Aa
Tallblonde
hi, hate to be so public in telling you this, but I have no other way really.....you and I have always been in "somewhat" the same boat in terms of how we've been dealing with our disease, anyway, I had a fibroscan today, like a few other members here....and I think it would be great for you to get one too, great relief off my mind and there are no big gauge needles to deal with! You probably know it's a scanning procedure, that gives you images of the entire liver...anyway, don't know if you do, but if so, Ina has my info and I could get you in touch with the good doctor, it's here in Los Angeles in a fairly beutiful setting...hope youre well...
Just taking a chance, don't even know if youre still reading...maybe so...
Just taking a chance, don't even know if youre still reading...maybe so...
Yes Kathy, I am not doing so good, but comparing it to last year at this time, I am doing much better.
Got to take my own advice and watch the trend, and the trend is definately for the better.
Do you remember when I wrote about a knife being jabbed into my liver...my gawd, I had so much liver pain post tx.
That has slowly subsided. A few days ago I started taking Zithromax for a sore throat. That stuff is pretty hard on the liver, and usually I would get a whole lot of additional liver pain...this time none.
And all those joint pains, I thought I would be a cripple. Had to walk with a cane, a truly miserable time.
You know I am not sure if the Fibrosure can be trusted. HR said to take it with a grain of salt. Some of what they are measuring, like ALT, and GGT can fluctuate for many unrelated reasons. In the future I only do the Fibrospect, and at some point the Fibroscan.
I havn't been reading consistently, but I gather post tx sides are tx you kindly, maybe I am wrong.
What's going through you mind in regards to tx?
Ina
Got to take my own advice and watch the trend, and the trend is definately for the better.
Do you remember when I wrote about a knife being jabbed into my liver...my gawd, I had so much liver pain post tx.
That has slowly subsided. A few days ago I started taking Zithromax for a sore throat. That stuff is pretty hard on the liver, and usually I would get a whole lot of additional liver pain...this time none.
And all those joint pains, I thought I would be a cripple. Had to walk with a cane, a truly miserable time.
You know I am not sure if the Fibrosure can be trusted. HR said to take it with a grain of salt. Some of what they are measuring, like ALT, and GGT can fluctuate for many unrelated reasons. In the future I only do the Fibrospect, and at some point the Fibroscan.
I havn't been reading consistently, but I gather post tx sides are tx you kindly, maybe I am wrong.
What's going through you mind in regards to tx?
Ina
I just caught your update... I wondered where you were at with TX... WoW... That's a LOT Of Riba.... I am Glad you are doing well... You certainly sound good... I hope this round will be the magic bullet for you... looks like you are off to a great start... Congratualations on the Undetectable status... & may your sx continue to be minimal for you!
Hang In There Bill
Ina..
Hey.. don't you call my friend FAT.... we're about the same size lately... LoL
Didn't realize you have been sick.... I hope you start feeling better soon! You'll finish the Z-Pack Today??? No??
;)
Hang In There Bill
Ina..
Hey.. don't you call my friend FAT.... we're about the same size lately... LoL
Didn't realize you have been sick.... I hope you start feeling better soon! You'll finish the Z-Pack Today??? No??
;)
No I never did catch that thread but reading here you seem to be doing oh so much better than right after tx. My jaw just dropped when you were talking about your fibrosure and fibrospect numbers. How remarkable. I will look for that post for additional thoughts. No - don't need the riba -- at least not for the present. You got that right -- time is not on my side. Maybe new doc will want another biopsy, but I doubt it.
You asked me how I was doing in another thread. I answered, but a little late. Can't find the thread, but I offered you my Riba. After reading your posts, you don't seem to be ready to tx again so soon, so I guess you don't need it.
Hi my "fat" friend, don't forget, time is not on your side.
Ina
Hi my "fat" friend, don't forget, time is not on your side.
Ina
Hi Susan
Zithromax always works quick, plus a Xanax over and above the Lexapro, plus 14 hours sleep, and I am as good as new.
Really glad to hear that the crisis is over and family and critters are all together.
Marathon gab fest,haha that's a good word for 3-9 hours
jabbering.
Yeah, time is always an issue, specially when you have to drive every day such distances as you....it also takes an open mind and a willing heart to understand, that not every one has been given the opportunity to live a life like Heidi...let's leave it like that.
Coming to your liver, you may want to do Fibrospect II as well.
Last year, approx. 6 month post tx, I ran Fibrosure and Fibrospect back to back.
Both tests claim to be fairly accurate at stage 1 and 4, yet there was a full stage difference between the two.
I knew because of my excellent "true" liver function tests, that I probably had regressed by 2 stages, but I was stunned to see Fibrosure at O fibrosis with no inflammation, and Fibrospect placing me at end stage 1.
I took the middle of the two, and figure I am O-1, which is fine for me, but may be of importance to you.
I agree with Kalio and foresee, that HR's scan is presently the best all around. I haven't had one, but wish I would have known about him before starting tx.
Don't forget to chart your Albumin, Bilirubin and platelets, and always watch the trend. I think I said it to you before, the trend is your friend.
Hyperthetically, if your Albumin is 4, which is considered a good number, but it is not so good when you compare it with an Albumin of 4.8 only 3 years prior. Same goes for platelets of course. They don't have to go down together, sometimes the platelets head down first, sometimes the Albumin, but ultimately they will catch up to each other. Pro-time is prolonged later in the game, and bilirubin also takes time to move up.
Doctors never bother to look at the numbers as long as they are in the normal range.
It took 15 years for my Albumin to fall from 4.8 to 3.4 (3.4 is considered cirrhosis), and not a single soul said a word.
The post tx sides are bummer, and I have been disappointed that it is taking so long to clear them.
Knowing what I know now, I would still do nothing different except prolong the weaning off from Peg.
I do consider myself one of the lucky ones. Many here suffered just as bad as I did during tx, look at southernboy with his congestive hearfailure, meremet with that awful rash, Jim and his reflux, SFbay girl with colitis, and all the others. Let's not forget people like Rev and his auto-immune hepatitis and that lady that developed Sarcoidosis...both didn't clear and can never tx with Interferon again, what a special kind of hell.
Oh no, I am a lucky dog...just need to remind myself of that every so often and get my arse of the pitty pot.
After all, I don't have to worry about Cryo suddenly becoming symptomatic, or any of the other extrahepatic manifestations rearing their ugly head. My liver can withstand potential chemotherapy (which I would of course take with a little Peg) to show those remnants who is boss around here.
I don't know if you read the board last year, but I had this little breast cancer scare (turned out nothing), and I said to the oncologist I would only take chemo with 45 mcg of peg, and she said that sounded like a reasonable approach.
Anyway, I gleaned this from HR, just wish his "from the board vacation" would come to an end.
Like our good doctor said...it's a good thing to look forward to old age without the worry of HepC.
Anyway, I have been seeing an acupuncturist for my back, and it has been helping. We are discussing tx for my post tx sides. He has about 20 post Interferon patients, none of them cleared, I am his only SVR, and he said all of them take between 1-3 years to get over the Interferon tx.
I tell Ivette you said hello. She has not been reading here for the past 2 month. She is doing fine, her brain has improved too. She is playing some mind games to improve her memory and concentration.
Take good care of your self, of hubby, the horse and goats, the duck, chickens, dogs and cat....oh yes, I remember...sure like to know how the horse and goats are doing.
Very best to you,
Ina
Zithromax always works quick, plus a Xanax over and above the Lexapro, plus 14 hours sleep, and I am as good as new.
Really glad to hear that the crisis is over and family and critters are all together.
Marathon gab fest,haha that's a good word for 3-9 hours
jabbering.
Yeah, time is always an issue, specially when you have to drive every day such distances as you....it also takes an open mind and a willing heart to understand, that not every one has been given the opportunity to live a life like Heidi...let's leave it like that.
Coming to your liver, you may want to do Fibrospect II as well.
Last year, approx. 6 month post tx, I ran Fibrosure and Fibrospect back to back.
Both tests claim to be fairly accurate at stage 1 and 4, yet there was a full stage difference between the two.
I knew because of my excellent "true" liver function tests, that I probably had regressed by 2 stages, but I was stunned to see Fibrosure at O fibrosis with no inflammation, and Fibrospect placing me at end stage 1.
I took the middle of the two, and figure I am O-1, which is fine for me, but may be of importance to you.
I agree with Kalio and foresee, that HR's scan is presently the best all around. I haven't had one, but wish I would have known about him before starting tx.
Don't forget to chart your Albumin, Bilirubin and platelets, and always watch the trend. I think I said it to you before, the trend is your friend.
Hyperthetically, if your Albumin is 4, which is considered a good number, but it is not so good when you compare it with an Albumin of 4.8 only 3 years prior. Same goes for platelets of course. They don't have to go down together, sometimes the platelets head down first, sometimes the Albumin, but ultimately they will catch up to each other. Pro-time is prolonged later in the game, and bilirubin also takes time to move up.
Doctors never bother to look at the numbers as long as they are in the normal range.
It took 15 years for my Albumin to fall from 4.8 to 3.4 (3.4 is considered cirrhosis), and not a single soul said a word.
The post tx sides are bummer, and I have been disappointed that it is taking so long to clear them.
Knowing what I know now, I would still do nothing different except prolong the weaning off from Peg.
I do consider myself one of the lucky ones. Many here suffered just as bad as I did during tx, look at southernboy with his congestive hearfailure, meremet with that awful rash, Jim and his reflux, SFbay girl with colitis, and all the others. Let's not forget people like Rev and his auto-immune hepatitis and that lady that developed Sarcoidosis...both didn't clear and can never tx with Interferon again, what a special kind of hell.
Oh no, I am a lucky dog...just need to remind myself of that every so often and get my arse of the pitty pot.
After all, I don't have to worry about Cryo suddenly becoming symptomatic, or any of the other extrahepatic manifestations rearing their ugly head. My liver can withstand potential chemotherapy (which I would of course take with a little Peg) to show those remnants who is boss around here.
I don't know if you read the board last year, but I had this little breast cancer scare (turned out nothing), and I said to the oncologist I would only take chemo with 45 mcg of peg, and she said that sounded like a reasonable approach.
Anyway, I gleaned this from HR, just wish his "from the board vacation" would come to an end.
Like our good doctor said...it's a good thing to look forward to old age without the worry of HepC.
Anyway, I have been seeing an acupuncturist for my back, and it has been helping. We are discussing tx for my post tx sides. He has about 20 post Interferon patients, none of them cleared, I am his only SVR, and he said all of them take between 1-3 years to get over the Interferon tx.
I tell Ivette you said hello. She has not been reading here for the past 2 month. She is doing fine, her brain has improved too. She is playing some mind games to improve her memory and concentration.
Take good care of your self, of hubby, the horse and goats, the duck, chickens, dogs and cat....oh yes, I remember...sure like to know how the horse and goats are doing.
Very best to you,
Ina
Opened the PDF cited in Adobe and then saved it to "text". Ran text through the "Google" translator. I'm trying to figure a way to post the entire article without having to break it down into a dozen threads due to MH's character limitation per post. Meanwhile, here's at least one paragraph pertinent to our discussion. Any typos, etc per "Google" translator.
"A negative test result meant however not in every case that no HCV-RNA in the serum more vorhan that is. It has itself with the introduction high sensitiver HCV-RNA test shown, that a significant percentage of Patient with
"A negative test result meant however not in every case that no HCV-RNA in the serum more vorhan that is. It has itself with the introduction high sensitiver HCV-RNA test shown, that a significant percentage of Patient with
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