Ascites caused by liver disease

I know that some people have a major problem with this and have to be drained often.  If it becomes too much, some will get the TIPS done.  Rick knows quite a bit about this problem.  I had ascites, but they put me on Lasix and potassium pills (high doses at first.)  Because I had a hard time swallowing the potassium tabs, they replaced it with Aldactone.  It took awhile to get it under control, but I never was drained.  I even suggested it once, as I looked like I was 9 mos. pregnant, but was told that the risk of infection was too great.  I had it done once when I developed a pocket of fluid following hernia repair in my midsection.  I had had several drains placed following surgery, and they kept clogging up.  This last time, the fluid was drained and another drain put in me and that one finally worked.  No more fluid after that, but I'm still on low doses of Lasix and Aldactone.

Hugs,

Connie

<Applause to Rick>  Thanks for the great explanation of your personal experience, Rick.  You have the term and spelling correct, too:  paracentesis.  One little typo:  I'm sure you meant to say "in the UNlikely event they" instead of "likely," so I fixed that for you.

I know your post will be of great help to DeeDee. 

Thanks and hugs,

Connie

Hi Connie,

I have just started with this fluid thing. My liver doctor isn't sure about my liver beig the cause, but I do. The pain across my intire abdominal section is sometimes so intense. Most being around the liver. They did an ultra soound and did find fluid in the cavity outside the liver and stomach area.  They have put me on a low dose of fluid meds and I need to check my weight daily. Well, it isn't working I am so uncomfortable and feel at least 6 months preg. Sometimes the pressure pushes up towards the lungs and I have a hard time breathing ( I do have asthma). They want me to have another ultra sound to check it. I am not a patient person when it comes to my health. I don't like waiting I just want to fix the problem. I can not get comfortable to sleep good. I am getting so tired. this has been going on for about a month. My liver doctor doesn't feel it is from weining down off the pred. I was finally at 2.5 and he says my labs were still really good. I need some input where this is the first time this has happened to me. They won't even come up with an answer as to what is happening and why.

Cindy

Thanks child 4 for your info. But what worries me is i am not ready for a transplant, not even close to the end of liver disease nor do I have liver cancer. this is why I am so confused about this happening to me now. They do an ultra sound every 6 months to watch for ascites. All have been fine over the years. I do wonder if it is a reaction of coming down off pred. I have been on it for 16 years and now have many other problems and diseases. But my labs are good on the  2.5. So my liver doctor is not sure what is going on. Nor my md. They don't want to drain due to infection which I can understand. But I can't continue this way. The fluid meds aren't working I go up one day and back down the next and so forth. I do thank you for your words and I hope that your mom does well with a transplant. It isn't fair for so many to have to deal with these diseases. Life is to short to begin with. But please do your best to keep your faith and hope flowing. I always pray for those like me and I will now add your mom to that list. She needs family and friends to supprt her on a daily basis.

Thanks again, Cindy

Hi Connie,

I am on 400mg of aldactone split morn and night. I thought about asking that. But no one has called me back all day. So I will have to find out tomorrow hopefully. It seems to work a little better at night then the day. But then there is no sleep and then trying to comfortable all over again. To only wake up and go again. But it is so little. I drink water all day to try to push it through and usually works.  I have to be careful of stripping to much fluid due to my osteoarthritis. It strips the fluid out of my joints and then that is some painful.

Thanks for your help and will let you know what happens.

Cindy

this is the first time I have had this fluid. I mean my ankles and legs sometimes swell in the heat. And I looked more closely at the diuretic and it is only 100mg instead of four. So yes I would need to go up. I am waiting for a call from my MD. you wonder sometimes why do they make the money they do.  It's Friday and they better get back to me and call something in. I really need sleep. I can't get comfortable laying down. It's like when your at the end of pregnancy and no matter what you do it does't help.

Cindy

Hi connie, I finally got to the doctor. I knew I couldn't go threw the weekend. So I went up and sat at the office. They saw me and just doubled what I was already on. Call on monday to let them know how I was.  Slow process isn't it. Thanks for asking and will let you know if things change. I am still so fatiqued from getting up all  night. My husband doesn't think it is good that I am sleeping on and off through the day. But I need to sleep. I can't function.

Take care . Cindy

Hey Connie, I have lost about 2.5 lbs. over the weekend. They are gong to see me on Thursday.
The reason they don't want to put me on lasix is because I have osteoarthritis and a long time ago it stripped all the fluids in my joints and I was in a lot of pain. I forgot about that. It was pretty painful. So they are trying to avoid this if possible. Just got a call from my Liver Dr's office. He is going to call me around 4:00. today. I had all my labs done on friday and I am really nervous.
As to my husband and everyone else they all think I am in deep depression because I sleep so much. My husband has been through this with me for a long time and he knows what my illness intails. Then you add slow thyroid, the arthritis, diabetes, Asthma. Then not only the diseases but the drugs to treat them.
Thanks for listening and helping. Will let you know what he says. Cindy

Hi Connie,

Sorry I didn't get back to you last night. But I was really upset over my diease. My Liver Dr. called me and changed meds. He brought the aldactone down to 100mg and he did add lasix of 20mg. He said that my liver is probably getting worse. He wants labs once a week again. my

labs this week went up a little. ast's was 90 and alt's were 50.  He wants to get a handle on this fluid before we think of the other things we need to do.  He wants me to loose 1lb. per day and keep it off or he will up the lasix again.

Yes I am a little depressed now. But I can pull myself out. I have a little someone special that helps me with that. My 7month old granddaughter Grace.

Thank goodness for you people it helps a lot. Take care of your self.

                 

                                                       Cindy

Hi All,  I'm new here, and hopfully will revive this thread.  I'm so discouraged with the doctors.  Long story to get to the point where we are now, and if necessary Ill tell, but in a nutshell........ My husband, 45, has cirhosis (sp?) found after he had his gall bladder taken out 7 months ago.  Prior to that he had absolutely no symptoms of anything wrong.  After the surgery, he began gaining fluid, and only after about a month I discovered what it was and why.  He has been having to go every week to get a paracentesis and taking an average of 10-12 liters each time.  Due to an infection and an abcess, and the surgeries required to peek at the problems,  he now also has an umbilical hernia.  Needless to say he has been miserable.  So.... doctor sugested a TIPS.  I researched it and it was 50-50 as to get it..... kinda scared me what with the possible side effects.  Well he is so miserable with the fluid accumulation and not to mention the cost each week of getting drained, he had the TIPS done.  Went fine.  but no stop in ascites.  Went for an ultrasound 4 weeks later and lo and behold there was a clog.  So he had a "revision" and they removed the clog.  Still now, another 5 weeks after the revision, nothing.  It still hasn't worked.  Now, after the doctor visit yesterday, he informs us that 20-30% of those who get TIPS, it doesn't work, period.  It sure would have been nice to know that prior to.  So, here we sit.  His liver function tests are fine and in normal range, and his MELD score is 11.  He isn't bad enough to get put on our state's list for a transplant, and the TIPS didn't work.  This is taking a toll on both of us, and it is just very frustrating for me because we have two kids age 11 and 13 and they can be a bit demanding, and Im basicall now a Single mother of 3 and one of them is special needs....... I feel I have lost my husband because all he does is take naps and go to bed early becasue he  is so tired or it is just more comfortable for him to lay down....  Our love is strong and we will stick it out through the bad times, but I sure dont' look forward to spending the next 30-40 years (if he makes it that long) living like this....  Are there any other recommendations to stop the ascites?  he takes low doses of aldactone and lasix cause if it is increased his potassium shoots through the roof.

thanks for listening...

 

sad-in-Bama, welcome to the forum.  If you know how to copy and paste, it would be helpful if you would copy your initial post, hit New Topic instead of Reply, and paste it into the new thread.  Give it a title, too.  This way, others will see it and you will get more responses.  When a newbie posts on an old thread (in this case a year old), you tend to fall through the cracks.  We want you to get as many replies as possible.

I'm sorry that the TIPS didn't work for your husband.  He might try taking a higher dose of Lasix along with potassium tablets (he needs to speak with his doctor about the dosages, but don't get the OTC potassium--it's not strong enough.

Also, his napping and going to bed early is probably caused by cirrhosis.  It's just part of liver disease.  He could also be suffering from some depression due to how his life has changed. 

You have come to the right forum as you will gain a lot of information and support here.  Just try to start a new thread.

Hugs,

Connie

Thanks all. I will post a new thread tomorrow. Glad you guys saw this.