Aa
2ND OPINIONS WORTH WEIGHT IN GOLD!!!!! aka YAY for Dr. J
An FYI on what a small change can do
After 46 weeks Dr. J. advised to drop me from 1,000 to 800 Riba. It was late enough in treatment to not be a real "dose reduction" which he is obviously completely against. But 1,000 was way too much for my weight (hee hee even though I fought like h3ll for that extra pill a day).
He was worried that I was on too much Epo at 40,000 x 2 a week and wants me off of it to avoid further autoimmune problems.
Well...on once a week Epo 40k with only 800 Riba I'm already up from 9.0 to 12.2.
I only went on once a week Epo two weeks ago (this is second week).
I really had NO idea that those little pills pack such a wallop!
YAY that was WORTH the $600 (still waiting to get reimbursed) to see the specialist because I don't think the GI would have picked up on it or changed it and I wouldn't probably have let him anyway to tell the truth.
I TOTALLY ADVISE anyone who is thinking of EXTENDING tx to TOTALLY get a good hep specialist, one who works on the STUDIES and knows about the JOURNALS and PROGRESS and get a 2nd opinion before you do so.
It's worth it's weight in GOLD.
Plus my Abs. Neuts are up to 1.9! hahahahaha 1.9!
SECOND OPINIONS RULE!
After 46 weeks Dr. J. advised to drop me from 1,000 to 800 Riba. It was late enough in treatment to not be a real "dose reduction" which he is obviously completely against. But 1,000 was way too much for my weight (hee hee even though I fought like h3ll for that extra pill a day).
He was worried that I was on too much Epo at 40,000 x 2 a week and wants me off of it to avoid further autoimmune problems.
Well...on once a week Epo 40k with only 800 Riba I'm already up from 9.0 to 12.2.
I only went on once a week Epo two weeks ago (this is second week).
I really had NO idea that those little pills pack such a wallop!
YAY that was WORTH the $600 (still waiting to get reimbursed) to see the specialist because I don't think the GI would have picked up on it or changed it and I wouldn't probably have let him anyway to tell the truth.
I TOTALLY ADVISE anyone who is thinking of EXTENDING tx to TOTALLY get a good hep specialist, one who works on the STUDIES and knows about the JOURNALS and PROGRESS and get a 2nd opinion before you do so.
It's worth it's weight in GOLD.
Plus my Abs. Neuts are up to 1.9! hahahahaha 1.9!
SECOND OPINIONS RULE!
2nd opinions are definately worth there weight in gold....I was under the care of a PA, that because of my moderate fibrosis and young age, wanted me to do Maintenance tx after completeion of my 48 weeks. She was going off findings from the HALT-C trials.. I was set to do it, as I wanted to have the best chances at SVR.
But of course, I went for a 2nd opinion..That is when I found myself under the care of Dr Schiff. He looked at my labs, my history, and at week 42 pretty much gauranteed me an SVR.. Told me to stop meds at week 48, and wipe my hands of HCV forever. He seemed to right, as I'm still undetectable, and my liver has improved dramatically...
But of course, I went for a 2nd opinion..That is when I found myself under the care of Dr Schiff. He looked at my labs, my history, and at week 42 pretty much gauranteed me an SVR.. Told me to stop meds at week 48, and wipe my hands of HCV forever. He seemed to right, as I'm still undetectable, and my liver has improved dramatically...
How are things going post? Are you getting more energy? Are there lingering issues? Hope not, I hope you are feeling better each day.
The fact that you know and understand that particular lesson already - will help you SO VERY MUCH!
There is a woman here who can't stand her doctor, the meds aren't working etc. etc but she is too afraid to say anything to him and i'm like then why are you bothering to even GO?
I really think it's our responsibility to know what is what with our bodies cause even the best doctor won't be able to help you with something if you don't tell him about it cause you don't know, right?
No matter what tx you end up doing - you are going to do great, you are on theright road mentally and smart enough to be learning as much as you can and THAT will be your biggest weapon against the hep (except your grandchild will be a bigger one!)
So you see, you can't NOT win this fight! :)
There is a woman here who can't stand her doctor, the meds aren't working etc. etc but she is too afraid to say anything to him and i'm like then why are you bothering to even GO?
I really think it's our responsibility to know what is what with our bodies cause even the best doctor won't be able to help you with something if you don't tell him about it cause you don't know, right?
No matter what tx you end up doing - you are going to do great, you are on theright road mentally and smart enough to be learning as much as you can and THAT will be your biggest weapon against the hep (except your grandchild will be a bigger one!)
So you see, you can't NOT win this fight! :)
I highly recommend the outside 2nd expert opinion especially when one is closely available and/or treatment issues get complicated which seems to be the case more times than not. I had four "2nd" opinions :)
--------------
NY: that for a woman is considered "normal"
NY, glad you're hgb is up and you're feeling better but in all due respect to Dr. J, not sure I'd consider you "normal". LOL.
All the best.
-- Jim
--------------
NY: that for a woman is considered "normal"
NY, glad you're hgb is up and you're feeling better but in all due respect to Dr. J, not sure I'd consider you "normal". LOL.
All the best.
-- Jim
Hey! Glad to hear your good news!! That's awesome!
I'm going for my 2nd opinion tomorrow. Woohoo!
When I got my med records from the dr I just dropped and called my new dr. asking if I should fax my records or just bring them w/me on Wed., they told me to fax them...that way "THE TEAM" could review and discuss them before I got there. I am already impressed with that alone!!! I am very excited about my new GI and medical staff. Just give me a week and I hope to FINALLY UNDERSTAND all of the details (ie; my medical stats) that I can keep track of.
My old dr gave me reports like this:
your platelet counts are critically low (no more details)
My liver biopsy report (back in July)- not too bad (no details)
My report after 1 week of treatment - he said my liver is functioning normally now (no more details)
When my blood platelets were down - I was told, don't cut yourself, or if you were to have a vessel break in your head, "it would be bad"
Ugh! No *@##! Duh!
I'm anxious for tomorrow!!! Can't wait!
Love you guys! You are a great support system!!!
E
I'm going for my 2nd opinion tomorrow. Woohoo!
When I got my med records from the dr I just dropped and called my new dr. asking if I should fax my records or just bring them w/me on Wed., they told me to fax them...that way "THE TEAM" could review and discuss them before I got there. I am already impressed with that alone!!! I am very excited about my new GI and medical staff. Just give me a week and I hope to FINALLY UNDERSTAND all of the details (ie; my medical stats) that I can keep track of.
My old dr gave me reports like this:
your platelet counts are critically low (no more details)
My liver biopsy report (back in July)- not too bad (no details)
My report after 1 week of treatment - he said my liver is functioning normally now (no more details)
When my blood platelets were down - I was told, don't cut yourself, or if you were to have a vessel break in your head, "it would be bad"
Ugh! No *@##! Duh!
I'm anxious for tomorrow!!! Can't wait!
Love you guys! You are a great support system!!!
E
OMG - You just have no idea how happy I am for you. At 12.2 you've got to have more energy - even if it's just a little!!!
That is so awesome. Good for you!!!
That is so awesome. Good for you!!!
You are gonna be SO HAPPY - when Dr. Js office wanted the records in advance so they could orgnize them into a report and the team could review with Dr. J I thought I dang near would pass OUT!
We get so used to being just knocked about and totally ignored that when someone treats us the way we SHOULD be treated (like we MATTER) we can't believe it!
And you know what - we DESERVE IT!
:) I'm so happy you are going for a 2nd. My GI is awesome but - just knowing that this guy was there to answer ANY question I had and EXPLAIN the results meants so much!
I understand that docs can't answer EVERY question and teach us everything - but - we shouldn't really have to learn off the internet on our own!
At least I don't think we should (but I am glad that I did!)
We get so used to being just knocked about and totally ignored that when someone treats us the way we SHOULD be treated (like we MATTER) we can't believe it!
And you know what - we DESERVE IT!
:) I'm so happy you are going for a 2nd. My GI is awesome but - just knowing that this guy was there to answer ANY question I had and EXPLAIN the results meants so much!
I understand that docs can't answer EVERY question and teach us everything - but - we shouldn't really have to learn off the internet on our own!
At least I don't think we should (but I am glad that I did!)
I agree with you 100%!! And yes, we ARE worth it!
CHEERS!
*Klinking our glasses of icewater*
E
CHEERS!
*Klinking our glasses of icewater*
E
You must feel like a new woman. HGB in the 12's is just something we usually dream about on tx. hooray
Glad to hear you're doing so well.
I'm back at work now. That synthroid sure made me feel better. I'm at 39wks. I can see the light at the end of tunnel! My Hgb has been staying in the 10's, and my ABS neutrophils are 1.4. So far so good. Feels good to post. Silv
I'm back at work now. That synthroid sure made me feel better. I'm at 39wks. I can see the light at the end of tunnel! My Hgb has been staying in the 10's, and my ABS neutrophils are 1.4. So far so good. Feels good to post. Silv
Man o' man things are really cookin' for you. I'm happy but not surprised to hear that you are working your way thru tx, able to deal with the sx, and that you've been fortunate to ask for help and get good people in your corner as a result. You deserve that.
Just about the time I got in touch with you, I was getting pretty frustrated because I wasn't getting the info I needed from any of the "pro's". That's when I went back to my PCP and got another gastro with notable experience in HCV, that I could go to in case it was necessary. It wasn't for extended tx, but it was something that I didn't feel comfortable with, that might have had an impact on tx. Fortunately I haven't had the need to do that, but it's there if I need it. With the type of thing that we have, I'd always want well informed opinions, wherever and whenever possible. You were one of those informed opinions for me. Thanx!
How is the thyroid situation doing? I'm up to 75 mcgs synthroid daily, along with all the other goodies
I hope your finger is healing up well. That didn't sound like a lot of fun. Well, like me, they gotta keep you away from those sharp objects!!!
Keep up the good work. Keep killing those little bugs... I hope everybody down your way is ready to watch The N.Y.Football Giants make history this season. Stay Well. Pauly
Just about the time I got in touch with you, I was getting pretty frustrated because I wasn't getting the info I needed from any of the "pro's". That's when I went back to my PCP and got another gastro with notable experience in HCV, that I could go to in case it was necessary. It wasn't for extended tx, but it was something that I didn't feel comfortable with, that might have had an impact on tx. Fortunately I haven't had the need to do that, but it's there if I need it. With the type of thing that we have, I'd always want well informed opinions, wherever and whenever possible. You were one of those informed opinions for me. Thanx!
How is the thyroid situation doing? I'm up to 75 mcgs synthroid daily, along with all the other goodies
I hope your finger is healing up well. That didn't sound like a lot of fun. Well, like me, they gotta keep you away from those sharp objects!!!
Keep up the good work. Keep killing those little bugs... I hope everybody down your way is ready to watch The N.Y.Football Giants make history this season. Stay Well. Pauly
I'm glad you're numbers are improving. I can tell you're feeling better by your post.
Way to go. You must feel pretty good right now. I am relly happy you found peace with that doctor. Proabably makes you feel a little more confident now.
You go girl.
How is the finger. Hope it is not bothering you too much. Nasty day that day.
Cajun
You go girl.
How is the finger. Hope it is not bothering you too much. Nasty day that day.
Cajun
So very happy for you, it's really nice to know that you are "in good hands" isn't it--and that somebody actually cares about your welfare and QOL. I guess I have some bad drs because I am always left with the feeling that they aren't getting enough and are just rushing me through for the 30$ co-pay.
Maybe the old saying is true that "you get what you pay for" because you sure paid --but it was totally worth it, I'm thinking.
I never got a chance to really thank you for those great products that you sent. Of course I emailed you but since your system was down I don't know whether you received it.
So again THANK YOU SO MUCH that was one of the most thoughtful things (especially since you don't even know me) that anyone has ever done.
You are SO brave and strong with your double genotype and all that you have been through. You never complain and you are so very encouraging and positive to the newbies, and always posting and helping.
YOU ARE MY IDOL
Maybe the old saying is true that "you get what you pay for" because you sure paid --but it was totally worth it, I'm thinking.
I never got a chance to really thank you for those great products that you sent. Of course I emailed you but since your system was down I don't know whether you received it.
So again THANK YOU SO MUCH that was one of the most thoughtful things (especially since you don't even know me) that anyone has ever done.
You are SO brave and strong with your double genotype and all that you have been through. You never complain and you are so very encouraging and positive to the newbies, and always posting and helping.
YOU ARE MY IDOL
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