Medical Forum / Diseases and Disorders / Hepatitis / April 2006
A post I made years ago
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nightcreature43@msn.com - 26 Apr 2006 06:04 GMT My God! I had no clue you guys still have that post. An explanation is in order here. That post I sent on 09-17-2003, and labeled "HepC: Who cares!" I posted right when I first realized how deadly this disease is. I was feeling nothing but anger and hate and took it out on everyone. And most of my rage was focused on HepC sites. I was still drinking and going through an 8-ball every night. It never occured to me that the sites were for people reaching out for help, and I'm on sites saying "Haha, I'm still partying my a.s off". I was a bastard. I have finally started repairing my life. No drugs, and only the occasional fall off the wagon which I think happens to most people. I know I pissed quite a few people off, But I am not the same person who sent those e-mails out 3 years ago.
Dwight - 26 Apr 2006 06:20 GMT > My God! I had no clue you guys still have that post. An explanation is > in order here. That post I sent on 09-17-2003, and labeled "HepC: Who [quoted text clipped - 8 lines] > know I pissed quite a few people off, But I am not the same person who > sent those e-mails out 3 years ago. Hey, I don't remember them, manbe the rest of us that were around don't remember then as well. So, Whatthca talkin about Willard?
Dwight
Paul - 26 Apr 2006 08:45 GMT On 25 Apr 2006 22:04:26 -0700, nightcreature43@msn.com, in message ID <1146027866.647306.240710@t31g2000cwb.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote:
>My God! I had no clue you guys still have that post. An explanation is >in order here. That post I sent on 09-17-2003, and labeled "HepC: Who [quoted text clipped - 8 lines] >know I pissed quite a few people off, But I am not the same person who >sent those e-mails out 3 years ago. Aah !! You mean the following one:-
"I've spent the last 2 months on the net, and am wondering if I'm the only person left who finds a diagnosis of HCV nothing more than trivial! If you're going to lecture me on the evils of alcohol and other substances, then I don't need for you to waste my time! I have no intention of giving up my lifestyle. If there are other people out there who share my view, then I'd love to hear from you. I'm sure I can't be the only person in the world that views HepC as nothing more than a casualty of too much partying; yet doesn't let it get in the way of their nightlife! I would just like to know that there's at least a few people who can relate. People don't freak when you tell them you have HepC. It's only when they find out you're not doing anything about it that they look at you as if you have three heads or snakes growing out of your head!"
It's OK, really. I haven't got loads of spies :-) I started using this newsgroup a few weeks before the above post and I've never deleted any of them from my hard drive. It was a simple matter to check any posts made on that date :-) . Funnily enough, I do vaguely remember it. It was shortly after hepatitis killed someone I cared about very much - hardly trivial. At that point, I had been diagnosed but had not had a biopsy. The biopsy eventually revealed that although I was still some years away from cirrhosis, my liver did have a fair bit of damage so I treated - succesfully as it turned out.
If posting that post above to usenet was the worst thing you did while using, you did a hell of a lot better than I did. I've been around long enough to know the major changes that usually happen with someone when they stop using. I'm unrecognisable from the person I once was as well.
Did you ever get around to having a biopsy as that's the only reliable way of seeing how much damage (if any) your liver has suffered?
nightcreature43@msn.com - 27 Apr 2006 04:10 GMT The latest lab work I can unearth shows HCV 1,390,000. AST 103, ALT 58. That bloodwork was done on December 23, 2003. I have another bloodwork that I believe was done in mid 2004, but can't find it. I'm hoping ceasing the alcohol and coke are enough for my liver to repair some of the damage I've done. I'm completely terrified about taking Inteferon after reading patient horror stories while they were on it. My medical doctor does bloodwork on me every six months to monitor my levels are. We've talked about if my levels get way too high to start discussing the Inteferon. He's been my doctor for 7 years and I completely trust his decisions. And thanks for the compliment about my post to usenet. I've been down the same path as he is now,
Paul - 27 Apr 2006 07:41 GMT On 26 Apr 2006 20:10:57 -0700, nightcreature43@msn.com, in message ID <1146107457.176431.244420@j33g2000cwa.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote:
>The latest lab work I can unearth shows HCV 1,390,000. AST 103, ALT 58. >That bloodwork was done on December 23, 2003. I have another bloodwork [quoted text clipped - 7 lines] >his decisions. And thanks for the compliment about my post to usenet. >I've been down the same path as he is now, You may not want to read what I'm about to write but I'm going to write it anyway because I feel that it is very important.
Blood tests are NOT a reliable indicator of liver damage.
Your blood tests show that your ALT is a little bit outside the normal range. A reasonable number for someone with hep-c.
Now when I had my first liver function test, all my readings were fine except for two which were marginally above normal. In spite of this, when I had a biopsy, I was shown to have liver damage that equated to something like stage 2 grade 3. This was why I treated even though I had normal blood test results. There is nothing wrong with holding off treating in order to wait for a better drug to come along or even because of other medical issues. However, in order to wait safely, a biopsy is very important. Holding off from tx on the strength of blood tests alone is a risky strategy. You are possibly making a life threatening choice with only a small fraction of the information. The bit that I can't understand is that your doctor ought to know this. Is the doctor you are seeing a General Practitioner rather than a liver specialist/hepatologist? Perhaps he is unwilling to treat you because of your drink/drug background? Or maybe you have discussed your fear of interferon with him and he is concerned about your ability to adhere to treatment? Maybe you have a medical issue that would make treatment particularly difficult for you?
Assuming that the doctor is a GP, while many GPs are clued up about hep-c, it is true to say that many are not. It is possible to lose a huge amount of your liver function before it shows up on blood tests. I had"normal" tests but there was even "occasional portal to portal bridging" on my liver.
Interferon and ribavirin are unpleasant. To pretend otherwise would be silly of me. Sometimes there are very nasty reactions to them but your blood would be monitored regularly so that treatment could be stopped or reduced if problems developed. However, the fact is that the vast majority of people complete treatment and apart from a small percentage, the side effects are temporary. My main ones were excessive thirst, fatigue, and in the last few weeks my head went a bit cranky (not that I'd notice much difference :-) ) . Treatment is doable.
So I know you haven't asked but I've got a couple of suggestions for you.
1) Try to maintain total abstinence from alcohol. If need be, get some help. Maybe see a counsellor or go to AA. Even better, do both. Slipping off the wagon periodically is not such a good thing - especially if you have a damaged liver.
2) Unless there are medical reasons why you cannot do so, get yourself a biopsy. In order to achieve this, get yourself referred to a liver specialist if you have to. At least if you still decide not to treat, you will be doing it with a much better knowledge of your condition. It may be that your liver is just fine anyway.
The above are not in chronological order. You can start the ball rolling on both of them on the same day if you choose.
I hope my bluntness hasn't offended you. I have done it with good intentions.
nightcreature43@msn.com - 27 Apr 2006 11:17 GMT No offense taken. My doctor is a General Practitioner. He did make appointments to see two liver specialists. The first one I went to talked to me like I was 5 years old and with an IQ of a house plant. I simply got up and walked out of the building. The second specialist was no better. The way I was treated wasn't from going in with a nasty attitude but I'm quite sure because of my appearance. I'll just say it's Gothic. My medical doctor and I just agreed to bloodwork every six months to monitor my numbers don't change too rapidly. We've both decided if the numbers start to increase dramatically I'll go to the ER and have them checked. He's been my doctor for almost 5 years and I have no reason to doubt his advice. I'm doing well staying sober but even my doctor said one glass of wine with dinner once a week is fine. I do need to do another liver biopsy though. My liver and pancreas are making me look nine months pregnant and ready to deliver twins. Thanks for the advice.
Paul - 28 Apr 2006 08:21 GMT On 27 Apr 2006 03:17:08 -0700, nightcreature43@msn.com, in message ID <1146133028.077750.146120@i39g2000cwa.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote:
>No offense taken. My doctor is a General Practitioner. He did make >appointments to see two liver specialists. The first one I went to [quoted text clipped - 11 lines] >making me look nine months pregnant and ready to deliver twins. Thanks >for the advice. How long is it since the last biopsy and how were the results? Periodic biopsies (3 - 5 years are the norm) for someone who wants to delay treating are the most reliable way of assessing damage. It is possible to go all the way to early cirrhosis with normal blood test results.
That swelling in the abdomen you refer to does not sound good. I think you should get your GP to refer you to a specialist ASAP. It may be nothing but it sounds like you should get it checked out soon. Also, regarding the odd drink of alcohol. A person who has never had a problem with alcohol may just get away with it. Someone who has had an alcohol problem is playing with fire as it can escalate more easily. I think it would be better to at least lay off the stuff completely until you get this swelling checked out. Does your GP know about this swelling?
elmoemerson@webtv.net - 26 Apr 2006 12:46 GMT So what's your point? Is your latest entry meant as an apology? Are you reaching out for help? I don't think you pissed off a lot of people back then....we realized you were merely a dickhead, the kind that passes thru here from time to time. :-) elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Boogie On - 27 Apr 2006 04:52 GMT and some dick heads have stayed around forever. like dick head elmo? ahahahaahaa! lol reminds me of Welcome back, Kotter..... welcome back welcome back welcome back! and good old dick head cody. a pain on monitors around the world. but, "he saw the light". pardons for some, for some no pardon? pardon me..................
elmoemerson@webtv.net - 27 Apr 2006 13:00 GMT Re: A post I made years ago Group: alt.support.hepatitis-c Date: Wed, Apr 26, 2006, 11:52pm (CDT+1) From: rumwithorangejuice@webtv.net (Boogie On) and some dick heads have stayed around forever. like dick head elmo? ahahahaahaa! lol reminds me of Welcome back, Kotter..... welcome back welcome back welcome back! and good old dick head cody. a pain on monitors around the world. but, "he saw the light". pardons for some, for some no pardon? pardon me.................. ////////////// Ahhhh.....dickhead Randy, the racist, is back again. Randy, normally pardons follow words of remorse.....you know, an apology. I didn't see that in Nightcreature's post. dickhead elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
nightcreature43@msn.com - 27 Apr 2006 05:09 GMT Ouch! (just kidding)! One thing no one will ever take from me is my warped sense of humor. And you are correct about me being the prick from Hell on HepC sites. I will say I'm sorry if I drove members insane and had them trying to figure out different ways of torturing me. But when I was ready to just say "Screw It" I found one person who didn't give up on me, even knowing about my substance abuse. We still chat nightly. I can't change my actions from when I first found this site, and doubt I would. It took that person who believed in me to get me where I am today.
Stretch - 27 Apr 2006 02:48 GMT > My God! I had no clue you guys still have that post. An explanation is > in order here. That post I sent on 09-17-2003, and labeled "HepC: Who [quoted text clipped - 8 lines] > know I pissed quite a few people off, But I am not the same person who > sent those e-mails out 3 years ago. Welcome to the Internet.
The Magician - 27 Apr 2006 09:32 GMT >My God! I had no clue you guys still have that post. An explanation is >in order here. That post I sent on 09-17-2003, and labeled "HepC: Who [quoted text clipped - 8 lines] >know I pissed quite a few people off, But I am not the same person who >sent those e-mails out 3 years ago. It's good to see that your finally getting yo sh.t together. What you did in the past is of no importance... it's what you do now, and in the future that makes a difference. As an ex-junkie coming up on 10 years clean next week, I do have to tell you from first hand experience... don't take "falling off the wagon" too trivially, even if it's getting loaded on a 6 pack of beer . And don't think that it's something that's supposed to happen and is OK. While lot of people in substance abuse recovery DO relapse a few times in the begining... it isn't a requirement, and it's a mindset you should try to get out of. Peope do make an occaisional mistake, but they don't have to. Work a stronger program if your in one, and if not... get in one. Like a friend of mine used to say... "Under every can of beer is a needle full of dope waiting for me." All it would take for me would be one night of going out with the guys for a few beers, getting buzzed and deciding that a bag of dope sounded good. It would be an immediate death sentance for me because my body wouldn't tolerate it the way it used to, and I'd be dead in a New York minute. At the very least... I'd be back in Hell again if I managed to survive the night, cuz I'd be "off to the races" again. And I have a 10 yr. list of friends who were also in recovery, who are in the ground because they "fell off the wagon", and went out for just one night... but never came back.
But it's FANTASTIC that your doin' da right thang now, and your in the place you need to be, and getting better each day. Well done!
Yesterday's gone, life is in us today... and we make our tommorrow's.
Good luck my friend, may your God lift up your heart, and watch over you and bless you.
da magish
http://www.themagician8.com/
http://apparition8.blogspot.com/
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