The Telaprevir is looking good, so make sure you look after yourself until then!
As Brendan has siad, you need regular check ups to keep an eye on things, so don't lose the momentum.
Wishing you all the best
Love Steff xx
ty said
Jan 13, 2011
Hi Tim, Good luck on the future tests. I'm thinking of you, ty
BJ said
Jan 13, 2011
Gidday Tim,
I guess it's unfortunate getting a genome 1, but then again waiting for the telaprevir to lob should bring the treatment time down and chances of SVR through the roof, as a trade-off. When the cirrhosis was determined by ultrasound, was what evidence that indicated it mentioned, and given the physicians apparent wish not to use a biopsy, was it a high resolution ultrasound ?
You did say you were chasing your viral load (vl) when you saw the doc, did he have that or is that still to come ?
Early to bed and club sodas are one thing but complacency because you've probably had it for years, is not the way to go about this mate. You'll need regular checks by your doc or GP, and so you don't start experiencing the displeasure of hepatitis on the liver, a sqeaky clean diet and lifestyle. No time like yesterday for getting in tip top shape for tx whenever it is that the telaprevir is released.
Keep that good attitude going and back it up with a good preparation and you are gonna' knock this virus on it's arse when you get started.
Cheers,
Brendan.
Aaron said
Jan 12, 2011
Good luck
James10500 said
Jan 12, 2011
Hang in there. Waiting can be stressful but waiting for Tela seems well worth it !
Best,
James
hrsetrdr said
Jan 12, 2011
This morning I met with my GI doctor and now have a better idea of where I stand, and what's in store for the future. For starters, I'm genotype 1- not what I had hoped for, but not unexpected. My ultrasound revealed some evidence of cirrhosis, but the doctor didn't feel that a biopsy would yield significant information that would be valuable enough to risk the possible complications. Sometime in the next 90 days I'll be having a endoscopy(oh boy- ) to check the blood vessels in my esophagus, etc. Friday I'll get my vaccination for hep A, i won't need one for hep B since I had gotten vaccinated back in the '90s.
As for treatment, I'll be waiting until telaprevir comes available later on this year. Until then, I'll just be sitting tight & biding my time, with monitoring periodically. I am in no hurry, I'm not having any real symptoms, I've likely had hep C for decades and just would rather wait until the best possible treatment is available.
hrsetrdr said
Dec 31, 2010
Thanks James!
ty wrote:
Hi Tim, Good luck on that next meeting. I too went to my HMO's initial meeting after my Doc found that I had Hep C during the course of a regular physical. I wasn't sick, but I decided I would go because he looked so worried. The second meeting with the Gastro to explain my genotype and viral load was much more informative for me. She convinced me to do the Tx, but it took me a few more years to actually start, because of other health issues.
I'm tired of treatment and sick of the side effects, but in the last two days I've met two people my age who have Hep C with liver failure and can't get any treatment because they don't have health insurance. Hearing their situations made me count my blessings. So my advice is go to that meeting with every question you have written down and take lots of notes. Take care, ty
Ty,
Yes, it's amasing how adversity has a way of revealing one's "good" fortune, in comparison to those that are worse off. For me, this liver situation is a real 'incentive' to take care of my body, like it's never been taken care of before.
For New Year's celebration- it will be either a club soda with lime, and bedtime around 9.
Tim
Cinnamon Girl said
Dec 31, 2010
Good luck Tim with your next appt and I hope you get all the info you need. You`ll probably feel a lot calmer and less worried when you know exactly what you`re dealing with. The unknown is always a worry. Yes, tx is hard but the alternatives are much worse and it is doable with a bit of commitment and determination, and a little support of course.
Ty, those poor people with no health insurance really brings it home how lucky we are to have this opportunity to get our health and our lives back.
Love from Jill xx
ty said
Dec 31, 2010
Hi Tim, Good luck on that next meeting. I too went to my HMO's initial meeting after my Doc found that I had Hep C during the course of a regular physical. I wasn't sick, but I decided I would go because he looked so worried. The second meeting with the Gastro to explain my genotype and viral load was much more informative for me. She convinced me to do the Tx, but it took me a few more years to actually start, because of other health issues.
I'm tired of treatment and sick of the side effects, but in the last two days I've met two people my age who have Hep C with liver failure and can't get any treatment because they don't have health insurance. Hearing their situations made me count my blessings. So my advice is go to that meeting with every question you have written down and take lots of notes. Take care, ty
James10500 said
Dec 31, 2010
Tim-
Best of luck to you on the 12th. May your liver be w/o much damage and easy to treat.
hrsetrdr said
Dec 31, 2010
I'm looking forward to the appointment scheduled for Jan, 12th, I foresee having a better understanding of my health status, and direction for treatment.
BJ said
Dec 27, 2010
Gidday Tim,
I guess I'm not into sugar-coating anything to do with this virus, partly 'cause I s'pose I've seen the beginning of what the virus does to you and have had a bit of a grim time on tx, but with that you should understand that sadly/stupidly I drank heavily almost to the day I started tx which certainly only increased the effect of the virus and I have an unfortunate disposition with interferon, which has made tx more difficult for me.
Having said that, I've seen enough of the virus to say I'd do tx again if this tx failed without blinking, because it is miserable and a one way trip. But that's negative **** and I'm not faced with that problem. My problem with interferon is at normal doses it chews up my neutrophils too much amongst other things so I have to do tx at a lower dose for a longer period. Consequently tx has been pretty nasty for me but for most people it's not that bad, so please don't go by my anaylsis of tx, because it is extremely biased.
Another advantage with the tx you'll be doing is the inclusion of telaprevir can actually shorten tx time, as well as greatly enhancing your SVR (successful tx). This is all according to trial results of course, so I s'pose to appreciate those results you may want to look up those trials or perhaps just google it or look for Vertex, the company that makes it.
Needless to say talking about tx times and such things are a little premature for you until at least you know your genotype, and that along with your vl and more important of the two is possibly liver condition. Once you've got those 3 factors you'll be in a position to talk as they say, your options. Good luck with those mate, my fingers are crossed for a geno 2 or 3, really low vl and no liver damage:)
Cheers,
Brendan.
hrsetrdr said
Dec 26, 2010
Heather,
Thanks, hugs back @you!
Brendan,
Thanks for sharing your experiences, and words of encouragement. Tx sounds awful but going on without it...so much bleaker. I don't know if I'm experiencing actual symptoms, but since being diagnosed, my imagination is running wild.
I'm eager to get some solid information on where I stand, such as genotype, VL, how much liver damage. I do know that treatment will include telaprevir; good news, thought I'd have to wait awhile for it to get in the formulary. One big disappointment was discovering that using NSAIDS for aches & pains is totally out-of-the-question. But, Tylenol "can" be used? I thought that the FDA was trying to find a way to do away with Acetaminophen...because it seems to cause liver damage. ???
Oh well, someday soon...I'll know more.
BJ said
Dec 26, 2010
Gidday Tim,
Sounds like from the ordering of those tests they are moving quickly towards getting you started on a tx program. I'd say your presence at that 'class' was a good indicator to them that you are making an effort to get on the same page as it were, as they are, because the ordering of tests followed by an appointment to discuss options means they are certainly taking you seriously, and they are more than likely looking at getting you started on tx in the near future, well done.
Having just had my 2nd successive Christmas on tx pass, I was lying in bed yesterday (boxing day) more or less in recovery mode from overdoing it a bit on Chrissy day, and as much as it has been an inconvenience to my life amongst other things, I was just reflecting on how getting rid of the virus and back on with the rest of my life in much better shape, with a bit of a guarantee to boot, is the real reward we get out of doing tx.
It's very hard at times sticking to the tx and putting up with what it throws at us at times, and I guess it's easy to lose sight of why we are actually doing it at times. Before tx I had reached the stage where the virus had become an active part of my life and it was affecting everything I did. Just the thought of not having to be like that and to be able to get on with life positively planning for the future, is something a few years ago I thought would never happen.
Doing tx is hard, but the rewards at the other end are so worth the effort of what you are endevouring to now do, so I simply want to wish you every success in that journey. Remember, we (the forum) are here to help you to that end, I know I wouldn't have made it this far without this terrific forum, so don't hesitate to visit whenever you feel like it.
Cheers,
Brendan.
-- Edited by BJ on Sunday 26th of December 2010 05:33:10 PM
Minerva said
Dec 26, 2010
That's good news!! Will be good to know what your options are.
Hugs
Heather
xxx
hrsetrdr said
Dec 24, 2010
Several days ago I attended the "hep c' class, my HMO conducts. I'm glad I went, I already knew most of what was presented, but I wanted to "go with the program" and not be seen as a 'rebel'.
The PA ordered a pile of labs, and said that I'd be scheduled an appointment "soon", to be evaluated for treatment options.
The Telaprevir is looking good, so make sure you look after yourself until then!
As Brendan has siad, you need regular check ups to keep an eye on things, so don't lose the momentum.
Wishing you all the best
Love Steff xx
Gidday Tim,
I guess it's unfortunate getting a genome 1, but then again waiting for the telaprevir to lob should bring the treatment time down and chances of SVR through the roof, as a trade-off. When the cirrhosis was determined by ultrasound, was what evidence that indicated it mentioned, and given the physicians apparent wish not to use a biopsy, was it a high resolution ultrasound ?
You did say you were chasing your viral load (vl) when you saw the doc, did he have that or is that still to come ?
Early to bed and club sodas are one thing but complacency because you've probably had it for years, is not the way to go about this mate. You'll need regular checks by your doc or GP, and so you don't start experiencing the displeasure of hepatitis on the liver, a sqeaky clean diet and lifestyle. No time like yesterday for getting in tip top shape for tx whenever it is that the telaprevir is released.
Keep that good attitude going and back it up with a good preparation and you are gonna' knock this virus on it's arse when you get started.
Cheers,
Brendan.
Hang in there. Waiting can be stressful but waiting for Tela seems well worth it !
Best,
James
As for treatment, I'll be waiting until telaprevir comes available later on this year. Until then, I'll just be sitting tight & biding my time, with monitoring periodically. I am in no hurry, I'm not having any real symptoms, I've likely had hep C for decades and just would rather wait until the best possible treatment is available.
Ty, those poor people with no health insurance really brings it home how lucky we are to have this opportunity to get our health and our lives back.
Love from Jill xx
Hi Tim, Good luck on that next meeting. I too went to my HMO's initial meeting after my Doc found that I had Hep C during the course of a regular physical. I wasn't sick, but I decided I would go because he looked so worried. The second meeting with the Gastro to explain my genotype and viral load was much more informative for me. She convinced me to do the Tx, but it took me a few more years to actually start, because of other health issues.
I'm tired of treatment and sick of the side effects, but in the last two days I've met two people my age who have Hep C with liver failure and can't get any treatment because they don't have health insurance. Hearing their situations made me count my blessings. So my advice is go to that meeting with every question you have written down and take lots of notes. Take care, ty
Gidday Tim,
I guess I'm not into sugar-coating anything to do with this virus, partly 'cause I s'pose I've seen the beginning of what the virus does to you and have had a bit of a grim time on tx, but with that you should understand that sadly/stupidly I drank heavily almost to the day I started tx which certainly only increased the effect of the virus and I have an unfortunate disposition with interferon, which has made tx more difficult for me.
Having said that, I've seen enough of the virus to say I'd do tx again if this tx failed without blinking, because it is miserable and a one way trip. But that's negative **** and I'm not faced with that problem. My problem with interferon is at normal doses it chews up my neutrophils too much amongst other things so I have to do tx at a lower dose for a longer period. Consequently tx has been pretty nasty for me but for most people it's not that bad, so please don't go by my anaylsis of tx, because it is extremely biased.
Another advantage with the tx you'll be doing is the inclusion of telaprevir can actually shorten tx time, as well as greatly enhancing your SVR (successful tx). This is all according to trial results of course, so I s'pose to appreciate those results you may want to look up those trials or perhaps just google it or look for Vertex, the company that makes it.
Needless to say talking about tx times and such things are a little premature for you until at least you know your genotype, and that along with your vl and more important of the two is possibly liver condition. Once you've got those 3 factors you'll be in a position to talk as they say, your options. Good luck with those mate, my fingers are crossed for a geno 2 or 3, really low vl and no liver damage:)
Cheers,
Brendan.
Thanks, hugs back @you!
Brendan,
Thanks for sharing your experiences, and words of encouragement. Tx sounds awful but going on without it...so much bleaker. I don't know if I'm experiencing actual symptoms, but since being diagnosed, my imagination is running wild.
I'm eager to get some solid information on where I stand, such as genotype, VL, how much liver damage. I do know that treatment will include telaprevir; good news, thought I'd have to wait awhile for it to get in the formulary. One big disappointment was discovering that using NSAIDS for aches & pains is totally out-of-the-question. But, Tylenol "can" be used? I thought that the FDA was trying to find a way to do away with Acetaminophen...because it seems to cause liver damage. ??? Oh well, someday soon...I'll know more.
Gidday Tim,
Sounds like from the ordering of those tests they are moving quickly towards getting you started on a tx program. I'd say your presence at that 'class' was a good indicator to them that you are making an effort to get on the same page as it were, as they are, because the ordering of tests followed by an appointment to discuss options means they are certainly taking you seriously, and they are more than likely looking at getting you started on tx in the near future, well done.
Having just had my 2nd successive Christmas on tx pass, I was lying in bed yesterday (boxing day) more or less in recovery mode from overdoing it a bit on Chrissy day, and as much as it has been an inconvenience to my life amongst other things, I was just reflecting on how getting rid of the virus and back on with the rest of my life in much better shape, with a bit of a guarantee to boot, is the real reward we get out of doing tx.
It's very hard at times sticking to the tx and putting up with what it throws at us at times, and I guess it's easy to lose sight of why we are actually doing it at times. Before tx I had reached the stage where the virus had become an active part of my life and it was affecting everything I did. Just the thought of not having to be like that and to be able to get on with life positively planning for the future, is something a few years ago I thought would never happen.
Doing tx is hard, but the rewards at the other end are so worth the effort of what you are endevouring to now do, so I simply want to wish you every success in that journey. Remember, we (the forum) are here to help you to that end, I know I wouldn't have made it this far without this terrific forum, so don't hesitate to visit whenever you feel like it.
Cheers,
Brendan.
-- Edited by BJ on Sunday 26th of December 2010 05:33:10 PM
The PA ordered a pile of labs, and said that I'd be scheduled an appointment "soon", to be evaluated for treatment options.
Someday soon I'll know more....