Sick

Well yesterday's labs show Hgb tanking through the 9's again and ANC back down to 800 (.8). So it sounds like another round of Neupogen and perhaps yet another increase of Procrit.

I'm getting a bit concerned that at 100,000 a week now at how much farther I can go up.  All the pharmacists, even the specialty ones, I've talked to have not heard of anyone on as high a dosage that I'm on and unsure how high anyone can safely go.

After 10 months of this cr-p, I'm ready to just say the h-ll with it and throw in the towel, at least for now.  It's been so long since I've felt normal that I do not even recall what normal even feels like anymore.  About all I can vagurely recall is that I was able to do more than I can do now and not feel like one of the walking dead.

It got really bad yesterday when a Red Cross nurse took a step away from me when I pointed to HCV as being the reason I was only able to help and not donate any blood at their collection.

Sorry to unload, but I'm just sick and tired of being sick and tired and being treated like HCV is either no big deal or that I've got some type of contagious disease that can be caught simply by being to close to me.  Couple that with the uncertainty of whether all this tx/sx cr-p is even doing any good, not being able to know if it is for another 4 wks, signs of possible cirrhosis activity, and it just gets plain overwhelming at times.  Oh well, it's my lot I guess and most likely due to my own youthfull stupidity.

[mikesimon]

As simple as it sounds all you can do is put one foot in front of the other. I treated for a long time and I know exactly how you feel. I wish I could say that it will get better but it may not. But, we do endure and that's what you'll do I imagine. Try not to look too far down the road because it does get discouraging. Just take it one day at a time and you'll be okay - well, sort of okay. Good luck. Mike

[cuteus]

whatever your youthful stupidity made you do years ago is no excuse for these medical providers to be ignorant, they should know better.  It does seem like you are suffering too much with this tx and maybe maintenance is a better choice for you? Just keep the INF and forgo the riba, since HCV has not clear yet. Or did I miss the news in one of the million threads? Take a break from the anemia, it looks like it might be too hard on your blood cells and marrow!

My daughter wants to donate blood and one of the questions is so absurd, about hep c, I told her to answer NO, that no one in the house has symptomatic hep c. I even spoke with the nurse in the blood bank and asked her what they meant by the term, since hep c is asymptomatic in most, and she was not clear in her answer.  She said my daughter should answer yes, even if I am SVR for two years.  The whole section on hep c is so ridiculous, it made me want to scream at this RN for perpetuating the stupidity.

Their ignorance is not the result of our youth errors.

[mikesimon]

Just ignore everything I said because I was operating on the assumption that you've tested undetectable. I apologize for that. Mike

[52TELE]

Its still good advise...

[beamishboy]

there's no such thing as gravity- trx suks!!!.....

[sunspot]

Has your Dr thought of a transfusion? It may help you to complete yor=ur tx.

[mycoldfeet]

I was at Wal-Mart the other day, and my wife went to the life share bus to donate blood, they just said no thanks, cause she's married to a hepper, I felt like ****, she's been checked and negative. Just another log on that fire I guess, They should be glad my AD's work so well.

[Lady E]

Sorry to hear what you are going thru, Bud. I hope you can get it back under control real soon. ((Hugs)) for you. And be as it may, I guess we just have to swallow sometimes and ignore the ignorant. No matter what they say or do, we need to think about our health first. Best of luck to you.
E

[GrandOak]

The 100,000 U per week was reached during beginning of August in order to keep Ribavirin at 1400 mg wk dosage.  About 4 wks ago we split it from 100,000 U once a week into 50,000 U injections twice a week to try and maintain a more consistent level throughout the week.

I got the word late today that they do not want to increase Procrit dosage, probably since they figure I've only got 4 or so weeks to go before they yank me off tx (isn't great when they instill so much confidence), and I get to split the 100,000 U into 3 injects per week (two at 30,000 U and one at 40,000 U).

I told them that was fine with me as it is beginning to feel odd if I am not sitting down to do an injection, or two, or three, a night before hitting the sack.

Dang good think it's all SQ or I'ld really be looking like a serious junkie with all the tracs I'd have by now.

[GrandOak]

They get a bit cagey if ANC drops below 1.0 (1000) especially if WBC is below 2.0.  Since WBC is 1.6 I'm guessing it's another round of Neupogen for me this weekend (Oh joy! another weekend in bed, hope it's a rainy one).

[louisianawomen]

We're all behind you. And lifting you up more today.

[Mister beagle bailey]

Grandoaks, sorry to hear that your not feeling well.  The procrit didn't work to well on me but I was on 60,000 units every 5 days and I have Thalassemia.  I agree, that 100,000 units is a lot to take at one time.  I know in some rare cases they have given 80,000 units but only for a few shots.  I would talk to your dr as soon as you can about this as I feel that's way to much. Hope you feel better soon.

One more thing, your HGB is in the 9's and that is not that low to require 100,000 units of procrit.

Beagle

[Rastiss]

Hang in there. You will beat this.

[friole]

I would certainly be concerned about increasing the PRocrit any more.  IT was interesting to me that Dr. J. told nygirl to decrease her Riba so she could gradually reduce her Procrit.  Are you in any position to get a consult with a specialist?  Sunspot is right that maybe a transfusion is in order.

ANC sounds fine to me.  As long as you are not picking up infections .8 (800) should be fine.

frijole

[grace4us]

I want to just lift you up also.  I am sorry to hear you're not feeling well and if I were there I would give you a big hug.  You did a wonderful thing for the little girl starting the prayer vigil here on the board.  I will pray for you today and put in a prayer request at my church friday night.  

God Bless

[tipiwoman]

I too am sorry to hear you are having a hard time of it. I will also pray for you tonight along with the many others who've posted today. We are with you in spirit my friend. God Bless you GrandOak.

[Myown]

Very sorry to hear you're not feeling well. We seem to have many intercessors on forum. Trusting God with those and praying for your circumstance to change.