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Posted 4/9/2012 5:47 AM (GMT 0)

Hi Everyone, I have just found this website and this is my first post. I was looking for good advice from others experienced with ascites. I have stage 4 fibrosis (cirrhosis) and recently about two weeks after being in a coma / ICU from other surgical complications I got ascites. I was put on Aldectone 50mg and told to cut out salt. I have been very diligent with diet (only eat protein, fruit, veg, some bought bread) - nothing from boxes, packets or jars. By 14th March an ultrasound showed the ascites was gone so I ceased my meds. However, even though I remained very strict with diet - about a week ago my belly began again to become distended, my wieght and girth increased. In fact three mornings ago when I got up in the morning my entire abdomen was so distended and tight as a drum, I was short of breath and what I was most worried by was that my belly button seemed to be poking out a bit and was very painful. It was so intense I thought something might tear. Across the day it eased and the next day was improved but by evening was advised to go to ER for assessment. They tookx-rays to ensure no fluid in the lungs - but chose not to do ultrasound scan, said they could tell by sound when thumping my abdomen that I definitely had fluid - and simply prescribed Aldectone again. This is my question to anyone who might be able to help or even give me some general advice - my being so new to this.

The Aldectone prescription was for 22mg a day when previously I responded to 50mg. The ER registrar was not a specialist - just rang the hepatologist who advised him. I explained that I thought the 200 seemed high, that I didnt want to take a dose higher than necessary and suggested that the Hepatologist (who hadnt seen me) who didn't approve the scan to cut costs - might simply be prescribing a high dose to cover themselves because they hadnt measured how much fluid was there. The ER registrar seemed a bit uncomfortable when I said this - he said that the idea of the high dose was to really knock the ascites on the head as quickly as possible and prevent any collateral damage, and that I could see my GP after the easter break to then get it reduced if the ascites was improving. My stomach distension I reminded him was already minimally improved that day and I would have preferred to take a lower dose med, increasing if required - as I had with my first ascites event. I left - and have taken only 50mg each morning - and my condition is slightly improving. A local Dr I spoke to yesterday morning couldnt see any need for the higher dose if I was slowly improving - but she is not a specialist - but did see me and my abdomen.

Sorry this is such a long post. Im just wondering with all the actual, real personal experience people here have had - and their knowledge of each others past experiences - Does anyone here know whether there might be any reason  for me to be taking the higher dose of Aldactone - is there any added value in a short period of higher dose - if my condition is slowly improving with the lower dose.       

Posted 4/9/2012 1:07 PM (GMT 0)
Not sure about the dose of aldactone, but bread has a fair amount of salt.
Posted 4/9/2012 5:49 PM (GMT 0)
Hi, Yarrow, and welcome to the forum. I'm dealing with the same problem right now. I had some abdominal surgery on March 14th, related to liver transplant last Oct. After this 2nd surgery, I blew up everywhere--tummy, legs, feet, one forearm and one hand. This started while in the hospital and they gave me IV Lasix 60 mg. Prior to that, I had also been on Aldactone 50 mg after transplant, but that was stopped about 3 mos. ago. I was told that it was raising my potassium level. Since discharge from hospital, and with the amount of swelling I still have, I am on 40 mg of Lasix orally at home. This really doesn't seem to be helping much. I understand your frustration.

I was told to stay off my feet and to keep my legs elevated--difficult, as I don't have a recliner and live alone.

Are you being seen at a transplant center or seeing a hepatologist? What is your cirrhosis from? If it's from alcohol abuse, I'm sure you know you have to cut that out entirely...and never have another drink.

BREAKING NEWS: As I was reading over other posts, I felt something wet. I looked down and the front of my shirt was wet. There is a thin, slightly pink watery discharge coming from one of the incisions that has a staple. With my ankle/feet sores healing up, I guess the fluid has to go somewhere. What a nuisance, though! This is in the midriff and I'm using sanitary napkins again as there is a lot of fluid! I'm wondering if this will ever end!

Hugs,
Connie
Posted 4/9/2012 6:18 PM (GMT 0)
Yarrow,
  My hubby has ESLD (and is now in a nursing home) and once (over a year ago) he had to have the  fluid (ascites) drained from his stomach and he has had to remain on the meds, or he will swell up again.  After the pain he went through for the first draining...needle in belly...he just never wants it done again.

Although he has opted not to get evaluated for a transplant, he does treat with the transplant team, and they have told him to continue the meds to keep ascites from occuring again.  They told him his body just does not have the ability to get the fluid out without the meds.

This is just our experience.  He has been on the meds to keep fluid from building up for over a year now, and has never had to have fluid drained since that first time.

Meds he now takes:

Lasix tabs 20 mg  2x daily
Spironolactone tabs 100 mg (5x a week, with none on Sat or Sun)
   [for ascites. We found if he took one every day, after two weeks    he had tremors too bad to even hold his fork, but with the
   two day break,  it seems to let his body get a chance to clear
   the meds enough so he doesn't have side effects]

Fentanyal transdermal patch  100MCG every three days (for chronic pain)

Lexapro tab 10 mg 1x a day (for depression)

Lactulose 45ml 2x a day (for constipation NOS)

Miralax Powder 100% solution  17 grams 1x a day (for constipation NO)

 

Besides the above, Dr. prescribed that he drink two 24 oz. sized milk shakes a day, made up of ice cream and whole milk, which helps with the constipation problem, and has kept him from having to up the lactalose.

 

Hope some of this information may be helpful.  My hubby has had no hospitalizations and only one fluid draining outpatient procedure.  But..he has HE pretty badly...or is out of it mentally because of the painkiller..it's hard for me to tell.

Angie1953

Posted 4/9/2012 8:40 PM (GMT 0)
Try giving him more lactulose, it might help with the HE.
Posted 4/10/2012 2:09 AM (GMT 0)
Thanks David, Hep and Angie - I so much appreciated hearing from you. I live alone and its good to be able to communicate with others, who understand, around these issues. I have till now been on a Hep C forum but most of the chat there is around treatments, not so much sharing for my more advanced situation. 

To answer your question Hep - alcohol (while I hit it a bit earlier in my adulthood) has never been a problem and something Ive rarely indulged over recent years. My cirrhosis is due to a longstanding (close on 40 yrs) Hep C condition. Because of the ascites ost recent surgery/coma - Im no longer eligible for Hep C treatment and referred to transplant unit. However the referral states my case is not urgent (which means I probably wont even hear from them for assessment for at least 12 months - and my condition and any symptomatic management is still being provided by the referring local major hospital Hepatologist. Unfortunately, for many reasons my "relationship" with him is "strained".

Hep your situation sounds worrying - leaking fluid is not a good sign - don't you think you should be presenting back to your hospital for treatment to address this. Apart from any volume complications - infection would surely be a vulnerability. Have you actually had a liver tx. ?. Public consciousness raising has been largely overlooked in my country until last two years and livers are scarce - at my late age it is unlikely I will be listed as sufficient priority or offered one before I reach the age eligibility cut off.

David you are correct about the bread salt content - it took me too long to realise it - in fact I think it was the bread which caused this recent problem. I became so tired of just eating meat/fish/eggs and veg with no additional flavour - when I found a really excellent brand of gluten free bread which tasted great toasted with non salt butter - I overindulged. Salt content of bread didn't occur to me - I should have realised why I was enjoying it so much. Last supermarket trek, I checked the "ingredients" list and realised.

Angie  It is so sad when one's partner becomes affected cognitively - at least with primarily only providing physical care you still have the interpersonal companionship, with HE, if it becomes more severe - that mutual sharing is also compromised. As advised by David, my reading of ESLD is that lactulose beyond normal gastric aid - significantly assists with HE. Unlike the pharmacy anti constipation products, however, it might be advisable to have serum ammonia levels checked by Dr. and have a prescibed source with dosage recommendations. Angie do you know whether it was the Lasix or the Aldactone which caused those "shaking" side effects for your husband ?

On closing - I am checking serum potassium levels and have arranged appointment with my GP tomorrow to discuss my Aldactone dosage - and arrange ultrasound. Good to meet you all. regards Yarrow   

Post Edited (yarrow) : 4/9/2012 8:13:35 PM (GMT-6)

Posted 4/10/2012 2:38 AM (GMT 0)
Yarrow,

  It was not the lasix, it was the spironolactone.   The other side effect was difficulty swallowing, but once we cut down the spironolactone to only 5 x a week, instead of 7 x a week, the side effects pretty much went away.

  Yes, the lactalose helps with HE.  I can tell if a recent BM has happened as he makes more sense.  Some days the HE is bad and another day not so bad.  Just depends..

   My hubby also has ESLD as a result of long standing Hep C.  May I ask what your coma was caused from?  I constantly am concerned about him lapsing into a coma and me just thinking he is sleeping.

Angie1953

Posted 4/10/2012 3:09 AM (GMT 0)
yarrow,
"alcohol (while I hit it a bit earlier in my adulthood) has never been a problem and something Ive rarely indulged over recent years." Any alcohol is deadly for Hep C patients. Just so you know, I never was a big drinker, and when diagnosed with the virus 11 years ago, that was it, no more drinking. Zero.

Your hepatologist: "Unfortunately, for many reasons my "relationship" with him is "strained"." Why? Are you not listening to them, or is it something else.

Prior to my liver transplant, I had problems (5 years) with HE. My ammonia levels were checked monthly and my hepatologist prescribed 30 cc. of lactulose, twice a day. There were days when that wasn't sufficient, so the doc told me to take more, as needed. That worked very well and some days, my dose was double the norm. It did the trick. Spending a lot of time on the toilet was preferable to being goofy and out of it.

I underwent the interferon/ribavirin therapy in 2004, three months after finishing it, had a cerebral hemorrhage, recovered pretty well and my liver got worse and worse. In July 2009, my MELD score went from the mid-teens to 18 and a week later 24. I received a call three days later and received a new liver. There have been a few problems, such as the Hep C viral load jumping last year. I just finished the interferon/ribavirin a couple of months back and so far I'm clear. Also had Lyme Disease right before beginning the therapy, but that was taken care of with antibiotics.

What part of the country/world are you located in? Some places are easier to get a transplant than others. States without a motorcycle helmet law tend to have more deceased livers available.
Posted 4/10/2012 3:38 AM (GMT 0)
Yarrow, I stated in my original post that I had a liver transplant in Oct., the 27th to be correct. Mayo docs and other staff are well aware of my problems with fluid retention and draining. I just finished up an antibiotic Rx this evening. Since this latest draining started this evening, they are not aware of that, but I'll give a ring tomorrow and let them know....though there's not much they can do. As mentioned, they do not want to do a paracentesis and I'm already taking 40 mg of Lasix every morning. I have been involved with Mayo's Transplant Team since 2006. I'm in my sixties. They don't have a limit on transplant age, but they don't want caregivers older than 70.

Hugs,
Connie
Posted 4/11/2012 1:21 AM (GMT 0)
Yarrow - My mother has recurring bouts of ascites and takes many, if not all of the meds already listed in previous posts. However, my mom also has the paracentesis done fairly regularly to relieve the discomfort. The paracentesis is the needle in the belly that drains the fluid. If you have not had one yet you may want to ask about it.

Sara
Posted 4/14/2012 12:15 AM (GMT 0)
nono  My problems with fluid retention continues. After 2 and a half, going on three years I have taken my meds and tried to keep honest with my very low sodium diet. I saw my hepatologist on 12/02/11 and my weight was around 192 pounds. Six to eight months previous to that I was trying to keep my weight under 190. My doc said in December that my muscle mass was coming back and according to the physical he gave me like pinching the ankles and pressing around the abdomen area that it seemed there was little edema and ascities. He gave me the green light that I could afford to gain another 5 to 10 pounds as long as it was muscle weight up in the upper arms, neck and shoulder area. Then I saw my PCP at the end of March and my weight was up to 203 pounds. I was concerned about it, because it seemed I had been gaining 2 to 2.5 pounds a month and then jumped up to 4 pounds and he checked me out and e-mailed my hepatologist saying there still is not a lot of edema or ascities and I should try to keep my weight under 205. I got home and called the hepatologist and said I was uncomfortable with my spike in weight plus my last 2 LFT's were showing ALT and AST were over 200, closer to 300. He did not seem to care about it, but did have me do a 24 hour urine test and the results were 78 MEQ/TV for sodium timed urine, normal range 40-220. I do not know what that means! After that I went to 207 and now he is jumping my Furosemide to 120 mg's and 300 Spiranolactone to attack the problem aggressively.  Is my liver disease getting worse? Most of the the fluid is ascities in the stomach and groin area. My legs, ankles and feet are not bad. Sometimes a little tightness in my right leg. I hope this comes off as quick as it went on. 9 months ago my weight was 183 at it's low point and I thought I am too skinny.  Hope the meds work! I would feel much better at 195 to 200.
Posted 4/14/2012 1:53 AM (GMT 0)
Mike, you have a long-standing history of fluid retention, and I think it's just as you mentioned: They are acting aggressively in order to prevent this from becoming a daily problem again.

I am finally having a paracentesis next Tues. I've had belly bloating for months and now worse than ever before. The surgeon thinks it's between the skin and the mesh, not in the abdomen. I'm worried about pain and also about it being a very temporary solution.

Hugs,
Connie
Posted 4/14/2012 3:33 AM (GMT 0)
Connie , Having the procedure done was about the pain level of a bee sting for me . The only real discomfort was repositioning myself to insure they had gotten most of the ascites . Hope you feel better once it's done and the meds kick in so another one wont be needed .



A. Ziffle
Posted 4/14/2012 3:45 AM (GMT 0)
Thanks, Rick. I had just tried to track down your e-mail addy as I am concerned with the pain involved in a tapping. What I experienced yesterday with lancing was pretty bad.

Hugs,
Connie
Posted 4/14/2012 2:57 PM (GMT 0)
cool  I had 3 paracentisis and the pain level was like Rick said, a quick bee sting that does not linger. For me it was a big relief to have it done. They usually take about 4.5 liters of fluid which added up to 10 to 12 pounds of fluid loss. I do not know what a paracentisis would be like after a transplant. I would think that getting stuck with anything might hurt a little bit seeing the abdomen area is so tender. Just think of the relief you will have. It will be worth the pain! Dealing with fluid retention is a pain. You know I have not had an Italian sweet sausage in over 2 years. Constant sodium watch in everything consumed. Same boring meals every day. The 1st 6-8 hours of my day, I have to be near a toilet because of all the urine passed.  It is not easy excepting this crap!
Posted 4/14/2012 6:22 PM (GMT 0)
Mike, actually it's the opposite: My abdomen is numb around the incisions done for transplant, rt. lobe excision, and hernia repairs in the midriff. When I had that open sore in my midriff, it didn't hurt because it was numb. However, the procedure on my shin hematoma Thurs. was excruciating. Hopefully, the para area will also be numb--that would be great! I'm just not a fan of pain.

Given your calculations, I would say I have about 6 lbs. of fluid remaining, mostly in abdomen but a tiny bit in my rt. thigh.

Hugs,
Connie
Posted 4/15/2012 3:08 AM (GMT 0)
Connie the good news it's not like trying to hit a vein . I was not happy about it initially but as Mike said it was such a relief to get the fluid out it outweighed just about any amount of pain they could have caused with a needle . For me it was psychological , They made the mistake of going into detail about the procedure in typical medical terminology a few days prior . I worried myself crazy about a 2 foot long needle the size of a pencil with a water hose attached to it and wielded by Dr. Frankenstein smhair !!! You've seen alot worse and definitely more painful , You'll be fine .



A . Ziffle
Posted 4/15/2012 4:12 AM (GMT 0)
Thanks, Ziffle.

Hugs,
Connie
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