Ascites caused by liver disease

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Nikki19
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Date Joined Sep 2009
Total Posts : 6
   Posted 9/22/2009 9:40 PM (GMT -6)   
How many times have you had your stomach drained of fluids (Ascites) due to end stage liver disease?  My husband just had it done four days ago and his ascites has come back to the point where he is uncomfortable and wants to go back to the ER.   confused confused

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/22/2009 9:52 PM (GMT -6)   

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



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 9/23/2009 2:46:44 PM (GMT-6)


Nikki19
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/22/2009 10:00 PM (GMT -6)   
Thanks Connie...hopefully I will hear from Rick soon.  If we go to the ER this will be his 5th one.  I am concerned that the medications are not working.  He has taken the lactalose a couple of times now and has not gone to the bathroom.  Also very little of the other...what to do.
 
 
 
 
 
 
 
 
 
 
 
 
 
 

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/23/2009 3:51 PM (GMT -6)   

<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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/23/2009 8:36 PM (GMT -6)   

Connie you are so right, Ricks reply is very informative and I especially like his last sentence. I am surviving and at the bottom of the ladder and no place else to go but up. Great attitude, I love it.

I will make sure I ask alot of questions and try to educate myself and make copies for my family incase my memory gets worse. I cant depend on my husband, his memory is shot and he has no clue about medical things,he always depends on me for this.

Take care and prayers for all,

DeeDee


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/24/2009 11:19 AM (GMT -6)   

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


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 9/24/2009 1:47 PM (GMT -6)   
My mom was having to be drainined every 3 days prior to transplant. There is a risk, of course, of infections and my mom's blood pressure would do a nose dive. They would replace fluid with albumin after 300 cc's (I think!) - the drs called it spa. I know that as soon as she would have trouble breathing, they would drain her - even in the ER and even if she had just been drained. be careful after, my mom's site did leak, and again, that is an infection risk. Mom always felt so much better after, and we had to remind her to take it easy. I shoudl say that at first, it was 6 - 8 weeks, but then became that frequent.

cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/24/2009 2:18 PM (GMT -6)   
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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/24/2009 3:40 PM (GMT -6)   

Cindy, have they tried increasing your diuretics?  Are you taking Lasix and Aldactone?  For a time, I was on 80 mg of Lasix a day and 200-400 of Aldactone, as they didn't want to drain me.  They really didn't see the need for it, although I was very uncomfortable, like you.   I am now down to 20 and 100 of the diuretics and that seems to be keeping me stable.  Ask about having your diuretics increased.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 9/25/2009 1:42:36 PM (GMT-6)


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/24/2009 4:59 PM (GMT -6)   

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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/24/2009 10:38 PM (GMT -6)   

Cindy, ask them about putting you on Lasix and cutting the Aldactone to about 200.  I was told that Aldactone is a "mild" diuretic.  You probably need to be on something stronger.  The reason I am taking Aldactone also is that it prevents potassium loss caused by Lasix.  Or you could try Lasix and potassium tabs.  Suggest it.  You might have more relief.  I take my pills just once a day, in the morning, but I still have to get up during the night to urinate at least once.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/25/2009 2:09 PM (GMT -6)   
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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/25/2009 2:47 PM (GMT -6)   

Cindy, I would definitely think you would need something a lot stronger than 100 mg of Aldactone.  When I had ascites, I also had terrible swelling in my feet and calves.  The calves would actually "weep" fluid.  I had someone perform a specified type of massage whenever possible, as the pain was awful and that's the only thing that would relieve it for a bit.  I think that long bout with fluid damaged the nerves in my feet, too, as they are painful at times and itchy at other times, even though there is no more fluid.

So many docs and clinics no longer work on Fridays.  I hope yours does and that you will get something called in...but don't count on it.

Hang in there!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/26/2009 6:41 PM (GMT -6)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/26/2009 6:49 PM (GMT -6)   

Cindy, well, that's better than nothing.  However, when you call on Mon., ask if there's a reason he can't prescribe Lasix; that most liver patients with ascites/edema are on Lasix. 

Let your husband know that liver patients are chronically fatigued and you need to sleep when you can.  I'm really glad that I live alone when it comes to being able to sleep.  However, I often do have to take the phone off the hook.  I was first awakened by a phone call at 10 AM today.  I was in no way ready to get up.  I took the phone off the hook and slept off and on until 6 PM today.  If I have to get up in the morning to go somewhere, I do it.  Otherwise, since I no longer work, I don't know why I should have to get up just because the rest of the world is up.

If you need naps, take them.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/28/2009 1:37 PM (GMT -6)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/28/2009 2:51 PM (GMT -6)   

Oh, I do remember you mentioned that once about the osteoarthritis.  However, I have OA and have never had a problem in that regard with Lasix.  I do try to keep hydrated.  It sounds like the increased Aldactone is working for you, though, so maybe that's all you will need.  He can even go higher with that, too.

When a person has one or more chronic diseases, there is almost always a component of depression, varying from mild/occasional to more severe.  Only you know if you are fatigued/exhausted from your illness or depressed or both.  Having hep C and cirrhosis myself, I know that I'm always tired, no matter how much sleep I get--it's like walking through molasses.  I get a little down from time to time, but it never lasts long.  Basically, it's just the fatigue from my liver disease, and right now recuperating from surgery. 

Thanks for posting, Cindy, and do let us know the outcome of your blood work.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


cj7
Regular Member


Date Joined Jul 2009
Total Posts : 26
   Posted 9/29/2009 11:16 AM (GMT -6)   
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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/29/2009 1:55 PM (GMT -6)   

Cindy, it does seem like you have a good doctor.  I'm glad that he finally prescribed Lasix.  However, if you are not losing the fluid he thinks you should, he may increase it.  I think they started me at 80 or 60, can't remember which.  It sounds like he is starting you with a low dose so he can increase if necessary.  I understand your feeling a little down about the disease getting worse.  Unfortunately, it doesn't get better w/o hep C treatment or transplant.  We just try to stabilize it and do the best we can to keep it stable for as long as possible.

I'll bet that grandchild is a real doll baby.  I'm glad you have her to focus on when things get bad.  What a special name, Grace.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad_in_Bama
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Date Joined Sep 2010
Total Posts : 3
   Posted 9/22/2010 5:01 PM (GMT -6)   
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...
 
 

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2282
   Posted 9/22/2010 5:29 PM (GMT -6)   
So sorry to hear that the TIPS doesn't seem to be working... it worked for my partner for 3 1/2 years... and juggling all your responsiblities must be difficult.. I will be praying for you.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/22/2010 5:41 PM (GMT -6)   

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



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/22/2010 10:11 PM (GMT -6)   

Rick, has your e-mail addy changed?  My mail to you keeps coming back.  Either change it in your profile or send me the correct one!  Thanks!  Nice to see you here again!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

sad_in_Bama
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/22/2010 11:52 PM (GMT -6)   
Thanks all. I will post a new thread tomorrow. Glad you guys saw this. :-)

hopesprings7
New Member


Date Joined Sep 2010
Total Posts : 18
   Posted 10/1/2010 2:51 PM (GMT -6)   
unfortunately my mom seems to be one that will have to deal with the constant swelling. we were admitted to the hospital a little over a week ago, and she was tapped once and they removed 4L of fluid. Literally hours later, he tummy was blown up again like she was 9 months pregnant. Her feet/legs are also always huge and swollen So they tapped her again 2-3 days later, and not even a day later, she was back to being huge and swollen. At home, she was on 80mg of Lasix and 100mg of Spiroaldactone (?) and it was always hard for her to walk, sit for too long, etc. bc of the tummy. She was also taking painkillers for the back and stomach pain caused by the extra weight/stretching of the skin.
Honestly, neither seemed to help as she her tummy and feet were huge 90% of the time. Some days it'd be a bit smaller, but always swell back up. I'm just assuming this will be a constant battle. It sounds like some people are on a dosage of diuretics that work well for them that they're tummy actually goes back down all the way? I asked the dr. about this and they said hers would probably never really be "flat" until after a transplant. She has a MELD of 25. She also has an umbilical hernia which pops out and is very painful.

hang in there! like rick said, there's really no where to go but up :)
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