ascites treatment/non compliance

[MelanieLu]

Hi Dr.K,
Having ascites gone from massive to moderate via 22 months diet/meds,sod.restriction,fluid mgmt. am aware of the body functions/lack of which cause this. Could you Dr.explain what damage occurs with not complying with above,or giving 100% to the day to day manangement of it, why it is very important?

Food,sodium,always there and tempting! I travel w/job and stay in hotels,restaurants,almost not possible to comply to the levels I can at home. Recently, have been in a hotel due to home remodeling(flood disaster) for a month,with a month or so to go,do carry w/me my unsalted butter,nu salt alternative,lo sod.salad dressing,know how food is prepared,ask if I don't,but it's a struggle. I'm in touch w/doc re: the challenges,but want to understand the progression or damage of ascites recurring, can feel and see a difference overnite sometimes.I'm trying to manage w/out increased diuretics,but have increased weight,not alarming but tougher by the day. It's possible on a short term to manage food, but long term, it's a juggling act.In short term situations, I am certainly limited and manage, but long term seems to be so difficult to manage. I need to understand this so I can strengthen my resolve and commitment.  I've done all I know, good ideas while traveling,but have been stopped at airports,carrying food on board,unsalted butter,etc. was taken away, as it was questioned f/testing, taking security to the levels which are now in effect in air travel. Small towns, even large great hotels, are not,in any way set up f/my restrictions.When I did get it thru, it would spoil, refr's and all not available always. Even stores nearby,impossible.

When ascites is present and it shows in weight,girth,etc.I sure know about but the damaging overall effects would help to know, please comment. Thank you Dr.
MelanieLu

[Kevin Pho, MD]

Hello - thanks for asking your question.

I congratulate you on your discipline.  It is certainly difficult but very important to maintain your regimen to control ascites.  

The effect of additional girth and weight are obvious factors to comfort and quality of life.  

Increasing ascites are prone to infection (known as spontaneous bacterial peritonitis - SBP).  SBP can lead to potentially serious complications including death if not properly treated.  

Other complications of ascites includes difficulty in controlling sodium, kidney failure, and problems breathing if the fluid buildup is large enough.  

Hepatic-hydrothorax is a condition where the ascitic fluid seeps into the pleural space (i.e. the space around the lungs) through minute spaces in the diaphragm.  This may cause a pleural effusion leading to a whole new world of complications and is something to be avoided.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[drmalik]

u should take no salt less protein . more fruits and vegetables along with some diuretics

[MelanieLu]

Hi Dr, thank you, no salt? I think your answer was not total, the question was 'what are the effects on the body' if ascites isn't managed. Your answer is a few words, rest missing, appreciate your taking a second look, sincerely, MelanieLu

[dixiedarlin]

I hope you don't think I am 'stalking' you!!  I read your latest posting and coincidentally I am a clinical dietitian!  I can tell you that your sodium limitation is one of the most important aspects of your nutrition treatment.  As you are aware- it works like a sponge in the body and causes you to retain fluid.  I don't know if your DR. advised a fluid restriction.....another tough thing to keep up with but usually if you try to only take in about the same amount your excreted (urinated) the 24 hours previously - with a limited sodium intake hopefully you can keep it under better control.  Be sure and ask your Doc though - I am giving you the 'general advice'.  If you are following the low salt part and not having fluid accumulation - you don't need to monitor the previous days output for your current days intake of fluids.  There are more drastic type procedures that can help with the fluid problem - a peritoneovenous shunt can be placed or paracentesis can be done.  Those are more extreme approaches to the situation......I wouldn't think you are any where near that stage.  Sodium is hidden in so many foods - I am sure you are up on the foods to limit/avoid - I won't bore you with all that.  This advice may be usable for short term problems with fluid - however - please still discuss with Dr. Kevin or your own Doc.  Every case is different and I just know the generalities of nutrition for Cirrhosis with ascites complications.  I just thought I would try to help you - you have been very kind to me......  :)  DD

[imkindly]

Hi MelanieLu
My husband dealt with ascites for over two years while awaiting his liver transplant. (He got his transplant and is doing well now!)
I can tell you that it's very important to keep your ascites as small as possible. Very important to keep it under control for as long as you can, as well as you can (with a low sodium diet and diuretics as prescribed)

The reason I say this is---
If ascites gets large, there's alot more complications that can happen.
For example----my husband developed an umbilical hernia, and then an epigastric hernia (from the pressure of all the fluid).
Later his hernia strangulated (a loop of his intestine got trapped in the hernia in his belly-button)----that was an emergency situation.
He also went through peritonitis (infected ascites fluid) more than once----that's also an emergency situation.
He also went into "sepsis" (from the peritonitis).

I'm not saying this to scare you (but they were all very scary situations). The main point I want to stress to you is to stick with the low sodium diet (I know it can be a hassle, but it is really really worth it! It makes a huge difference.)

One more thing----make sure that your doctor keeps a good eye on you (checks your blood tests regularly). You mentioned your BUN and Creatinine in your post below----those need to be watched closely because of the diuretics that you are taking.

Melanie, are you on Social Security Disability or Medicare? Medicare will pay for a liver transplant (at certain centers).

If I can be of any help to you, drop me a line :)
***@****

[dixiedarlin]

Another thought for you.......if your serum albumin is low - which it probably is with the ascites - a low albumin can cause the ascites.  You could check with your Doc about albumin replacements like 'dextran' or 'haemaccele' which are not as expensive as the IV replacements....... as I understand it.  When the albumin falls too low - one of the 'symptoms' is ascites.......so check into your level and see if a med could help...may be an answer to better management - check your meds to see if you have anything like it on your schedule......DD

[MelanieLu]

Well, what a wonderful way to wake up to read all the info I sought, such a big help, thank you all SO very much! If the situation wasn't so serious it would be funny, you'd have to have been there to see me, (probably on a watch list f/flying) over and over again. Dixie, EVERYONE needs a clinical dietician on the friendship list, I understand your info. IMK, you sure do get around and how lucky we all are to have you so involved in our midst.
Dr.K,perfect help, just what I needed to hear and know, the lung congestion has been a recent factor. I've learned more about cooking lo sod.than anyone I know,it's that travel and out of 'options',sometimes, but I'm going to have to get out of doing what I'm 'choosing to do', which is travel,it presents the biggest challenge, we've moved to two diff hotels over the food/rm service,cook/chef wouldn't pay attention to my needs in any way. NO ONE understands the lo sod.situation, no one in our everyday lives,so thanks again to you ALL for such great info!
I am on restr fluid,yes, that's a toughie, as they go! The home is nearly done (repair begins soon)it's been four months away, actually. Good news is I get to go shopping on somebody else. Imagine that, shopping w/out cost. A novel approach I say.

Albumin is 3.9,not sure that's low, the lab 'values' show it to be ok, but perhaps that's low?  One liter fl. pr day is difficult,but necessary. I need a texas hat, now have to find how to get one. Great advice! I call it the mexican hat dance.
I stayed in a hospital f/para and had serious complications then wound up in for a week, nitemare, so yes, the details are the devils of our diligence.Three days foll'g admission, WE, (that is the doc and I) found out the hospital doesn't have the capacity to serve lo sodium! My husband was literally cooking and bringing me the foods to help. It's not known, viewed as a 'concern' which not many have. (Unq)hospital dietician)

IMK RE: liver transplant, WELL, just what I've been wondering about as I'm not poor,but the medicals on my own have cost thousands and meds, etc. I always want to pay my own way,but transplant looks out of bounds, I would just have to 'cash in' the house/car/security totally, in order to pay for it. I've looked at sites in Belgium, and China, am told their liver transplant is 'not a problem' as their citizens are 'mandatory' to donate organs at death, China's prison population by the way, I'm told is among the healthiest in the world. Part of the 'rehabilitation'they believe in. I'll sure get to the source you speak of. I've asked my doc, he replies 'you aren't sick',facitious over the 'wait til you're almost dead to get a liver transplant in America', I guess. He says I know more about many 'ongoing' issues than he does. (Net, time) ha.

DD, please keep stalking me! I so appreciate your insights too. I considered seeking the help of one who does what you do,are we allowed to write privately-email or is it ok to write on the site? I have a lot to learn! I've looked at LaVeen, TIPSS and the facts are that the #'s show it to be no better outcome(as far as morbidity) than frequent para w/out the complications of tipss,plus costs. It's a different world w/out medical insurance, treated as tho it smacks of 'irresponsibility, believe me, had I known this was coming, I'd have made 'other arrangements'. Shocker #2. The USA today, corporate savvy.

I wonder about getting to see a hepatologist? Closest one is about three hrs away,Indianapolis,I'd travel anywhere,even when I phoned for an appt, asked about 2nd opinion, heps's cool receptionist,said I would need to post a 'cash/cashiers check' for $5000 in order to make apptmt.w/Dr.(Gupta)as he does all his own tests, won't use any others, even tho I explained they were all very recent by weeks,ct by a few months. No dice, he just doesn't want patients like me.I've seen this advice given and not sure how to do it,if the attitude is present before I get there.I think the world of my doc but wonder if he'd be ok about it, subtle situations, delicate and fear bad feelings. I know what he'd say, but the truth is not what he feels, tho he might. Am I overly worried? If a hepatologist is best,I'll do it. Just know I have torely on 'local talent' f/help,info,etc?

IMK, wow, bless you/hubby, that's a biggie! You're so very involved w/so many, giving your knowledge/help so freely and so (well,) kindly! When I was new to this 'world of my disease' the ins and outs/as it were,my hairdresser mentioned his wife had a liver transpl. went on to show me her photo in a bikini, lovely lady, right after the transplant,the mercedes scar. I almost lost consciousness..knees buckled,I went down, didn't faint, but lost my 'legs',thought, I cant do this,it just took my breath away.I didn't tell him about me,he said his wifes Dad was a doc or she'd never have gotten it..waaaaaa, is how I felt so gave up the notion, tho my husb and sisters never did.I'll do as you suggest, begin at the beginning,any info appreciated!

My sisters,4 of them,gathered around me when this all occurred to offer a living donor transplant from them to help.(before we all knew much,) None would qualify, as I'd come to find out, given their health sit's but it enhanced my life to hear them.My neices/nephews then came forward offering the same..my doc frowns on it, due to the 'high mortality' of donors,requiring a longer time to work out. (Not that any hosp would help me do this w/out ins.)Several suspended the procedure, I heard on CNN. recently.

Well, better stop before I use up all the kb's on the site! I'll keep checking in here, well as the liver support forum,you all just gave me so much today, I can thank you by promising that I'll pass on some really good help to those out their in need, anyway I can as their are so many. Pass it on, I say. It will make the difference to so many. Smiles,thanks galore to you all! Lucky MelanieLu