Thank you for your kind words and your prayer. My strength in getting through these many many months of challenges comes from not only within but also from seeing how others have handled thier fights. There are so many amazing people here and eveyone's battles challenges us individually. Having a positive attitude and looking at the bright side is so much of the battle. When my hemoglobin dropped and stayed there I knew it was going to be a LONG rough ride.......and now that I'm only 4 weeks from the end I can say I wouldn't have traded one moment of it. I feel so much stronger from knowing I handled the challenges even though the road was rough. I look forward to being "me" again someday soon. I will never take red blood cells for granted again in my life!
Thank you NYgirl for your genuine empathy and your prayer. It meant a great deal to me.
I hope this finds YOU well.
Scott
I saw an article in my paper that discussed young teens who are too fat who now are at stage 3/4 with no hep C. Keep your weight down ...cheers
Thats why.....I have all the healthy stuff,and my diet has been good for the last few years but now I cant face the green stuff either allthough I can do fruit...maybe because that has Fractose in it? well done for hanging in there, Im on week 5 of 24.
..... by chance I had a CBC on Wed followed by another on Fri and my hgb dropped from 10.3 to 9.4. Go figure. I'm on 40,000 units of procrit, and betting I'll be jumping to 60,000 when my doc gets ahold of me tomorrow.
I feel OK. Not great, of course, but OK. Dutch-boy says he's at 7.3 - I don't get the impression my Doc would go that low w/o reducing riba. Is there an abosolute cut-off followed by most protocols? "How low will you go"?
OUch 7.3 that has to hurt SO MUCH! I know that my 9 was killing me and that is so much LOWER!
You aren't responding to Epogen or Procrit?
I am saying a prayer for you right now I hope you don't mind...I have to say I just don't know how you can function on a 7.3 and my heart just bleeds for you.
Dutch,
It sure has been quite a ride, Scott ! So glad that you're still hanging in there, with your hgb in the basement and still walking the track. You are a hearty lot. I wish you all the best as you near the finish.
I'm taking my 40th shot (boy that number sounds good) this Wednesday and current goal is to treat between 42 and 54 weeks depending on how I (and my hgb) holds up. After 42 weeks I may taper down the peg and/or up the riba, again depending on how I feel and what the bloodwork says.
As to your friend, you've gotten a lot of good suggestions but based on experience (don't do as I do, do as I say :) ) I caution you against too agressive self treatment unless you get some doctors on board who understand the dynamics of off-road therapy. So, a second or third opinion from a hepatologist might be in order at this point.
And as Coug says, he did get the two-log drop -- and since most of us don't get the 4-week PCR it's hard to say how many people drop fast and then slow for a while. The next one or two PCR's should tell the story but he doesn't have a lot of time to wait as the goal now should be to clear by at least week 24.
Regarding increasing the riba -- again, a very legitimate strategy but with risks unless the docs really know what they are doing and are willing to support him minimally with Procrit, preferably prophylactically.
The other thing to think about is how agressive does your friend really want to get. More drugs, more tx time, means more sides and more potential long-term problems. Unfortunately, without a biopsy your friend is somewhat in the dark regarding the risk/reward equation.
If he was a stage 3 or 4, getting very agressive makes more sense than if a stage 0 or 1. Is there any way he can get a Fibroscan test? And what about his pre-tx blood markers like alt, ast, platelets and INR? And his ultrasound. Not as good as a biopsy but a good clinician should be able to make some sort of evaluation. Another reason for a possible second opinion.
Chris,
By "riba absorption issues" I simply meant that some studies suggest ribavirin is absorbed better in the presence of a higher-fat meal. There is a test for this but not available to my knowledge in this country except for certain research labs. In Europe, they have actually measured serum riba levels for certain trials with a special blood test.
-- Jim
What exactly do you mean by "riba absorption issues"? Is that something you're being measured for?
I'm so glad to be posting a little again and so happy to see you here. I've had a rough couple of months suffering from a non-negotiable stuck 7.3 hemoglobin which has caused alot of other issues and complexities. Still hanging in there emotioanlly and still walking the track when it isn't raining. I've been fighting alot of eye problems (migraine aura which distorts and blocks vision temporarily) from the anemia, and also have been fighting bad boughts of infections from the low ANC, strange body pains, numb hands and arms, white and cold as a ghost(normally olive skin) etc.....the list is long and very boring at this point! All this is tolerable however as I'm week 44 of 48!!! My spirits are in good shape and I remain optimistic all my sides (of which I think I've had them all at this point!) will dissipate when this ends.
For the taste bud issue!!!!! I completely understand. Since about week 14 nothing tasted normal to me...my cravings completely changed.....and the healthiest foods taste like metal to me. Green veggies are like eating rust right now and I've also lost 27 lbs! Doctor not happy about that fact but when you loose your appetite it makes it hard to keep the weight on. I have heard many times over our taste buds will get back to normal and hopefully we can once again cut back on these high fat foods which presently taste better and get those healthy foods back on track with TASTE!
I've been thinking of you as I know you are heading down the final path as I am....we have had quite a ride haven't we but it will all be worth it when we find out 6 mos post that we are SVR!
Best to you jmjm, Scott
Gee;
You think that the docs would've figured that one out already! If you eat lots of fats you may become
1) obese
2) or have coronary problems
3) or have fatty liver disease
DUH! I GOT TO GET A RESEARCH GRANT!
smiles
br007