Aa
Finishing Tx- Walking across or diving for the goal line
Good morning , I'll apologize now to anyone that would think this is a wasted thread , but I'm quite interested in this and I think others will find this interesting and possibly helpful.
There is an old addage in football about either crossing the goal line standing up , untethered or diving for the line , crawling and scraping your way across. All though it seems somehow more impressive to walk across , the points count no more or less either way .
There is a unlikely parallel in the treatment of HEP C. I dont know if I just remember the posts from people that had to scrape and crawl across , many actually not making it across at all , more than the posts from members that that walked across , did the dance and spiked the ball. I really dont know how I would search the archives for a question like this and I'm really hoping some of you members that have been here a while might have either personal or anecdotal knowledge of the ratio .
When I started treatment , I somehow had the idea that as the treatment progressed , the sx were going to get better. This this was the thing that I ,my family and friends held on to and said when we didn't know what else to say. This is obviously not the case and I am actually trying to prepair myself mentally for that long crawl.
Nothing is fair and there are no guarantees , but so many of you have been soooo strong through the entire ordeal only to struggle so fiercely at the end . Is there anything you can tell us that might help us deal with it.
There is an old addage in football about either crossing the goal line standing up , untethered or diving for the line , crawling and scraping your way across. All though it seems somehow more impressive to walk across , the points count no more or less either way .
There is a unlikely parallel in the treatment of HEP C. I dont know if I just remember the posts from people that had to scrape and crawl across , many actually not making it across at all , more than the posts from members that that walked across , did the dance and spiked the ball. I really dont know how I would search the archives for a question like this and I'm really hoping some of you members that have been here a while might have either personal or anecdotal knowledge of the ratio .
When I started treatment , I somehow had the idea that as the treatment progressed , the sx were going to get better. This this was the thing that I ,my family and friends held on to and said when we didn't know what else to say. This is obviously not the case and I am actually trying to prepair myself mentally for that long crawl.
Nothing is fair and there are no guarantees , but so many of you have been soooo strong through the entire ordeal only to struggle so fiercely at the end . Is there anything you can tell us that might help us deal with it.
Amirtracy,
You hang in there girl. Hopefully the doctor can coordinate something so you won't get the bills.
Kalio,,,, such a great story. Really makes you think
NYGirl, love the way you are so positive Hang in there.
Pat
You hang in there girl. Hopefully the doctor can coordinate something so you won't get the bills.
Kalio,,,, such a great story. Really makes you think
NYGirl, love the way you are so positive Hang in there.
Pat
Can you dr refer you to a hemo clinic so you can get the procrit. Or maybe just tell your doc that you can't afford to see a hemoand could he sign the form for procrit. There has to be a way to get you help on this.
Beagle
Beagle
I'll be swimming across that line. With four more weeks to go, I'm certainly sick and tired of feeling sick and tired. I renewed my gym membership. I'm taking it easy and don't expect to do the ninety laps per morning I did pre-tx, but the little bit I'm doing is helping tremendously with the joint/muscle aches, lack of circulation, tingling/loss of feeling in my hands and arms. I don't know if its fibromyalgia or arthritis from the tx -- all I know is it hurts and I got tired of it. I woke up for a bathroom run last night and knew that the aches I felt in my arms was from helping myself get back in shape, and not from the tx this time. A good feeling! I'm especially looking forward to my blurry eyesight clearing up.
I too thought that tx would get better as I went along. Surprise! I guess now that the tx cleared out all the little buggers (UND week 12), it has nothing left to attack but ME! I'm not ready to give in and be an old lady at 51. I do, however, have a new-found empathy for the truly old and infirm. This tx has taught me another lesson in patience.
Be well.
I too thought that tx would get better as I went along. Surprise! I guess now that the tx cleared out all the little buggers (UND week 12), it has nothing left to attack but ME! I'm not ready to give in and be an old lady at 51. I do, however, have a new-found empathy for the truly old and infirm. This tx has taught me another lesson in patience.
Be well.
That was so touching! Made me cry too. Had to shut my office door. Its things like this that that give me encourgement. I can only hope when my time is here one of you will drag me across that goal line.
beagle,
i'm in seminole county fla. and i'm on scherings commitment to care. I know i qualify for procrit too it's just the hepatamologist fees. my GI won't or can't prescribe it just refer me to someone else. even w/ free meds it gets expensive. lab work alone is burying me. anyways, i'm seeing my GI on the 23rd w/ another cbc on the 22nd. i'll just have to pay another doctor instead of another bill...you take care and thanks for the kind words. I'll make it somehow!!
kalio,
thanks to you too for the support and that was a great story! you've been very kind to me as well.
tracy
i'm in seminole county fla. and i'm on scherings commitment to care. I know i qualify for procrit too it's just the hepatamologist fees. my GI won't or can't prescribe it just refer me to someone else. even w/ free meds it gets expensive. lab work alone is burying me. anyways, i'm seeing my GI on the 23rd w/ another cbc on the 22nd. i'll just have to pay another doctor instead of another bill...you take care and thanks for the kind words. I'll make it somehow!!
kalio,
thanks to you too for the support and that was a great story! you've been very kind to me as well.
tracy
What I didn't see any report what what?
What exactly did it say?
God work gets SO in the way of my reading the forum! Don't they KNOW how important you are to me? ;)
It is such really crappy news about being a geno 2 or 3 isn't it...every time I see someone go YAY I am the good geno I CRINGE inside. Not until all of the regular old doctors at medical practices realize what is going on and the studies are really done will that OLD FASHION thinking go away.
It seems at the rate that you and I are going.....we'll be in here for a long, long time (but we'll finally beat it so haha! to the virus!) ;)
What exactly did it say?
God work gets SO in the way of my reading the forum! Don't they KNOW how important you are to me? ;)
It is such really crappy news about being a geno 2 or 3 isn't it...every time I see someone go YAY I am the good geno I CRINGE inside. Not until all of the regular old doctors at medical practices realize what is going on and the studies are really done will that OLD FASHION thinking go away.
It seems at the rate that you and I are going.....we'll be in here for a long, long time (but we'll finally beat it so haha! to the virus!) ;)
unfortunately cirrhosis is often stealthy and there is nothing to tip off the doc.nor would it have chaged my scenario. He did say had I chosen not to tx, he would have wanted one. I had platelets that were low, but just barely out of range and no other indicators. He did say cirrhosis is often a "suprise" to the patient. The he added "very often we dont find out until they are dead"
LOL
how's that for encouraging? He is a great guy, I have to give him credit for making me laugh out loud at such a moment of drama. None of us know from one day to the next if we will even wake up, HCV or not. I did communnity senior outreach for many years and they all used to always say when asked how are you?
"Any day I wake up and I am still alive is a good day."
I agree with them!
LOL
how's that for encouraging? He is a great guy, I have to give him credit for making me laugh out loud at such a moment of drama. None of us know from one day to the next if we will even wake up, HCV or not. I did communnity senior outreach for many years and they all used to always say when asked how are you?
"Any day I wake up and I am still alive is a good day."
I agree with them!
I think making it through 26 more weeks might be easier than the smoke quitting. But, you're motivated and determined. Good luck K1. I noticed that about your 'n' the other day. Time to treat yourself to a new wireless keyboard and mouse.
I am glad because I like to know the "real deal" though bummed it is so bad of course. He talked a lot about geno 3 being "much nastier" than previously thought, particularly in older women who contract it after 45.In my case, all those injected steroids for my back did't help either. He was pretty blase about the cirrhosis, he says " you have a little cirrhosis" I responded "is that like being a little bit pregnant?" to which he replied..."sort of" LOL
since all my liver function tests are within normal limits ( thank you thank you thank you oh great spirit)he isn't too concered and just wants me to stay on IFN if I can't clear it this time and do twice a year scans to watch out for HCC and view blood regularly. He is a pretty laid back and to the point guy, he said "put it this way, I dont need to send you for tran splant eval. and thats a good thing" and " I have patients in your shoes for decades with no changes" and "if we stop the viral assault we stop the progression" its hard to get these guys excited, they see much worse every day.
I guess the real issue is does the still living part of the liver function ok and so far mine is. He said "people can live long lives with part of their livers and die of something else at 90" but as we know it is a Bell curve, I just hope I am on the right side of the curve!
needless to say I have stopped smoking completely and not just the half assed "cutting down" I was doing before. He had told me not to try quitting on tx but heck, no time like the present. Just google smoking and cirrhosis for a good scare. Smoking is particularly bad with geno 3 he said, though bad for ANY geno he added.
We talked about doing a biopsy so we can get a stage/grade assesment but why go thru it, some of my worst fears have been realized. I don't really want one now but we will think about doing one if this round doesn't work. He still thinks I have a very good chance of clearing the virus but I don't. Maintenance IFN and keep that VL at 0 after I finish this round in March, that is my goal.
PS now my L works but the N is being touchy! this keyboard has had such a workout!
since all my liver function tests are within normal limits ( thank you thank you thank you oh great spirit)he isn't too concered and just wants me to stay on IFN if I can't clear it this time and do twice a year scans to watch out for HCC and view blood regularly. He is a pretty laid back and to the point guy, he said "put it this way, I dont need to send you for tran splant eval. and thats a good thing" and " I have patients in your shoes for decades with no changes" and "if we stop the viral assault we stop the progression" its hard to get these guys excited, they see much worse every day.
I guess the real issue is does the still living part of the liver function ok and so far mine is. He said "people can live long lives with part of their livers and die of something else at 90" but as we know it is a Bell curve, I just hope I am on the right side of the curve!
needless to say I have stopped smoking completely and not just the half assed "cutting down" I was doing before. He had told me not to try quitting on tx but heck, no time like the present. Just google smoking and cirrhosis for a good scare. Smoking is particularly bad with geno 3 he said, though bad for ANY geno he added.
We talked about doing a biopsy so we can get a stage/grade assesment but why go thru it, some of my worst fears have been realized. I don't really want one now but we will think about doing one if this round doesn't work. He still thinks I have a very good chance of clearing the virus but I don't. Maintenance IFN and keep that VL at 0 after I finish this round in March, that is my goal.
PS now my L works but the N is being touchy! this keyboard has had such a workout!
hey i am still hanging in there week 20 and sides back plus others issues on top, really want to cross the finish and put it behind me..been feelin crappy, emotional issues etc. hang in and hope all goes well,shelly..by the way the lithium made me sick!!!...dr is stopping med. see whats next..still staying on tx..hope to clear week 24..prayers 2 all :)
I was glad to read that, even after the results of the CT, that you would have taken the same approach that you are on now. What I wonder if the results of the CT will cause your doc to take a different approach with the next geno 3 he runs into. Maybe you covered this in a post I missed, but why would he finally agree to a CT but not a bx? And, are you now glad you convinced him?
That would be great to hook up. I'm Lindacal at sbcglobal dot net. I'm sure I can rally up some energy to visit. If I give you the silent treatment, just pay no attention! LOL
Timedog; My dad and I were both in advertising, so I know it can't be that easy. I guess the painting part is something I could never do at the moment. Here's a couple funny stories though:
My dad's desk was always a mess. i would try and organize it for him. While there I would talk on the phone. I wrote a friends number on one of his papers....it ended up on a billboard!
Since I was in 4th grade I used to correct his spelling (I can't even remember how now!) he was so bad at it. One day he was on the news because he wrote on one of those 'you will be prosecuted for...instead he wrote prostituted! Pretty funny.
Timedog; My dad and I were both in advertising, so I know it can't be that easy. I guess the painting part is something I could never do at the moment. Here's a couple funny stories though:
My dad's desk was always a mess. i would try and organize it for him. While there I would talk on the phone. I wrote a friends number on one of his papers....it ended up on a billboard!
Since I was in 4th grade I used to correct his spelling (I can't even remember how now!) he was so bad at it. One day he was on the news because he wrote on one of those 'you will be prosecuted for...instead he wrote prostituted! Pretty funny.
stupid brain,
I wanted to say 'I'd love to dance..
not live to dance..but either way was ok...
just really love dancing.
But anyway I can get across, just want to get
there.
I wanted to say 'I'd love to dance..
not live to dance..but either way was ok...
just really love dancing.
But anyway I can get across, just want to get
there.
Not a wasted thread at all.
A much needed topic as you can see.
Kalio, how dare you...just kidding, that beautiful
story, I'm at work crying, now I know they (my coworkers)
will never understand...WHO CARES anyway.
that is really touching...whew...need to walk away,
but that fatigue is too much..
I'd live to dance across the finish line...
but certainly feel the 'crawl' is what it will
be...hopefully on my on, but sometimes, I feel
I need to be pushed...so get ready...push comes to
shove...I'm gonna beat this thing and get over that
finish line.
A much needed topic as you can see.
Kalio, how dare you...just kidding, that beautiful
story, I'm at work crying, now I know they (my coworkers)
will never understand...WHO CARES anyway.
that is really touching...whew...need to walk away,
but that fatigue is too much..
I'd live to dance across the finish line...
but certainly feel the 'crawl' is what it will
be...hopefully on my on, but sometimes, I feel
I need to be pushed...so get ready...push comes to
shove...I'm gonna beat this thing and get over that
finish line.
I can't imagine being in your line of work on my best day. I am in advertising so I don't think anyones life will ever be in jepardy with any of decision I will ever have to make. But I am in a lot of meetings were I am expected to contribute and find myself staring off into space more then listening. Between work and family life sometimes it all feels like too much. My girlfriend is out of town for 3 weeks and I really don't mind because at least when I get home I don't have to do anything which is workiing for me right now. like 26 more weeks to go. go team go.
No space to answer you the other day...but yes, I am heading up north on Sept.4, you feel up to lunch or a cupa or something?
Guess we have to see how we feel that day! I kow you posted your addy somewhere but I can't seem to locate it now mine is my name and coxdotnet.
Guess we have to see how we feel that day! I kow you posted your addy somewhere but I can't seem to locate it now mine is my name and coxdotnet.
So sorry your having a rough time at tx. I'm also concerned you hae no ins. Is there a clinc near you where you pay on a sliding scale?
Here is a # for free procrit if you need it: 1-800-553-3851
Where do you live? So we can find someone to help you with free medical help.
Beagle
Here is a # for free procrit if you need it: 1-800-553-3851
Where do you live? So we can find someone to help you with free medical help.
Beagle
What a beautiful story!
52; At least you don't have to worry about becoming a bearded lady, like me! Maybe we can join the circus?
52; At least you don't have to worry about becoming a bearded lady, like me! Maybe we can join the circus?
Your story about the men was so touching, take care of yourself...Remember the scenery is beautiful.
Sorry to hear you are having such a hard time. When I get overwhelmed looking to the future tx I have left I try to look at how far I have come instead and you have come so far! You must really be struggling with that low Hgb. I hope the doc can help you feel better soon, will he give you Procrit? Hang in there and I hope tomorrow is better.
hi there mr.bailey. i sure hope you're doing well and post-tx life is wonderful for you.
i see my doc on the 23rd. i'm uninsured and he just refers me to a hematologist anyway. new consult, yadayada...i've been putting off paying another doctor but it's getting to the point where i'm going to have to or i'm not gonna make it thru tx. can't do 6 more months like this. :P
you take care and happy days to you.
tracy
i see my doc on the 23rd. i'm uninsured and he just refers me to a hematologist anyway. new consult, yadayada...i've been putting off paying another doctor but it's getting to the point where i'm going to have to or i'm not gonna make it thru tx. can't do 6 more months like this. :P
you take care and happy days to you.
tracy
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