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Date Posted: 22:34:55 04/23/02 Tue
Author: susinni
Author Host/IP: susini1.Stanford.EDU / 171.64.181.9
Subject: ((((Doris)))) ((((Hubby)))) ((((Friend)))) -- Sg has LOTS of good information, and a really great diet/exercise program...
In reply to:
Doris
's message, "I'm Really Scared" on 20:13:39 04/23/02 Tue
and he's way willing to share his information, system and tips. Stick with his advice, and probably a lot of good can come from a very skeeery situation. *comfort* and *support* and prayers are coming your way! --susi
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(((Doris))) -- Cat, 07:44:30 04/24/02 Wed (NoHost/156.63.134.4)
My husband has had ascities for at LEAST five years. I kept trying to convince his doc of that (took me a year), and finally when the doc saw the light, he was put on diuretics. He lost 60 pounds in 30 days. He has been controling it like this for the last two years, he takes a mid level dose of meds to control it and all is well. His diet is terrible, he only likes "shit" foods and that's what he eats. I'm sure SG's diet advice is much better. I guess some people can get away with different things.
Don't panic Doris. This can be taken care of. Your friends doc should be able to help her.
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Re: To CAT -- Doris, 10:12:13 04/24/02 Wed (px3cv.gv.shawcable.net/24.64.223.205)
Thank you for a very reassuring post, Cat. I am a bit confused..your hubby has had ascites for 5 years? does this mean he is on a transplant list? All I have read, tells me that once ascites is present, you are in ESLD...so, if I am to understand this, a person can control this complication with diet / diuretics indefinatley? I am trying hard to get a clear picture of this condition and be able to help my friend all I can. Thanks for your help.
Doris
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Doris -- Cat, 10:57:12 04/24/02 Wed (NoHost/156.63.134.4)
I don't know for a FACT that he has had it that long, but I do know for a FACT that his gut was WAAAAAY bigger than it ever should have been and no amount of starvation dieting would remove it (he looked pregnant). The only logical conclusion is that he had it all that time before he was ever diagnosed with HCV.
He is not on a transplant list. He just failed TX for the second time. His doctor, who is one of the best in the country, said that Ron is in "a funny window", not sick enough to consider transplant, and treatment is still an option, but if he gets any worse........personally, I think he may be getting a little worse, maybe it's just the left over TX crap still hanging on. We will find out next month by his bloodwork.
I don't know how long medications can control Ascities. He has been well controled for the last two years with them. I would suspect that eventually the meds would not do the trick, but for now they are working fine and he still has quite a bit to go before it is a high dose level.
His former doctor (two years ago) told us that he would expect Ron would need a transplant within five years if the virus could not be stopped and perhaps even if it was stopped. The virus has not been stopped. For the most part, his blood work has not gotten any worse since that time. There have been a very few small changes, but nothing to freak out over. I am anxious to see what the next round shows because he has been feeling pretty crappy ever since he quite the TX (around 2 mos ago I guess).
If I can answer anything else, I'm more than willing, just fire away.
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Question to Cat -- Doris, 11:11:11 04/24/02 Wed (px3cv.gv.shawcable.net/24.64.223.205)
Hi again, and thanks! I do have another question...was it the swollen stomache that was the first sign of ascites? Or did you notice his feet / legs were swollen? My friend started out 2 weeks ago with very swollen legs; they suspected Thrombosis at first. She was told 3 years ago, that she had early cirrhosis...my husband was told the same thing, around 2 years ago. Are you saying that your hubby's Doctors are *NOT* calling this end stage liver disease? Thats where I am confused...since all I've read says ascites occurs at end stage. Maybe I am mixed up...and ascites is a complication of cirrhosis, but not always a signal that cirrhosis has progressed to end stage?? All I know is, since my friend and my husband seem to mirror one another with their hepc history; I am going to be extra vigliant, watching for any signs of ankle or leg swelling. While I know everyone is so different, and this may not happen with my husband...I just think it's best for me to keep an eye on it...our Doctors here are *very* under-educated re:hepc. Best of luck to you and your husband. Do you also have hepc?
Doris
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Hi Doris -- Cat, 11:28:57 04/24/02 Wed (NoHost/156.63.134.4)
His gut was all that was swollen. His legs and ankles have NEVER swollen, his doctor always checks them and they never are and never have been. He looked like he was nine months pregnant though.
The doctors have never said the dreaded words 'end stage' but with his former doctor predicting a transplant within five years, it seems (to me anyway) that if he isn't in end stage, then he has to be knocking on it. I don't know how long someone can be 'end stage' before they have to get a transplant or take the other route (the one we don't want to think about). I have never asked the docs flat out - I don't want to hear it said, know what I mean? I figure that if worse comes to worse and it's a transplant or else, I will have time to freak on that then.
I can tell you this. When Ron goes back to the doc next month, we are supposed to talk about options for trials. So, for the moment, I am still hopefull that something will stop this frigging monster in its tracks.
I think this disease is very different for everyone and the choices you make along the way have a big impact on what comes your way.
One other thing, Ron also has (at a year and a half ago) very tiny varacies, we were told there was no need to worry about them at that size. He will have them checked again very soon.
It seems to me that some people can have all kinds of complications and still deal with them fairly well. Some days for Ron and pretty bad, but some days are pretty good too.
And yes, I am one of the club also. A little gift to myself almost four years ago. What an idiot. Oh well, as Scarlett said, "I'll think about that tomorrow".
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