Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 > hi randy,,,i was just reading your post about your dr not wanting you > to try treatment because of your psych history??? If this is the > only reason then I would definately change drs. What do you have to > lose? My husband has hepC, cirrhosis and has had a cancer tumor > removed from his liver...he is no longer able to work. We wasted 4 > years with his old dr that told him that it was all in his head...he > was itching like crazy and the dr would tell him... " well you are just > an itchy kind of guy " he would complain of headaches and he'd say > that " he was just a headachy kind of guy " He never even did a blood > test...by the time he switched drs he didn't have much liver left. > He tried treatment twice...the first liver specialist was a jerk...my > husband would go for a follow up and mention the side > affects...ie...fatigue...flu symptoms...upset stomach...the dr would > yell at him and tell him... " So stop taking it if you can't handle it > and don't waste my time " ...UGH. Even after switching drs they were > still hesitant to tell us any bad news...It was by accident that we > found out how bad it was...My husband went into the hospital with > stomach pain due to his gallbladder and the Dr on duty said.. " you > didn't tell us that you have cirrhosis. " My husband said...that's > because I don't...and the dr said...Oh yes you do...and > BAD...too...that's when we went to Mass General. We now question > everything and push for answers... > > You deserve to live...fight for yourself...My husband is almost 18 > years clean and sober...he also blames himself for his past > lifestyle...we all make mistakes...he could have got this disease a > number of ways...I tell him not to waste his energy on the past but > to use it to fight for the future... > > My husband is also on Lasix...he has a terrible time with retaining > fluid...he takes 25 mg of lasix and 120 mg of furosemide a day..he > also suffers from terrible cramps...it can be due to not enough > potassium in your body...the lasix can flush it from your > system...your dr should be able to tell if your levels are low from > your blood work. He takes 2 capsules twice a day 10meq each to help. > when he gets cramps real bad orange juice is a quick fix. > > I hope some of this info helps...if you don't mind me asking...where > do you live? If there is a teaching hospital near you I would > suggest getting in touch with them...they are more open to trying > different things...I know mass general in boston even has studies > where you can get your meds for free...just a thought...our prayers > are with you... > > Kath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 I have been trying really hard to keep out of this but I can't any longer. It's really easy to sit at a keyboard and tell someone else what they should do when you don't know there full history. I don't know Randy's full history but we've talked and I know a little and I would not presume to tell him what to do about his medical treatment. What I can tell you is that he see's the same group of doc's my husband does and we moved 1700 miles across the US to be seen at this particular hospital. They are a cutting edge hospital and up on all the latest studies, techniques, and meds. Randy and my husband are getting the best medical care available to hcv patients and are at a hospital where they specialize in hcv. The Bowles Liver Center is world renowned in it's study of alcohol related liver problems and treatment. We left New Mexico, which we loved dearly, because we couldn't get decent medical care and moved to North Carolina because we could get excellent medical care. All things need to be considered before treatment is begun and I wouldn't want a doc who just started the drugs with no regard for my past medical history. Randy, you hang in there and talk to your docs about the low dose treatment and see what they say. Talk to them about a trial period and what other options you have. The main concern you have at this point in time is treating the cancer and making sure it doesn't grow or change. I'll talk to you next week, Lots of Love, Loretta Friends are angels who lift our feet when our wings have trouble! -- Re: treatment - Randy > hi randy,,,i was just reading your post about your dr not wanting you > to try treatment because of your psych history??? If this is the > only reason then I would definately change drs. What do you have to > lose? My husband has hepC, cirrhosis and has had a cancer tumor > removed from his liver...he is no longer able to work. We wasted 4 > years with his old dr that told him that it was all in his head...he > was itching like crazy and the dr would tell him..."well you are just > an itchy kind of guy" he would complain of headaches and he'd say > that "he was just a headachy kind of guy" He never even did a blood > test...by the time he switched drs he didn't have much liver left. > He tried treatment twice...the first liver specialist was a jerk...my > husband would go for a follow up and mention the side > affects...ie...fatigue...flu symptoms...upset stomach...the dr would > yell at him and tell him..."So stop taking it if you can't handle it > and don't waste my time"...UGH. Even after switching drs they were > still hesitant to tell us any bad news...It was by accident that we > found out how bad it was...My husband went into the hospital with > stomach pain due to his gallbladder and the Dr on duty said.."you > didn't tell us that you have cirrhosis." My husband said...that's > because I don't...and the dr said...Oh yes you do...and > BAD...too...that's when we went to Mass General. We now question > everything and push for answers...> > You deserve to live...fight for yourself...My husband is almost 18 > years clean and sober...he also blames himself for his past > lifestyle...we all make mistakes...he could have got this disease a > number of ways...I tell him not to waste his energy on the past but > to use it to fight for the future...> > My husband is also on Lasix...he has a terrible time with retaining > fluid...he takes 25 mg of lasix and 120 mg of furosemide a day..he > also suffers from terrible cramps...it can be due to not enough > potassium in your body...the lasix can flush it from your > system...your dr should be able to tell if your levels are low from > your blood work. He takes 2 capsules twice a day 10meq each to help. > when he gets cramps real bad orange juice is a quick fix.> > I hope some of this info helps...if you don't mind me asking...where > do you live? If there is a teaching hospital near you I would > suggest getting in touch with them...they are more open to trying > different things...I know mass general in boston even has studies > where you can get your meds for free...just a thought...our prayers > are with you...> > Kath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Randy, Hope I wasn't to overboard, I never want to hurt anyones feelings but I just couldn't stand it any longer. You know I only want what's best for you and I do believe you are getting good medical care. You know you are always in my prayers and I'll try to remember that rock. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Loretta is completely right here. None of us has all the facts about each other's total picture. We can only speak from our own experiences. I want to reiterate my position that a change of doctors is in order if your doctor won't even discuss tx with you (why or why not it's right for you). A change in doctors is not merited just because a doctor who knows us, our history & the subject matter disagrees with us and explains why. I was disappointed when my doc put my tx on the back burner at first until we could deal with my pain issues. But 20/20 hindsight assures me he was correct. The first time I was pregnant, I had a really bad asthma attack and was all freaked out at the ER about the meds hurting the baby. The doc calmly pointed out to me that I certainly couldn't have a heathly baby if I couldn't even breathe. Well, DUH, what was I thinking? Sometimes we have to treat the most threatening possibilities first. Faith is the ability to not panic. -----Original Message-----From: Loretta [mailto:3iggies@...] Sent: Thursday, August 05, 2004 7:09 AMHepatitis CSupportGroupForDummies Subject: Re: Re: treatment - Randy I have been trying really hard to keep out of this but I can't any longer. It's really easy to sit at a keyboard and tell someone else what they should do when you don't know there full history. I don't know Randy's full history but we've talked and I know a little and I would not presume to tell him what to do about his medical treatment. What I can tell you is that he see's the same group of doc's my husband does and we moved 1700 miles across the US to be seen at this particular hospital. They are a cutting edge hospital and up on all the latest studies, techniques, and meds. Randy and my husband are getting the best medical care available to hcv patients and are at a hospital where they specialize in hcv. The Bowles Liver Center is world renowned in it's study of alcohol related liver problems and treatment. We left New Mexico, which we loved dearly, because we couldn't get decent medical care and moved to North Carolina because we could get excellent medical care. All things need to be considered before treatment is begun and I wouldn't want a doc who just started the drugs with no regard for my past medical history. Randy, you hang in there and talk to your docs about the low dose treatment and see what they say. Talk to them about a trial period and what other options you have. The main concern you have at this point in time is treating the cancer and making sure it doesn't grow or change. I'll talk to you next week, Lots of Love, Loretta Quote Link to comment Share on other sites More sharing options...
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