said I know this is not your problem, but I am NOT quitting the ribavirin.

Oh and by the way, telaprevir was not even in the hospital’s computerized list of drugs, so that didn’t really give me much confidence that this doctor knew better than me…..

This scares me people. I should not have been allowed to get to this point. I had to say that to the doctor to get him to stop his spiel on “I’m the doctor and you can’t just read stuff off the internet and think that you have to follow it to the T, and you WILL stop the riba if no one will write the prescription for you.”

I said, I know that. What I am saying to you is that I don’t think it is fair that I was allowed to get this low and now my treatment is being jeopardized because of it. I wish we had started procrit two weeks ago back when my hgb was 9.9, and then maybe you would not be telling me to stop the riba now.

I am not looking forward to these transfusions. I am VERY squeamish of IVs, and I hate the thought of someone else’s blood being in me. This is how I got hep c to begin with.  I figure my odds of getting hit by lightning twice are pretty low though…..