OtherGround Forums Anyone dealing with Refractory Ascites?

Edited: 12 days ago
7/24/15
Posts: 5786

Hello OG,

This might be a long shot, but I was curious if any of our forums members have experience with refractory ascites in patients with advanced or end stage liver disease.

Refractory ascites is defined as ascites that does not recede or that recurs shortly after therapeutic paracentesis, despite sodium restriction and diuretic treatment. To date, there is no approved medical therapy specifically for refractory ascites.

I appreciate anyone who might be able to shed some more light on how you or possibly someone you might know help manage it. 
 

Thank you!

12 days ago
5/14/10
Posts: 8908
I have ascites but I don't know if it's the same thing as what you are talking about. I got it because I used to have hep C and my liver is fucked up from it. Right now it is almost unnoticeable but there have been times when it's caused me a lot of problems.
12 days ago
3/7/03
Posts: 7966

I don’t have a refractory period ...if I’ve popped a viagra

 

;)

Edited: 12 days ago
7/24/15
Posts: 5787

I appreciate your reply friend. What I’m dealing with is ascites that causes a lot of fluid buildup in the abdominal cavity that has to be drained through a procedure called a paracentesis. Over the last two months I’ve had it done 4 times and the latest one was 10.4 litres drained. It seems to be recurring a lot more often now that I had to have emergency surgery to remove my gallbladder. 
 

Mine was due to alcohol abuse over the last 10 years which resulted in alcohol induced hepatitis and end stage liver disease. I have been sober since it all started in February however I have been admitted to the ICU on 4 occasions since then and am working on being added to the liver transplant list. I should have probably included this information into the OP.

 

I was hoping to get some suggestions or experiences from people who might have similar health issues and what might help with their quality of life outside of what my doctor and hepatololist are able to recommend. Thanks again!

Edited: 12 days ago
10/23/05
Posts: 4480

Hey man. Sorry to hear that.

When ascites becomes a chronic problem, needing recurrent removal, then it usually means that your liver is in bad shape. I'm sure your hepatologist has already said all of this but the main points:

-Drastically cut back salt (less than 1gm per day)
-Cut fluid to less than 1.5L per day (1L if you can manage it)
-Use diuretics (which I assume you're already taking).



Sometimes, hepatologists will perform a TIPS procedure or a shunt to derivate the ascites away from the abdominal cavity. That may alleviate ascites in selected candidates.

There are plenty of other things, like which type of protein, vaccination, ulcer protection, but the 3 above will help the ascites problem.

However, my biggest suggestion is to keep in shape, exercise every day, stop smoking and all drugs (if you do). And obviously keep 100% abstinent from alcohol. Why? Because you will need a liver transplant. Most likely sooner than later. And depending on where you live, they might arbitrarily negate you that opportunity if they feel you're not a perfect candidate. A lot of candidates and few livers unfortunately. So put all chances on your side and be the best candidate possible.

Good news is that liver transplant nowadays is a lot simpler than even 10 years ago. The medications are better targeted. And many who do get one live a pretty good life.

You can PM anytime. Keep your head up buddy. And good luck to you, you got this.

Edited: 12 days ago
7/24/15
Posts: 5789

I really appreciate your reply Mataleo1. It really is helpful. I’m on diuretics currently and plan on asking to see why the haven’t been adjusted as of yet. I also limit sodium all together and usually am under 500mg daily. I have not considered drinking less fluid however I think it’s naturally very low now due to the buildup I deal with. I am interested in hearing more about the TIPS shunt you mentioned, as I have seen that as an option based on my own research. I am also planning on asking about a peritoneal cather for long term use to drain at home if you possibly have heard about that. Are there other things I should be looking at and evaluating to manage the ascites outside of this? Mainly being to expand on the protein type etc? 
 

Excersizing daily has probably been the area in which I have to most problems trying to stick with consistently. The pain and discomfort of the ascites is tough to be active with, but I’ll definitely work on doing better there as well. I have lost 90lbs over the last 8 months without actually putting much effort into trying to do so. I have also stopped all smoking and marijuana intake as well. You nailed it on the head with the transplant point, definitely doing everything I can regarding my MELD score to try to become the perfect candidate. 
 

Thanks again for your reply, I definitely plan on shooting you a PM. 

12 days ago
10/23/05
Posts: 4481
Fold me like one of your lawn chairs - 

I really appreciate your reply Mataleo1. It really is helpful. I’m on diuretics currently and plan on asking to see why the haven’t been adjusted as of yet. I also limit sodium all together and usually am under 500mg daily. I have not considered drinking less fluid however I think it’s naturally very low now due to the buildup I deal with. I am interested in hearing more about the TIPS shunt you mentioned, as I have seen that as an option based on my own research. I am also planning on asking about a peritoneal cather for long term use to drain at home if you possibly have heard about that. Are there other things I should be looking at and evaluating to manage the ascites outside of this? Mainly being to expand on the protein type etc? 
 

Excersizing daily has probably been the area in which I have to most problems trying to stick with consistently. The pain and discomfort of the ascites is tough to be active with, but I’ll definitely work on doing better there as well. I have lost 90lbs over the last 8 months without actually putting much effort into trying to do so. I have also stopped all smoking and marijuana intake as well. You nailed it on the head with the transplant point, definitely doing everything I can regarding my MELD score to try to become the perfect candidate. 
 

Thanks again for your reply, I definitely plan on shooting you a PM. 


No problem dude. You already seem to have a good knowledge base. And a very good attitude. A few points:

-As you may know, it's not only the salt you add yourself. Commercial broths and soups for example have a tremendous amount of salt. Even V8 has a lot. So count everything you take in.

-I'm a little surprised they haven't mentioned the TIPS or other types of shunts, given you're followed by a hepatologist. Not everyone does it, and there are some risks (especially if you've had encephalopathy), but it's helpful for some. And yes, a peritoneal catheter for drainage may help but keep in mind you have to be extremely clean and dilligent with sanitary procedures. If you're not careful, the risks outweigh the benefits.

-Weight loss: was it fat or muscle? Make sure it's not muscle wasting.

Edited: 12 days ago
7/24/15
Posts: 5790
mataleo1 -
Fold me like one of your lawn chairs - 

I really appreciate your reply Mataleo1. It really is helpful. I’m on diuretics currently and plan on asking to see why the haven’t been adjusted as of yet. I also limit sodium all together and usually am under 500mg daily. I have not considered drinking less fluid however I think it’s naturally very low now due to the buildup I deal with. I am interested in hearing more about the TIPS shunt you mentioned, as I have seen that as an option based on my own research. I am also planning on asking about a peritoneal cather for long term use to drain at home if you possibly have heard about that. Are there other things I should be looking at and evaluating to manage the ascites outside of this? Mainly being to expand on the protein type etc? 
 

Excersizing daily has probably been the area in which I have to most problems trying to stick with consistently. The pain and discomfort of the ascites is tough to be active with, but I’ll definitely work on doing better there as well. I have lost 90lbs over the last 8 months without actually putting much effort into trying to do so. I have also stopped all smoking and marijuana intake as well. You nailed it on the head with the transplant point, definitely doing everything I can regarding my MELD score to try to become the perfect candidate. 
 

Thanks again for your reply, I definitely plan on shooting you a PM. 


No problem dude. You already seem to have a good knowledge base. And a very good attitude. A few points:

-As you may know, it's not only the salt you add yourself. Commercial broths and soups for example have a tremendous amount of salt. Even V8 has a lot. So count everything you take in.

-I'm a little surprised they haven't mentioned the TIPS or other types of shunts, given you're followed by a hepatologist. Not everyone does it, and there are some risks (especially if you've had encephalopathy), but it's helpful for some. And yes, a peritoneal catheter for drainage may help but keep in mind you have to be extremely clean and dilligent with sanitary procedures. If you're not careful, the risks outweigh the benefits.

-Weight loss: was it fat or muscle? Make sure it's not muscle wasting.

I shot you a PM as well. It’s actually both, I was overweight when this started but had quite a bit of muscle as well. I’m pretty malnourished at this point. I’ve been told to try and stick with plant based protein and I do daily, however I also like to eat a lot of salmon and lean chicken and pork to try and help there as well. I usually gain about 20 up to 30lbs of fluid before each drain. I also eat as much fruit as possible and cut out fat and sugar. Oh and no red meat anymore as I was told to avoid it. I miss the hell out of it. 

12 days ago
10/23/05
Posts: 4482
Fold me like one of your lawn chairs - 
mataleo1 -
Fold me like one of your lawn chairs - 

I really appreciate your reply Mataleo1. It really is helpful. I’m on diuretics currently and plan on asking to see why the haven’t been adjusted as of yet. I also limit sodium all together and usually am under 500mg daily. I have not considered drinking less fluid however I think it’s naturally very low now due to the buildup I deal with. I am interested in hearing more about the TIPS shunt you mentioned, as I have seen that as an option based on my own research. I am also planning on asking about a peritoneal cather for long term use to drain at home if you possibly have heard about that. Are there other things I should be looking at and evaluating to manage the ascites outside of this? Mainly being to expand on the protein type etc? 
 

Excersizing daily has probably been the area in which I have to most problems trying to stick with consistently. The pain and discomfort of the ascites is tough to be active with, but I’ll definitely work on doing better there as well. I have lost 90lbs over the last 8 months without actually putting much effort into trying to do so. I have also stopped all smoking and marijuana intake as well. You nailed it on the head with the transplant point, definitely doing everything I can regarding my MELD score to try to become the perfect candidate. 
 

Thanks again for your reply, I definitely plan on shooting you a PM. 


No problem dude. You already seem to have a good knowledge base. And a very good attitude. A few points:

-As you may know, it's not only the salt you add yourself. Commercial broths and soups for example have a tremendous amount of salt. Even V8 has a lot. So count everything you take in.

-I'm a little surprised they haven't mentioned the TIPS or other types of shunts, given you're followed by a hepatologist. Not everyone does it, and there are some risks (especially if you've had encephalopathy), but it's helpful for some. And yes, a peritoneal catheter for drainage may help but keep in mind you have to be extremely clean and dilligent with sanitary procedures. If you're not careful, the risks outweigh the benefits.

-Weight loss: was it fat or muscle? Make sure it's not muscle wasting.

I shot you a PM as well. It’s actually both, I was overweight when this started but had quite a bit of muscle as well. I’m pretty malnourished at this point. I’ve been told to try and stick with plant based protein and I do daily, however I also like to eat a lot of salmon and lean chicken and pork to try and help there as well. I usually gain about 20 up to 30lbs of fluid before each drain. I also eat as much fruit as possible and cut out fat and sugar. Oh and no red meat anymore as I was told to avoid it. I miss the hell out of it. 


Here's a pretty good article to explain protein and sodium intake:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990138/

For fruits, you should watch out for potassium which can build up especially if you're also taking spironolactone.

Try getting an appointment with a top nutritionist, someone specialized in liver disease, as diet is of paramount importance (especially if you have already some muscle wasting). Guidelines rearding protein intake have changed quite a bit in the last few years. They may tell you to increase your intake of red meat (more bioavailable)

12 days ago
5/24/18
Posts: 1109

Good luck OP. I have no further advice that the good doctor hasn’t already mentioned. 

12 days ago
7/24/15
Posts: 5791
mataleo1 -
Fold me like one of your lawn chairs - 
mataleo1 -
Fold me like one of your lawn chairs - 

I really appreciate your reply Mataleo1. It really is helpful. I’m on diuretics currently and plan on asking to see why the haven’t been adjusted as of yet. I also limit sodium all together and usually am under 500mg daily. I have not considered drinking less fluid however I think it’s naturally very low now due to the buildup I deal with. I am interested in hearing more about the TIPS shunt you mentioned, as I have seen that as an option based on my own research. I am also planning on asking about a peritoneal cather for long term use to drain at home if you possibly have heard about that. Are there other things I should be looking at and evaluating to manage the ascites outside of this? Mainly being to expand on the protein type etc? 
 

Excersizing daily has probably been the area in which I have to most problems trying to stick with consistently. The pain and discomfort of the ascites is tough to be active with, but I’ll definitely work on doing better there as well. I have lost 90lbs over the last 8 months without actually putting much effort into trying to do so. I have also stopped all smoking and marijuana intake as well. You nailed it on the head with the transplant point, definitely doing everything I can regarding my MELD score to try to become the perfect candidate. 
 

Thanks again for your reply, I definitely plan on shooting you a PM. 


No problem dude. You already seem to have a good knowledge base. And a very good attitude. A few points:

-As you may know, it's not only the salt you add yourself. Commercial broths and soups for example have a tremendous amount of salt. Even V8 has a lot. So count everything you take in.

-I'm a little surprised they haven't mentioned the TIPS or other types of shunts, given you're followed by a hepatologist. Not everyone does it, and there are some risks (especially if you've had encephalopathy), but it's helpful for some. And yes, a peritoneal catheter for drainage may help but keep in mind you have to be extremely clean and dilligent with sanitary procedures. If you're not careful, the risks outweigh the benefits.

-Weight loss: was it fat or muscle? Make sure it's not muscle wasting.

I shot you a PM as well. It’s actually both, I was overweight when this started but had quite a bit of muscle as well. I’m pretty malnourished at this point. I’ve been told to try and stick with plant based protein and I do daily, however I also like to eat a lot of salmon and lean chicken and pork to try and help there as well. I usually gain about 20 up to 30lbs of fluid before each drain. I also eat as much fruit as possible and cut out fat and sugar. Oh and no red meat anymore as I was told to avoid it. I miss the hell out of it. 


Here's a pretty good article to explain protein and sodium intake:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990138/

For fruits, you should watch out for potassium which can build up especially if you're also taking spironolactone.

Try getting an appointment with a top nutritionist, someone specialized in liver disease, as diet is of paramount importance (especially if you have already some muscle wasting). Guidelines rearding protein intake have changed quite a bit in the last few years. They may tell you to increase your intake of red meat (more bioavailable)

Perfect, I am following up from here via PM. Thanks again Doc.