Anyone else have very difficult ascites?

[helpingout]

My elderly relative has alcoholic cirrhosis (although he's been dry for 7 years) and a very low MELD of 8 to 10, but yet he has bad ascites that requires draining every 2 to 3 weeks, as well as painful edema.  He can barely eat anything.  He says it just feels like everything is about to come back up.  :(  Currently he's surviving on liquids (Ensure, blender shakes, OJ) and the occasional homemade oatmeal raisin cookie.  I know, not the healthiest diet, but it's that or watch him waste away.

He has not been smart about his meds.  Now that we've gotten involved we're trying to correct his diuretic dosage, make sure he's taking his blood pressure meds (propranolol) as prescried, etc.  We're restricting sodium.  We're encouraging more liquid consumption (as opposed to dehydration).  We push exercise but he doesn't.  We're considering TIPS.

Does anyone else have a similar problem?  Are there any things I'm overlooking that might help?

[Dee1956]

This is great news!  Thank you so much for letting us know how he is doing.
You are really nice to be helping him.
I hope he can stay on this plan so he will improve.
D

[Sevetts]

That is great news.  I'm glad he's doing better.  keep up the good work.  :)

[helpingout]

In case anyone is curious, doubling my father-in-law's diuretics (to 50/20) has helped.  We're also keeping his sodium levels firmly in check--they recently tested on the low end of normal.  His last paracentesis was only 2.5 L instead of the previous 4 or 5 L!  They're going to try doubling diuretics again (to 100/40) and see what happens.  He's also been taking his propranolol mostly regularly.  (Sometimes he goofs, even with the pill case we bought him.)

Summary: taking your meds and diuretics as prescribed really does help.

[Advocate1955]

Wow, that's great news that there will be a second transplant center in Washington state!  So glad to hear you got into a hepatologist and they are switching up his diuretics and monitoring him.  
Best wishes,
Advocate1955

[helpingout]

Hector,

We managed to get in yesterday with the hepatologist!  He's now on 20/50 of diuretics.  In a week we'll see if he can go to 40/100.  If not, then the doc wants to talk TIPS.  Since it seems to be a choice between TIPS and wasting away, we're on board with that.

[helpingout]

Advocate1955,

They're just starting up a transplant program; our doctor said they've done 25 livers so far.

We did in fact call and request a new appointment, and by luck there was a cancellation!  We were able to get in yesterday!

[Advocate1955]

Hi helping out,
I'm pretty sure Swedish does not have a transplant center do they? That means that if he required a transplant, they would have to.refer him to UWMC or Portland anyway. You may want to look into transitioning ahead of time, so that he's already established.
Take care.
(We're neighbors almost. We're in the south end).
Advocate1955

[helpingout]

Hi Advocate1955,

We have mixed feeling about Swedish's liver center.  I really like the nurse coordinator, the dietician, the head doctor, and anyone else I've been able to talk to.  But sometimes you call, leave a message, and no one ever calls back.  Plus there's this runaround with his next appointment date.

I'm not sure if I'm just bumping into a few bad apples in the staff or if it's a more systemic problem.

We'll keep UW in mind if we can't get the service level resolved.   Thanks for the recommendation.  :)

[Advocate1955]

Hi Helping out,
We love the Liver Care Clinic at UWMC. They have a liver transplant center there and a whole team of transplant specialists. We've been going there for 3 yrs since my husband was diagnosed w cirrhosis. We are already in the clinic that we want to be in should my husband's liver begin to fail. I highly recommend this clinic.
Advocate1955

[Dee1956]

I am so sorry I did not mean to ignore you. I got lost...brain fog ?:)
I was responding to the wrong person
So sorry
Good luck
Dee

[Dee1956]

Hi I wonder if he could be the type of person who's body holds on to salt?
My salt level is always high, I never add salt to my food..however when my Mom had to go on a salt free diet due to a heart blockage we found that there is salt in every thing.  Even milk.  It was very difficult for her to go on this diet, it is called "The Rice Diet" She went to Duke U and lived there to learn how to eat, how to do everything and she did not have to have the blockage removed.  Her body did it for her

Saying all this I have diabetes, I do a lot of research.  I found that while salt makes you hold on to fluid...sugar makes the body hold on to salt.
Just wanted to mention this in case it might help your Dad.

I don't have medical info to back it up but I am sure I can find it by searching for "sugar makes body hold onto salt"

My best to you, you are doing a great job with your Dad.  Dandelion is good for reducing fluids.  Is he drinking enough water?  If  you don't drink enough water you body will hold on to it.

I also drink a tea called Essiac which I obtain from the Herbal Healing Academy.  I have been with this company for over 10 years.  The naturopath who runs it takes questions from members (you can join for free) every Wednesday, she is very knowledgeable, very helpful.
She take questions from 10 to 1 mountain time.

Best of luck to you
Dee

[helpingout]

Hi nursegill,

Thank you for your suggestions.  I'm so glad your dad has no sign of ascites.  It's quite the nightmare to live with!  Keep up the good work.  :)

[helpingout]

Hi Advocate1955,

We are on the eastside.  My father-in-law chose the Swedish Liver Center.  How are you liking the UW Liver Care Clinic?

Very good advice.  I will give that a try.

-Aspen

[Advocate1955]

Hi helpingout,
I see you live in Washington.  Where do you live, and where is your husband's hepatologist?
We live in Seattle, and my husband's hepatologist is at the Liver Care Clinic at the University of Washington Medical Center.
It sounds like balancing his sodium and his diuretic could be quite a tricky thing with not only with his diet, his medications, and the ascites, but also with the kidney issues.  If it were me, I would call the hepatologist's office and let them know that 2 weeks is too long to wait to be seen given that he is having difficulties with ascites and only one kidney.  Hopefully, even if he can't see his hepatologist, maybe he'll be able to see another hepatologist in the practice.
Keep us posted.
Advocate1955

[helpingout]

Hector,

It's complicated.

We were supposed to see the hepatologist (liver doc) a week ago, but they rescheduled literally the morning of the appointment.  Then they rescheduled us again on Friday.  Now we won't see them until July 15.  It's driving us crazy!

He has only one kidney, so roughly half the renal function.  Diuretics may need to be half the "normal" dosage.  He hasn't had the spironolactone dosage confirmed IN PERSON by a doctor and so he is only taking furosemide.  We have a nephrologist appointment this Friday; hopefully the diuretics will be finalized after that.  I believe they were going to try furosemide 20mg and spironolactone 50mg.  More than that gets his kidney up at creatinine 1.25 or 1.27 (assuming what he told us is correct.....what he has told us about the period before we got very involved in his care is sometimes misremembered or he just doesn't think we need to know all the details).

Sodium: I calculate he's around 1500-1700 per day, maybe occasionally up to 2000 mg.  Recent blood work showed him at the top end of the "normal" range for sodium.  I could cook for him with much lower sodium levels, but he just can't each much that's not liquid.  Guess I'll start putting meals in a blender for him.  =/

Thank you for the warning on ascites after TIPS!  I wasn't aware that could happen.

And thank you for being so active on the board.  I hope you get a new liver soon!

[HectorSF]

He is either not compliant with sodium intake or taking too little diuretics.Assuming he doesn't have other conditions of diseases and is not very ill.  Ascites is usually controllable in the vast majority of patients.

What do his doctor say?
It is up to the liver doctor to help him manage his ascites.

If someone takes too much sodium it will over ride and diuretics. So that would be the first reason.

Secondly what is his dosage of Spiro and Furo? 100 to 40 or something like 400 to 160.
Has the doctor modified it?

Very few people have uncontrollable ascites until they are very ill and near transplant. A MELD score of 8-10 indicates a reasonably healthy cirrhotic. Below 6 is normal.

Also if he is not compliant now, even after TIPS the same thing will happen.
There is no substitute for compliance with meds and diet.
----------------------------------------------------------------------------------------------
AASLD practice guidelines Ascites

Development of ascites as a complication of cirrhosis is associated with a poor prognosis. Liver transplantation should be considered in the treatment
options for these patients.

Recommendations

7. Patients with ascites who are thought to have
an alcohol component to their liver injury should
abstain from alcohol consumption. (Class I, Level B)
8. Baclofen can be given to reduce alcohol craving
and alcohol consumption in patients with ascites in the
setting of alcoholic liver disease. (Class IIb, Level (C)
9. First-line treatment of patients with cirrhosis
and ascites consists of sodium restriction (88 mmol
per day [2000 mg per day], diet education,) and
diuretics (oral spironolactone with or without oral
furosemide). (Class IIa, Level A)
10. Fluid restriction is not necessary unless serum
sodium is less than 125 mmol/L. (Class III, Level C)
11. Vaptans may improve serum sodium in
patients with cirrhosis and ascites. However their
use does not currently appear justified in view of
their expense, potential risks, and lack of evidence of
efficacy in clinically meaningful outcomes. (Class III,
Level A)
12. An initial therapeutic abdominal paracentesis
should be performed in patients with tense ascites.
Sodium restriction and oral diuretics should then be
initiated. (Class IIa, Level C)
13. Diuretic-sensitive patients should preferably
be treated with sodium restriction and oral diuretics
rather than with serial paracenteses. (Class IIa,
Level C)
14. Use of angiotensin converting enzyme inhibitors and angiotensin receptor blockers in patients with
cirrhosis and ascites may be harmful, must be carefully
considered in each patient, monitoring blood pressure
and renal function. (Class III, Level C)
15. The use of nonsteroidal anti-inflammatory
drugs should be avoided in patients with cirrhosis
and ascites, except in special circumstances. (Class
III, Level C)
16. Liver transplantation should be considered in
patients with cirrhosis and ascites. (Class I, Level B)

Hector

[nursegill]

This is what we do for my father.
My dad has 2 glasses of dandelion leaf tea a day. This helps his to flush his lymph glands out and keep him flowing. Please make sure you talk to your Dr. It may not be good for everyone. I also use a machine called neuro care and this helps to keep your blood flowing to your organs and also helps with edema and circulation in your legs. This is great for your heart and to help make your muscles work better to create more blood.  My dad has stage 4 cirrhosis and has no sign right now of ascites . We do get a little edema every couple of days. I use the neuro care everyday on him to keep it under control. So far so good. I think between the 2 of these items it keeps him peeing all the fluid he takes in out. His weight will stay the same for 4 or 5 days and then may go up 1or 3 lbs. At that time I will make him do a detox bath for the liver and then drink more tea.  In a day or 2 we are back down to the weight we were. I don’t know if your friend is counting his or her intake or output but his is very important to keep track of. We keep a journal of everything every day. Then you can see what works and what doesn’t.
Wishing you the Best.