Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 wrote: > > From: <lparker@...> > > Kirk & Lori wrote: > > > > Barb, > > Good for you for being proactive.Ê I have had two biopsy's. I was in > > and out of the hospital in 8 hours but I think it is wise to keep a 7 > > yr old in over night.Ê My experience has been pain (not unbearable but > > noticeable).ÊÊ Just be SURE the drs. give him a sedative and a slight > > pain reliever (many people like versed).Ê I've had one with and > > without sedatives and definitely go with.Ê I stayed in bed / on the > > couch the second day.Ê By the third day to about 7 days I was sore but > > not overly uncomfortable.Ê Both times the drs. said not to do anything > > strenuously (I play volleyball and they wouldn't allow it) because it > > can tear where the needle went in. > > > > Overall, it isn't too bad.Ê It can be very frightening the first time > > but I would go again if I new it would provide beneficial info. > > > > Take good care of your son and yourself.Ê If I can answer any specific > > questions, let me know. > > > > LJ > > > I am glad to hear your message LJ, as I did not want to say anything > negative, but was begining to think I was a wimp. I found the biopsies > to be very painful. I spent two days in hosptial, 3rd day on couch/bed > and site was tender for weeks after! First time I had it done had > nothing at all, second had novacaine at location. I didn't really think > it helped a whole lot. Next time I will be sedated! > > The ERCP on the other hand were a piece of cake, I went to sleep being > wheeled into room, woke up about 8 rs later! That's the kind of tests I > like! > > , PSC > Waiting > > ------------------------------------------------------------------------ > ONElist members are using Shared Files in great ways! > > Are you? If not, see our homepage for details. > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to -subscribeonelist > 2.) To UNsubscribe send to -unsubscribeonelist > 3.) Digest e-mail format send to -digestonelist > 4.) Normal e-mail format send to -normalonelist , My husband is waiting to have an ERCP, I will be happy to tell him you didn't mind it as he is very nervous. Also, how long have you had this disease? Do you have colitis? What medication are you on and are there any side effects? Will you need a liver transplant? Thank you in advance for answering. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Guys, All but one of the biopsies I had, were after my transplant. I was wondering? Does anybody know? Is there a differene in our experience - regarding pain after a biopsy, because a " new " liver responds differently? Or could it be the doctors' technique? , what is an ERCP, I've seen it mentioned here before, but I don't have a clue. P.S. Thanks for the explanation of PSC a while back, I'm learing so much from the group. --- Barbara Ann AIH transplant recipient On Sun, 16 May 1999 09:55:04 Patti McCormick wrote: >From: Patti McCormick <pmic@...> > > wrote: >> >> From: <lparker@...> >> >> Kirk & Lori wrote: >> > >> > Barb, >> > Good for you for being proactive.J I have had two biopsy's. I was in >> > and out of the hospital in 8 hours but I think it is wise to keep a 7 >> > yr old in over night.J My experience has been pain (not unbearable but >> > noticeable).JJ Just be SURE the drs. give him a sedative and a slight >> > pain reliever (many people like versed).J I've had one with and >> > without sedatives and definitely go with.J I stayed in bed / on the >> > couch the second day.J By the third day to about 7 days I was sore but >> > not overly uncomfortable.J Both times the drs. said not to do anything >> > strenuously (I play volleyball and they wouldn't allow it) because it >> > can tear where the needle went in. >> > >> > Overall, it isn't too bad.J It can be very frightening the first time >> > but I would go again if I new it would provide beneficial info. >> > >> > Take good care of your son and yourself.J If I can answer any specific >> > questions, let me know. >> > >> > LJ >> > >> I am glad to hear your message LJ, as I did not want to say anything >> negative, but was begining to think I was a wimp. I found the biopsies >> to be very painful. I spent two days in hosptial, 3rd day on couch/bed >> and site was tender for weeks after! First time I had it done had >> nothing at all, second had novacaine at location. I didn't really think >> it helped a whole lot. Next time I will be sedated! >> >> The ERCP on the other hand were a piece of cake, I went to sleep being >> wheeled into room, woke up about 8 rs later! That's the kind of tests I >> like! >> >> , PSC >> Waiting >> >> ------------------------------------------------------------------------ >> ONElist members are using Shared Files in great ways! >> >> Are you? If not, see our homepage for details. >> ------------------------------------------------------------------------ >> Please support the American Liver Foundation! >> >> 1.) To subscribe send e-mail to -subscribeonelist >> 2.) To UNsubscribe send to -unsubscribeonelist >> 3.) Digest e-mail format send to -digestonelist >> 4.) Normal e-mail format send to -normalonelist >, >My husband is waiting to have an ERCP, I will be happy to tell him you >didn't mind it as he is very nervous. Also, how long have you had this >disease? Do you have colitis? What medication are you on and are there >any side effects? Will you need a liver transplant? Thank you in >advance for answering. > >Patti > >------------------------------------------------------------------------ >Congratulations to " Trail Rider, " our latest ONElist of the Week. >http://www.ONElist.com >Visit our homepage and share with us how ONElist is changing YOUR life! >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Get your FREE Email at http://mailcity.lycos.com Get your PERSONALIZED START PAGE at http://my.lycos.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Barbara Ann, My biopsy was no problem, and I had no transplant. FYI! Tami (AIH) chollyfam@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Ooooops, I guess if i left my enzymes like they are (88) for too long I guess its possible i too could end up with fibrosis in the same time (2 years) you said that your enzymes were slightly elevated for about 2 years, Were you taking prednisone during those 2 years? Elena --- CREE8V1@... wrote: > From: CREE8V1@... > > Elena, > > My biopsy after an estimated two years of only > slightly elevated enzymes was > ranked grade 3 with fibrosis and bridging necrosis > (a sophisticated term for > cell death). > > Roxanne > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 I had my first biopsy on 5-15-98, and it come out as " Minimal effects " Meaning that my condition had not changed much and that no fibrosis had occured. I have elevated liver enzimes (the initial clue that I had Hep C). At the time I found out I had it, I was under a lot of stress and I was also passing kidney stones (Ouch!) and had one 4mm lodged next to my left kidney. Needless to say, They went in after it. Hep C , for me , makes me feel tired alot, sore at times, and generally easy to fatigue. That is something I have never before felt, and as active as I am, is hard for me to accept. This disease makes you feel helpless (as you all know) and to be a man and the bread winner of the family can have adverse effects on the mind. Because you can't do all the things you could do before Hep C. You just stay tired a lot. A lot of times I feel flue like. My Doctor is P. in Nashville Tn. @ Baptist hospital. He is one of the foremost Hep Dr's. in the country. He has me on no other medication at this time. I , however , am doing everything I can do to minimize the effects and damage caused by this disease. Like, drinking lots of water and juice everyday , eating good foods (No Junk) , Suppliments (Vitamins and such) and Herbs that support and re-vitalize the liver. I think everything one can do to counteract the effects is worth while because it WILL help minimize the effects and prolong any negative results. I know that many have more advanced cases , but still you can't give up the fight. My wife has had two (2) major cancer surgeries in the past 18 months. (colon and breast) we've been through a lot, but we're still fighting. And winning. May God bless us all in this fight . Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 =================================================> > Carolee: Do you mean your husband dreads the procedure itself? The liver > biopsy procedure for my husband was not a big deal. I suppose it has a lot > to do with the person who's doing it. What he did not like was laying > perfectly still afterwards for hours! =========================> Some people say it is painful, others don't. My husband is waiting to have one done toohe is to see the doctor on Monday to find out when...He has had kidney biopsies, so I guess it will be alot like that....he had to lay still for 4 hours then...and said it was a bit painful....only time will tell. pauline. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Hi and welcome, I feel much like you. No major symptoms, just fatigued easily and joint pains (knees). I am taking herbal supplements and watching my diet carefully. Haven't had a liver biopsy yet, but what little bloodwork I have had has all been normal (I was just diagnoised about 2 months ago). Waitng on the results of PCR. My dr. said if my biopsy showed no damage as of yet, he didn't see any reason for me to start the treatments. Won't take much to talk me out of that! HA! I'll just wait and see. He did say there are more promising treatments which should be available in the next few years with far fewer side effects. Most of this is still so new to me. It's hard to know what the right thing to do is sometimes. Well, anyhow, welcome. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Sandy and others on the list... MY dr said I just needed to eat healthy, stay away from alcohol or other chemicals that are matabolized the liver. My cholesteroal is a little as is my blood pressure ( 119 over 90...yesterday). Dr. says we'll just keep checking me over regularly and maybe I can wait till there are some more friendly treatments. I have to work tomorrow, so I am signing off. positive dreams Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 , That is great news. Your counts must be good enough that your dr. doesn't think anything drastic has be done immediately. My dr. also feels some better treatments will come around before long. Although it is impossible to say anything good about this virus, at least it is usually slow to progress which gives us time to consider our options. I will get my PCR results this week then probably get scheduled for a liver biopsy. Not sure how to feel about that. Any thoughts from cyberworld?? Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Sandy.. I am ultra new to this list. It doesn't seem to be very active. Did I just get to it in a lull or is this always the case???!! I noticed " PCR " in your post to . Could you please explain to me what this is?? Thanks... Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 Hi Merrill, Yes, the group has been in a lull for a few weeks now. Not sure why. I have been on it for several months now and until recently it has been extremely active. Wait and see. A PCR is a test that actually measures the amount of the virus in your system whereas the test to determine if you have C only measures whether or not you test positive to the Hep C antibodies. You could test positive for the antibodies and actually have cleared the virus, that is the case for about 15% of those who test positive. So if you have tested positive, you might want to ask that a PCR be done to see if you have the virus and how much of it is in your system. I tested positive and then had some blood test done that measure liver enzymes and liver functions. If you test high, then the disease is actively attacking the liver. Luckily, my enzymes and liver functions were all in normal range. Still waiting on the PCR test. My dr says if I am detectable (if the PCR does detect the virus in my system), then I will do a liver biopsy to see if and how much damage I have to my liver. If I have damage, then he recommends I go on the combo treatments. Are you familiar with this treatment? Let me know. Bye for now. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Dear : My hepatologist told me that the best way to check the liver was via a biopsy done with laparoscopy. He told me that they could better assess the damage that way because they could see it as well as biopsy the worst parts. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 I had laparoscopy biopsy - no overnight stay. Was home in about 4 hours or so. J >From: 55mia@... >Reply- onelist > onelist >Subject: Re: [ ] Re: Biopsy >Date: Sun, 26 Sep 1999 18:05:45 EDT >MIME-Version: 1.0 >From errors-165537-6978-shireen42 Sun Sep 26 15:05:51 1999 >Received: from [209.207.164.213] by hotmail.com (2.1) with ESMTP id >MHotMailB9B7E3BE0152D8219798D1CFA4D550F50; Sun Sep 26 15:05:51 1999 >Received: (qmail 31015 invoked by alias); 26 Sep 1999 22:05:19 -0000 >Received: (qmail 31010 invoked from network); 26 Sep 1999 22:05:19 -0000 >Received: from unknown (209.207.164.239) by pop3.onelist.com with QMQP; 26 >Sep 1999 22:05:19 -0000 >Received: from unknown (HELO imo17.mx.aol.com) (198.81.17.7) by >mta1.onelist.com with SMTP; 26 Sep 1999 22:05:46 -0000 >Received: from 55mia@... by imo17.mx.aol.com (mail_out_v22.4.) id >hWHLa11143 (7983) for < onelist>; Sun, 26 Sep 1999 >18:05:46 -0400 (EDT) >Message-ID: <5488affb.251ff2b9@...> >X-Mailer: AOL 4.0 for Windows 95 sub 214 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: 55mia@... > >From Kathy (Seattle area) > >My hepatologist told me that the best way to check the liver was via a >biopsy >done with laparoscopy. He told me that they could better assess the damage >that way because they could see it as well as biopsy the worst parts. > >********* > >Very interesting!! I have heard that that requires an overnight stay. I >guess they would have to have a good reason or the " insurance companies " >won't like it. Ooohh, I get so mad. Some days I feel like I have an >accountant treating me instead of the medical community. Okay, I'll get >off >my soapbox now. Hope I don't break a leg jumping off. > >Warmly, > > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 From Kathy (Seattle area) My hepatologist told me that the best way to check the liver was via a biopsy done with laparoscopy. He told me that they could better assess the damage that way because they could see it as well as biopsy the worst parts. ********* Very interesting!! I have heard that that requires an overnight stay. I guess they would have to have a good reason or the " insurance companies " won't like it. Ooohh, I get so mad. Some days I feel like I have an accountant treating me instead of the medical community. Okay, I'll get off my soapbox now. Hope I don't break a leg jumping off. Warmly, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Hi , The word " biopsy " hasn't entered it's ugly head into my medical scenario yet, though recently my new Internist asked if I'd been scheduled for a second one. At some point from some source, I read or heard that it might be expected that a second biopsy will be ordered after two years of treatment. I don't really remember the details, but I've been anxiously watching that 2 year mark since I was diagnosed positively in January 1998. However, though I'm supposedly in remission, my treatment has never been discontinued and never will be. On the plus side, my labs have been consistently benign for months. However, the insomnia that plagued me when I was first sick seems to be trying to return. Also, I'm noticing a recent discoloration of my urine. Since I have a history of blood in my urine (no one has ever been able to figure out why) that could be what's causing it. Tomorrow I'm having some fasting labs done to check for diabetes and I'll ask them to also let me leave a urine sample, just in case something is going on. I don't see the doctor tomorrow, just his nurse who will draw the blood. In a way, it's like living under a big, ugly cloud. I have a great umbrella but I never can be sure that it won't get blown away without warning. I guess that's what bothers all of us. We just don't know what to expect and neither does anyone else. Not even our doctors. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Hi Everyone In november I am having the second biopsy, it will be three + years. the main purpose is that we see how much the disease has progressed, and how long estimated time before liver failure. I've been told even though I've been in remission (test normal) it does not mean there is not still damage happening to the liver. Mt two cents, oh and I requested it, i was curious now I don't want to no. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 I am scheduled for a biopsy on Feb. 1, and as far I know the doctor said he will numb my side with a local and I will be very wide awake. No sedative..... no nothing! .... YIKES!! .... LOL I'll be all right and so will you. Leah Biopsy >From: " " <suejacks@...> > >Hello Everyone, > >I am curious to know if any one has had a transjugular biopsy and if you >could give me some insight as to what to expect. How long does it take, >awake or asleep, sedation or heaven forbid, none? > >Thanks, >Sue > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 I am scheduled for a biopsy on Feb. 1, and as far I know the doctor said he will numb my side with a local and I will be very wide awake. No sedative..... no nothing! .... YIKES!! .... LOL I'll be all right and so will you. Leah Biopsy >From: " " <suejacks@...> > >Hello Everyone, > >I am curious to know if any one has had a transjugular biopsy and if you >could give me some insight as to what to expect. How long does it take, >awake or asleep, sedation or heaven forbid, none? > >Thanks, >Sue > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Leah, Ask for a mild sedative or pain killer before they do the biopsy. I, along with alot of other people, experienced right shoulder pain after the needle was removed. The biopsy itself only took 5 minutes or less. The reason you're awake when it's performed is because you have to hold your breath when they take the microscopic piece of liver. Love, Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Doctor, I am thankful to your advise. Is that PEG.IFN would be better than IFN combo as available now.I am only hoping to reduce the side effects as adopting a better treatment. My expection of the new medicine to reach here may be by end of this year and I wanted to have the biopsy test done by knowing this. As the HCV is a slow progressive disease I was of the assumption to have the biopsy done after the medicine confirmation. Please advise.- Regards - Gyani. --- Subject: Re: What's high viral count? Date: Fri, 14 Apr 2000 20:19:10 +0530 I think it is wiser to have a liver biopsy and then decide if she needs treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Doctor, I am thankful to your advise. Is that PEG.IFN would be better than IFN combo as available now.I am only hoping to reduce the side effects as adopting a better treatment. My expection of the new medicine to reach here may be by end of this year and I wanted to have the biopsy test done by knowing this. As the HCV is a slow progressive disease I was of the assumption to have the biopsy done after the medicine confirmation. Please advise.- Regards - Gyani. --- Subject: Re: What's high viral count? Date: Fri, 14 Apr 2000 20:19:10 +0530 I think it is wiser to have a liver biopsy and then decide if she needs treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Peg.IFN may yet be a long way off, so have the biopsy now, then one can decide regarding treatment. Dr SCM Re: What's high viral count? > Date: Fri, 14 Apr 2000 20:19:10 +0530 > > I think it is wiser to have a liver biopsy and then decide if she needs > treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Peg.IFN may yet be a long way off, so have the biopsy now, then one can decide regarding treatment. Dr SCM Re: What's high viral count? > Date: Fri, 14 Apr 2000 20:19:10 +0530 > > I think it is wiser to have a liver biopsy and then decide if she needs > treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Dear Claudine: I agree that a biopsy should be everyone's own choice. But, to take some of what you mentioned, and twist it a little, if you are 1b, what difference does it make how much, if any, liver damage is done? Whether you have 10% left, or 10% destroyed, should not play on whether to treat. That 10% could quickly accelerate, especially since we have no idea what turns the virus on and off. There is also the issue that many GIs will not treat a patient if they are below a stage. But, if you treat early, you may avoid liver damage, or minimize it. While it is true that you could build a quasi species if you take the treatment and it does not work, there is nothing to say that a quasi species will not mutate by itself, with or without therapy. Also, like the rebetron combo, there is nothing to say that someone will respond to the Peg either. If you fail both treatments, and more quasi species develop, your only hope at that point is that the virus will turn itself off. Like any chronic, and potentially lethal disease, you are owed whatever therapy might work. You make the final decision! But, if you have 50% of your liver destroyed, and the statistics on use of the current therapies are known, shouldn't you be offered the option of therapy? If you refuse therapy or decide to wait, is always up to that individual. But, since there is nothing to say whether you will be the person that current treatment works on, no matter how small, what difference does it make on how much liver damage there is, or is not. If I tell you, you only have 20% of useful liver tissue left, and the alternative is to try something; wait; or just hope, with the alternative being you become so bad, if you can afford and are eligible for a transplant, you might live, should you take take the risk of a liver becoming available, or, try to stop the progression of the disease into what you still have left? In either case you may lose, or you may come out ahead. But, until you have exhausted all possible treatments, you may not even make it to the transplant list. Remember, only about 1 in 10 actually get a transplant, and the rest leave us. If I have 1 or 90% of my liver functioning, I would much rather give it a try to stop the virus, then just sit and wait until something better comes along, if ever. I realize that this is a depressing topic, but, none the less, it is a fact. None of us knows what will happen tomorrow, or anything else. While I might not personally go through some of mutilation that has been seen in cancer treatment, at least I might give it a try. If you respond, then the right decision was made. If you do not, did it buy extra time? qualify you for some research protocol?, or maybe the cure for you! To be a " devil's advocate " , you only have one liver, and, if the virus is going to destroy it, you elect whatever direction to take. The biopsy, almost like the genotype, is a research tool. It is not supposed, at least in the US, to be used as a criteria for a provider to offer, or hold therapy. Only the viral count is important. Even if your liver function tests are normal, if your viral count is elevating, at some point liver destruction is a given, if it is not stopped, and therefore probable death. So why add another criteria, that is not accepted as a basis for therapy or holding, to the problems already present. Every person should have the most information to make an informative decision. But, that information should be based on as much fact as we know it. Without therapy, the virus will probably do destruction, and can lead to death. With therapy, the same thing MAY happen, but it is not as certain. Who wants to become the guinea pig and try nothing, or something, both are unknowns. But, if you are part of the responders, then you give whatever portion of your liver the ability to regenerate, or the amount that is still functioning properly, the ability to take over what has been destroyed. Yes, you can die from the treatment making things worse, or get hit by a plane falling out of the sky. If you do nothing and wait, then you, again, may be allowing the virus that much more time to possibly cause damage. The biopsy may give you information, but, it is NOT, information that is supposed to be used by a provider to recommend therapy, or holding. It is similar to what our government did to the Blacks in the Carolinas with syphilis. Treatment was available, but, by using the color of someone's skin, it was withheld from many, and many progressed to death. If they were told, when they were severely infected that something may work to cure them, or at least may help them, but, may not cure them, wasn't it owed? For some it may have been too late, but for others it would have cured them. But, it was withheld, and most died a horrible death. This was all based on an arbitrary decision, by someone outside the stricken community. If they had suffered some brain damage, but, still had a chance of being cured, or being stabilized, what would each have done? I would guess we could probably predict their decisions. Some would have died anyway, but, if you were one of the responders, what decision then? A treatment was consistently withheld based on one criteria. That should not be allowed ever again, and by throwing in variables that do not effect whether treatment is offered, isn't this the same principal? Every day that goes by is one step closer to beating this. But, how many steps are needed is an unknown. Should someone with diabetes, or a heart condition be led to believe that just because they do not have a " perfect " body, they are not entitled to the therapy available? I know some of this is extreme, but, some of the facts are the same. Knowing if, and how much liver damage you may or may not have, is not a criteria for current therapy. Maybe in 10 years it will help to offer better statistics, but, every person should not be looked at as just a potential statistic. That is all the biopsy information actually offers us today. It is not a predictor or success or failure, and until it has been proven to definitely state it will hasten therapy, or interfere with it, it should not be a basis for deciding, or electing what is available at the moment. This is just my opinion, and I am not saying I am right or wrong. It is this unknown that I am concerned is being used to sway people towards or away from therapy. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Dear Claudine: I agree that a biopsy should be everyone's own choice. But, to take some of what you mentioned, and twist it a little, if you are 1b, what difference does it make how much, if any, liver damage is done? Whether you have 10% left, or 10% destroyed, should not play on whether to treat. That 10% could quickly accelerate, especially since we have no idea what turns the virus on and off. There is also the issue that many GIs will not treat a patient if they are below a stage. But, if you treat early, you may avoid liver damage, or minimize it. While it is true that you could build a quasi species if you take the treatment and it does not work, there is nothing to say that a quasi species will not mutate by itself, with or without therapy. Also, like the rebetron combo, there is nothing to say that someone will respond to the Peg either. If you fail both treatments, and more quasi species develop, your only hope at that point is that the virus will turn itself off. Like any chronic, and potentially lethal disease, you are owed whatever therapy might work. You make the final decision! But, if you have 50% of your liver destroyed, and the statistics on use of the current therapies are known, shouldn't you be offered the option of therapy? If you refuse therapy or decide to wait, is always up to that individual. But, since there is nothing to say whether you will be the person that current treatment works on, no matter how small, what difference does it make on how much liver damage there is, or is not. If I tell you, you only have 20% of useful liver tissue left, and the alternative is to try something; wait; or just hope, with the alternative being you become so bad, if you can afford and are eligible for a transplant, you might live, should you take take the risk of a liver becoming available, or, try to stop the progression of the disease into what you still have left? In either case you may lose, or you may come out ahead. But, until you have exhausted all possible treatments, you may not even make it to the transplant list. Remember, only about 1 in 10 actually get a transplant, and the rest leave us. If I have 1 or 90% of my liver functioning, I would much rather give it a try to stop the virus, then just sit and wait until something better comes along, if ever. I realize that this is a depressing topic, but, none the less, it is a fact. None of us knows what will happen tomorrow, or anything else. While I might not personally go through some of mutilation that has been seen in cancer treatment, at least I might give it a try. If you respond, then the right decision was made. If you do not, did it buy extra time? qualify you for some research protocol?, or maybe the cure for you! To be a " devil's advocate " , you only have one liver, and, if the virus is going to destroy it, you elect whatever direction to take. The biopsy, almost like the genotype, is a research tool. It is not supposed, at least in the US, to be used as a criteria for a provider to offer, or hold therapy. Only the viral count is important. Even if your liver function tests are normal, if your viral count is elevating, at some point liver destruction is a given, if it is not stopped, and therefore probable death. So why add another criteria, that is not accepted as a basis for therapy or holding, to the problems already present. Every person should have the most information to make an informative decision. But, that information should be based on as much fact as we know it. Without therapy, the virus will probably do destruction, and can lead to death. With therapy, the same thing MAY happen, but it is not as certain. Who wants to become the guinea pig and try nothing, or something, both are unknowns. But, if you are part of the responders, then you give whatever portion of your liver the ability to regenerate, or the amount that is still functioning properly, the ability to take over what has been destroyed. Yes, you can die from the treatment making things worse, or get hit by a plane falling out of the sky. If you do nothing and wait, then you, again, may be allowing the virus that much more time to possibly cause damage. The biopsy may give you information, but, it is NOT, information that is supposed to be used by a provider to recommend therapy, or holding. It is similar to what our government did to the Blacks in the Carolinas with syphilis. Treatment was available, but, by using the color of someone's skin, it was withheld from many, and many progressed to death. If they were told, when they were severely infected that something may work to cure them, or at least may help them, but, may not cure them, wasn't it owed? For some it may have been too late, but for others it would have cured them. But, it was withheld, and most died a horrible death. This was all based on an arbitrary decision, by someone outside the stricken community. If they had suffered some brain damage, but, still had a chance of being cured, or being stabilized, what would each have done? I would guess we could probably predict their decisions. Some would have died anyway, but, if you were one of the responders, what decision then? A treatment was consistently withheld based on one criteria. That should not be allowed ever again, and by throwing in variables that do not effect whether treatment is offered, isn't this the same principal? Every day that goes by is one step closer to beating this. But, how many steps are needed is an unknown. Should someone with diabetes, or a heart condition be led to believe that just because they do not have a " perfect " body, they are not entitled to the therapy available? I know some of this is extreme, but, some of the facts are the same. Knowing if, and how much liver damage you may or may not have, is not a criteria for current therapy. Maybe in 10 years it will help to offer better statistics, but, every person should not be looked at as just a potential statistic. That is all the biopsy information actually offers us today. It is not a predictor or success or failure, and until it has been proven to definitely state it will hasten therapy, or interfere with it, it should not be a basis for deciding, or electing what is available at the moment. This is just my opinion, and I am not saying I am right or wrong. It is this unknown that I am concerned is being used to sway people towards or away from therapy. Marty Quote Link to comment Share on other sites More sharing options...
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