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(((((Doris))))) -- toosh, 04:40:54 04/24/02 Wed (dhcp024-209-033-060.neo.rr.com/24.209.33.60)
Sweetie....to reply to individual messages....just go to the bottom of the message and click on "reply"....each individual message will have that except for the very first one...then you just scroll down to the form like you did w/ Susie.
Not much to add here, Doris....I hope a hug helps!
....Carol
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Re: Trying to Reply -- KAthryn, 23:57:48 04/24/02 Wed (spider-to041.proxy.aol.com/152.163.204.61)
Sooooooooo sorry you're scared......... even withOUT Hep C it's a scary world!!!!!!!! Please explain ascites to me..... I was diagnosed 5 years ago with Hep C but my labs hadn't changed until recently........ FYI: I'm in Stage 3
and I'm genotype 1B.
I also have a rare bone marrow disorder Myelodysplasia......it's a REAL bummer!!!!!! No cure........
all they can do for me is buy me time with blood transfusions and/or bone marrow transplants......... now I have a mass groing on a kidney and my doc told me yesterday that I have a suspicious lesion also!!!!!!! I'm wondering...... could the lesion be related in any way to ascites?
I can't make it go away for you but what I can do is let you know I KNOW....... we ALL know where you're at...... we've either been there or we will later......... maaybe not ascites but there's plenty more bad shit for us to deal with.
See if you can find a support group OR go to WEBMD.........
they have real doctors........ reputable ones that explain in great detail many conditions related to HEP C and other diseases.........
Start a JOURNAL....... write it in EVERYDAY!!!!!!!!!!
I bet in a month's time........ you can go back and read what you felt then and what you feel like now ( one month later......) I have a feeling it will be more positive than negative....... besides....... keeping journals is a wonderful way to VENT!! Fears, Frustrations........ everything!
HAng in there........ you can write me anytime.. I have a good Internet friend who also has HEP C..... she is a wealth of information...... AND....... knows alot about othere conditions....... AND alternative meds..........
I also have a sister who has been a nurse for 28 years! She's a good one to askt questions.........
I find that I panic big time when something NEW is thrown at me...... I thinks that's just human nature........ but it's also our nature to talk about it..........be scared...... it's ok..... it's a normal function........ just don't stay scared and alone....... share share share.....
I will surf tonight and tomorrow for you and see what I can find
HAng in there!
KP
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Re: I'm Really Scared -- dg, 21:20:43 04/23/02 Tue (Toronto-HSE-ppp3662893.sympatico.ca/65.95.153.250)
Hi Doris,
I just recently (March 17th) had a liver transplant. Before that I managed the ascites for 3 years.
Diet = no fried foods, no added salt, low salt products, no prepared meats, limit total liquid intake to 1.5 litres per day, no red meat, lots of veggies, no butter/margarine, only 2 servings of dairy product per day, only 2 servings of meat per day, 7 servings each of grain and veggie/fruit.
In the beginning, I was so bloated that they had to drain a gallon of fluid from my body. This was done as an out patient but in a hospital. It was a standard painless procedure. It took 4 hours to drain the fluid. Also I had to take diuretics on a daily basis. I also had to check my abdomen and ankles for fluid each day. Simple check. If the fluid increased, I increased the dose of diuretics.
IF you want more information just ask and I'll do the best I can to answer.
sg
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Re: I'm Really Scared -- Doris, 21:31:39 04/23/02 Tue (px3cv.gv.shawcable.net/24.64.223.205)
SG, thank you so much and it is amazing that you are posting this soon post-tx! Congratulations to you. I truly want to thank you...it is reassuring to hear from someone who actually managed with ascites for 3 long years:) I will pass that onto my friend; it will give her hope. Is ascites usually managed for long periods with diuretics? is the draining only for extreme ascites?
thanks again...sorry to have bombarded the board with this, but it hits close to home and I am concerned for my friend and for my husband...my family says it should make me worried for myself (I have hepc too) but it doesn't, my biop was very good (who knows about the future, tho?)
Doris
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Re: I'm Really Scared -- sg, 21:42:27 04/23/02 Tue (Toronto-HSE-ppp3662893.sympatico.ca/65.95.153.250)
Hi Doris,
I've talked to people who managed ascites longer than I did, so I'm not sure how long it can be managed. I was on a low dosage of diuretics and others are on high dosage. The diet is critical and I was religious about it.
When they drained me, I was so bloated none of my clothes would fit except an old track suit I had but it fit like a glove. Everytime I'd move it hurt as it seemed like my flesh was tearing. I could barely walk. So in my case I guess it was extreme. It is best not to let it go without getting it treated and start to manage it.
It can be managed, but you cannot ignore it.
sg
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dg????? -- toosh, 04:43:13 04/24/02 Wed (dhcp024-209-033-060.neo.rr.com/24.209.33.60)
lol....I thought you were someone new...almost gave you a welcome post!
sg...it is great to have you here. Someone that has "been thru it" and is now doing so well! Thanks, my friend!....Carol
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Re: dg????? Just fat fingers on the keyboard -- sg, 05:15:03 04/24/02 Wed (Toronto-HSE-ppp3660441.sympatico.ca/65.95.144.84)
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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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