ascites/edema is horrible

Hi everyone. I was wondering if anyone else has had similar problems and has any advice for me. My cirrhosis is pretty bad and has been giving me these fluid problems on a regular basis. My edema is pretty much constant everyday since being diagnosed a few months ago. At first I responded to diuretics, but they just don't seem to work anymore. I have frequent ascites also. The last couple of weeks it is has been horrible. Most of my pants wont fit. People at work keep congratulating me on being pregnant. (I"m not). I can hardly eat because I am always so full I feel like I am going to burst. My doc just keeps upping the dose of my diuretics. The increase has helped only slightly. Doctor says she doesn't think there is enough fluid to do the belly tap thing with the needle. Sure feels like enough to me. I just feel like this is never going to go away. I am so frustrated and uncomfortable. Lately all I want to do is cry. I accept the disease. But this complication has just become too much for me. Has anyone else been through this?
-Gina

By Heron
Posted February 9, 2008 at 11:51 pm
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Hi Gina,

I was diagnosed based on edema and ascites. Yes, it was horrible! I felt as though my body had been transformed into a strange parody of itself. I was also exhausted and I'd get overwhelmed by sadness at times. I called it a Wilson's sink. And I had cramps in my feet, legs, and hands, stumbled for no reason, dropped things a lot.

But I got better after being treated with Syprine and Galzin. I think controlling the copper and then supporting the liver in healing by eating things that are good for it are the most important things. Also resting a LOT and if possible elevating your feet.

I am sorry that you are going through this. Are you on WD medication? For how long? When were you diagnosed?

Ann

By Gina001
Posted February 11, 2008 at 4:12 pm
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I was diagnosed 3 months ago when a routine doctor's visit suspected I had a lot of questionable fluid in my abdoman. I have been on Syprine now for about 2 months. I have also had horrible cramps all over my body for the longest time now, but that is starting to get better. With my diuretics the ascites seems to be very slowly coming down. So your ascites adn edema became better over time with treatment? I have been worried that this is just how it is going to be from now on. Thank you so much for your advice. I will be more conscious of getting lots of rest and elevating my legs. I am also watching my sodium intake like a hawk now.

Sounds like you have been through a lot of what I am going through. I really appreciate your comment Ann. It means a lot. Responses from people like you give me hope.

By the way do you know what causes the cramps? I never really asked my doc about this.
-Gina

By Heron
Posted February 11, 2008 at 9:25 pm
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Hi Gina,

I'm glad that you're noticing an improvement! It's typical for WD symptoms to persist for awhile but most people improve with treatment and many get back to normal or close. Whether you get all the way better depends on how much damage the copper has done and how much healing your body is able to do.

In my case, I have "end stage" cirrhosis ie scar tissue that will likely remain for a long long time, but my liver function tests are mainly normal because my liver generated new healthy cells. The edema and ascites went away within a couple of months leaving me extremely thin and extremely hungry, tired, weak, sometimes emotional, and subject to cramps. It took much longer for the sadness and cramps to go away and they still come back a little bit at times. The rule of thumb is that for most people symptoms continue to improve over about two years, but this is only an average -- some things continue to heal after that. So three months is not really that long. You'll probably keep getting better and better!

For about a year I ate and ate and did not gain weight. Then I gained it all back plus more that I didn't really need! I think my body freaked out during the time that it was hard to eat because of ascites and decided that it was starving. It's taken awhile to get back in the habit of eating moderately again. But I also think that I was hungry in part because my liver genuinely needed a lot of nourishment. You might want to check out foods like dandelion greens that support the liver in healing. Dandelion greens are delicious sauteed with garlic and are also a mild diuretic.

I never got a clear answer from doctors as to what caused the cramps. They said they weren't caused directly by the copper neurologically, but nonetheless they got steadily worse until I was treated and then got steadily better. I think when your liver isn't functioning well, your enzymes, electrolytes, and hormones can all be thrown off and thus indirectly cause cramps.

WD is really strange. It seems to be able to cause almost anything. The good news is that Syprine and Zinc work.

Keep resting!

All the best,
Ann

By spunart
Posted February 12, 2008 at 12:40 pm
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Hello. This is how my Wilson's presented 4 years ago. Been on low (2000mg) diet since then. Had multiple "taps" in the beginning. One time I "lost" over 10 lbs of fluid! I have been on high doses of Furesomide and Spironolactone (both diuretics)...the Spironolactone binds potassum to combat too much potassium being lost with the sodium, secondary to diuretics. Cramps could be due to too little potassium or another mineral.magnesium? Still on 80 mg of Furesomide a day and 100 mg of Spironolactone a day. When I've tried to reduce, I have more edema in my legs...I also may have a bit of fluid in abdomen right now.....believe me, I hate it too. I believe I was the most uncomfortable for about the first 6 months. When I was in the hospital originally, I had so much ascites, my breating was bothered. The docs pretty much had me telling them when I became too uncomfortable...and yes, the tears and the frustration and the fears that it could all recur....but have to hope and do "all the right things." I keep my legs and feet elevated...I don't work anymore...but I feel pretty well most of the time. Good luck to you. Toni

By Gina001
Posted April 17, 2008 at 6:33 pm
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Thanks Ann and Toni for your replies. Like you Ann, my hepatologist told me I am in end stage cirrhosis. I brought up the body cramps too him, and he said that is not unusual with liver disease. He prescribed Quinine and it has worked like a miracle. He said it actually had nothing to do with postassium, (something else but can't remember.) Cramps are a very rare occurance now with this med. My husband sure is glad that I'm not screaming in pain any more. I know he felt so helpless. I just wish I was not taking countless number of meds for a countless number of symptoms. I am getting more depressed lately. I feel like I am now left with a life where I can only function by taking tons of meds, I will never have a baby (which takes away much of the reason I had for living), I will get behind at work, maybe I will even lose my job, because I spend so much time in the bathroom from all these diruetics I take and the lactulose laxative I drink 3 times a day to treat my encephalopathy. I don't want a long long life. I want a good QUALITY of life, even if it is for a shorter time. I don't know what I am even getting up in the morning every day for anymore. Sorry for this downer of a post.
-Gina

By Rose5
Posted April 21, 2008 at 7:31 am
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Hey Gina x

Its only natural to get down specially when you have to take all this in, we are only human - but remember you will get through this...hang in there

hugs for you and write back how you are doing :)
stay safe and thinking of you
Rose
x

By Schwebke
Posted May 5, 2008 at 8:17 am
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Gina,

Perhaps you should switch to cuprimine. I have been on it for over 35 years and the only side effect I had was a loss of taste for the first years. I blew up like a balloon before I was diagonsed too, but diruetics helped. I don't eath anything with salt or sugar. In fact, I eat only the bare minimum. That seems to have helped.

Good luck. Stay positive.

Linda

By Gina001
Posted May 8, 2008 at 11:18 am
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My hepatolgist, my general Gi doc, and my ob/gyn/fertility specialist all agree strongly that it would be way to risky for my to try and get through a pregnancy due to being in end stage liver disease. They all say wait until after your transplant. Guess I just have to wait.....

Welcome to Inspire!

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