Ascites

My boyfriend was doing well for a couple months on Baraclude and taking 2 kinds of water pills(low dose). Now he is blowing up with water and got 6 lieters drained 8 days ago-they doubled up on water pills-but he is blowing up again. Is this normal ? Any replies are welcomed and thanks for taking time out of your day : )

He has Hep B. Just found out in June this year and they said it was chronic.
I guess we need to be stricter on the salt content. Dr at I.U. Med said keep sodium under 2g's and he doe's that so I guess we should cut it out all together somehow. Thank you for your advice !

Thank you David ! I much appreciate your advice and will start counting the mg's and keep under 1000.
Another question.......why doe's the liver not like salt ? Do you know ? I am just curious and would like to understand in as many ways as I can. I would also like to completely comprehend what exactly takes place inside the liver from the Hep B. I am just one of those kinds of people that want to dig deeper. Again Thanks !

Thanks David. He hasn't touched alcohol since the viral news in June. And I haven't had a drink in over a year because of a d.u.i.
Your news of your Hep C being undetectable for 2 years is very encouraging ! Thanks for your helpful replies I appreciate every word : )

DV

I agree with Ziff...keep going on one or the other of the posts...let me know which one and I'll lock the other or move the comments over to keep them all current.

There is a great Resources post at the top of this forum...with definitions, what to expect, lab definitions, etc. I think it will really help you.

Are things a little better today?

Ziff brings up a good point...sometimes it isn't just ONE thing that does in a liver. I've told my partner's story so many times...but the bottom line:

Hep C, Alcholic Liver Disease, Liver Cancer, Eposides of Hemachromatosis, and exposure to a workplace chemical that damages the liver...he was doomed to disaster!

Which has worked out pretty well for now...he is sober and has a new liver. He still has the Hep C. So that is our next battle!

Hugs,

Mama Lama

Here are the other devastated posts. They will post on this thread now:



so sorry for your situation. your boyfriend should be seeing a hepatologist for evaluation. only a hep doc for your bf. the dr you are seeing will monitor your liver thru bloodwork for the time being. most patients clear the virus without treatment. at 6 months , if you havent developed anti bodies the dr will call it chronic. approximately 5% of infections go on to become chronic. and then not all chronic courses are serious. if you google labtests online, they have a great site learning and interpreting your labs. having changed your lifestyle is huge and gives your bf a much better chance. best to you two
barry

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MamaLama
Forum Moderator


Hi DV...That's my new nick name for you, as you mixed up your screen name.

Welcome to the forum. As you have discovered our members are both patients and loved ones of patients living with liver disease.

There are some good sites to review in the resources section at the top of this forum.

I think you have gotten good advice about fluid retention and diet...keeping the salt to a minimum. Advancing liver disease and abdominal or leg swelling is not unusual. Hopefully our member ZIFF will be on later and will share with you about his battle with belly fluid - ascites.

When they take a lot of fluid at once, most of our members also get albumin to replace that which is lost.

There are several l kinds of diuretics...one is potassium sparing and I hope they have you on that one with any others...so that your electrolytes don't get mixed up.

When are you meeting your doctor next? Is he/she a Hepatologist? That is the best for liver diseases. the regular primary doctors or general GI docs are not specialists generally.

Healthy diet, low sodium, get some exercise when you feel well enough, get lots of rest, and let us hear from you,

Best.
Mama Lama





A.Ziffle
Veteran Member

Hi DV, I had severe issues with fluid retention in my abdomen as Carol mentioned. If his doctors haven't performed a Paracentesis yet they may have to soon. Paracentesis involves you having to get the fluid drained manually by means of a suction device. A Radiologist does a sonagram to mark the spot where the largest pool of fluid is located. The surgeon on call at the time typically is called in to insert a needle into the abdomen at the point the radiologist marked. A tube is then attached (similar to a I.V) that goes to a pump with containers on it. It removes the fluid much like a vacuum. When a container gets full (liter) the other container begins to fill while they dispose of the fluid from the first or take small samples for lab testing.

I've had over 8 liters removed in one sitting on many occasions. Of course it hurts to have the needle inserted initially but the procedure is pretty painless otherwise. That initial pain pails in comparison to the pain of having 12 or more liters of fluid trapped in your stomach. I was seeing a G.I at the time and he tried desperately to control the fluid with medications for almost a 6 months. Not a bad idea if it works or is showing signs of working. It's a really bad idea if it's chronic like in my case. I eventually got a appointment with a Hepatologist before this guy (GI) killed me. The Hepatology and transplant center at UNC Chapel Hill, NC. saved my life when they got involved.

Seeing a Hepatologist should be his min goal aside from treating the fluid issue. The low sodium diet works for most people just like the diuretic pills. Done in combination people have seen great results without the use of drastic procedures. Breaking a salt habit is tough or it was for me. Eventually once he gets used to it salty foods will taste horrible, It's just getting there that's difficult. If he has edema ( fluid in his calves, ankles and feet have him keep his feet elevated above his head for awhile. TEDS medical stockings work well for decreasing the pressure in his lower legs.

Possible problems to look for are umbilical hernia and internal bleeding. Blood in his stool is bad news. Umbilical hernias are somewhat common with large volumes of fluid in the abdomen. It makes a inny belly button into a outty. The fluid pushes it's way through the stomach and gets into the soft belly button cavity and pushes it outward. Mine grew to the size of a golf ball. If this happens as long as it stays cool to the touch, Flesh colored not red, and when lightly poked is soft to the touch it a good indicator it's normal for the situation. If it gets red, hot and hard go to the emergency room immediately. Could be intestine is pushing through the opening and about to rupture. This is instant death if the intestine ruptures and surgery will likely have to be performed to replace the intestine into it's proper spot again. This is what happened to me.

There is more for you to learn but this should give you something to chew on for awhile. Think about some questions you want to ask and we'll do our best to answer them. We aren't doctors but most of us have been down every route where liver disease is concerned from a patient or caregiver perspective.


Ziff

Ziff
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" Never try to teach a pig to sing , It wastes your time and annoys the pig . "

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devasted

Thanks for the replies-David, ppmguy, mama lama, A ziffle. Im not from the U.K...... I am from the U.S.A. a total country girl. If my English stinks it would be cause this is how I speak and write so bear with me please : )
David, He is being treated at I.U. by a Hep Dr. I am not being treated. Hep Dr. said he wouldn't look at me again until he knew I have had it over six months. His thinking was that I could somehow get rid of it possibly on my own. I don't know and I am nervous about it. I have worked in healthcare for 23 years as a c.n.a. and simply do not trust most Doctors. And I was vaccinated.. yes.....epic fail !
He has had esophageal banding done five times and things got to be looking better so far after 8 weeks. He had a paracentesis a little over a week ago and they drained 6 l's of fluid from abdomen. He has an umbilical hernia that looks like half of a gumball shape. He takes Baraclude 1mg, spironolact 200mg, and furosemide 80mg.
I appreciate all advice on here. I hate that any human being has to go through this and suffer !

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Worried daughter2
Regular Member

Hi Devastated.

My advice is to make sure that both you and your hubby are followed closely by a GI doctor that specializes in liver disease or a hepatologist. Frequent blood tests and scans (Mri, CT and ultrasound) are very important.
My mom has hepatitis B...she has been followed very closely by her local GI doctor who specializes in liver disease. She was also seen a few times a year by a transplant center who coordinated with her local doctor. Last year, we found out that my mom had Hepatocellular carcinoma (HCC)...since she had scans frequently, it was discovered when it was 9mm. Eventually, the tumor grew and my mom got exception points and moved up the transplant list.Thankfully, my mom was blessed with a donor liver 7months ago. I feel its extremely important to have close followup care no matter what stage of the disease a person is in.

You have joined a fantastic forum. There are so many knowledgeable people here...both patients and caregivers. Welcome and make sure to ask lots of questions...its the only way to learn.

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devasted
New Member


Thanks worried daughter2. I get another blood test in January to see if I still have it or what not. His hepatologist wasn't concerned with me and will not treat me until I have it past six months. He goe's to Indiana University to hep Dr again in 2 weeks. I don't think this Dr. doe's enough bloodwork. I think he has too large of patient load. He is very nice but has too much going on.
I am happy for your Momma ! That is awesome ! Thanks for the reply and encouragement as I am really scared. Thanks : )

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**David**
Veteran Member


DV,
Something in your initial post made me think you might be a Brit, but it wasn't because your writing was bad. It was just a feeling when I first read it. What is IU, or should I say where is it?
--------------------------------------------------------------------------------
nullum beneficium impunitum...

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Kierstin
Regular Member


To combat the fear, educate yourself. Its the best cure for it. Once you research and understand the body/liver and how Hep B effects your various systems and the treatments, and of course the outcomes, trust me, you will suddenly find the fear is replaced by fight. Equiped with knowledge, you will want to come out with both fists up fighting.

Good luck,

-K

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devasted
New Member


Thanks Mama, David, K. and Ziff : ) You are Angels !

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arneeb
Veteran Member


OMG.. Devastated... now you went and done it.. put wings on the boys... Mama earned hers.. Oh well guess the guys did too...

Glad you're getting help here D.

Sandia
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There is no pit so deep that He is not deeper still... Corrie Ten Boom

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A.Ziffle
Veteran Member


Its o.k. to combine the two posts I have into one. They (Doctors) told him it was Hep B. He did drink hard liquor before. How doe's that have a bearing on his survival or not with Hep B ?
He is sleeping a lot it seems like. He wakes up a lot but back down. The fatigue is awful and I have that too.
And it is salt that is making him fill up with water. We thought we had it under control and really wasn't keeping it to under one gram a day. The specialist said keep under two grams and that wasn't enough.
We were evidently salt junkies before lol ! It is not easy to totally drop all salt. It is in everything practically. How do you eat good on a poor mans budget ? That is the new thing to deal with is how ? I sure hope the factory call's me to work soon, and somehow with this fatigue I will work hard if it kill's me. This is more stress right now than all my life up to this point combined !
Thanks to all of you responding to my posts ! You are my angels and I thank you for your time and knowledge : )


Devasted

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A.Ziffle
Veteran Member


Until the Molly Lama ( Mamalama) comes on I placed your last post here. Just like salt a variety of things aggravate livers that have already been compromised. Alcohol being the worst violator. Start treating the liver as a separate entity. The liver is a filter for contaminants that otherwise would get into your blood stream. Sick livers can't filter properly, exposing you to any and everything you ingest or that might work it's way into the body. No or low immunity even to simple things. While salt is a needed to maintain proper balance in the body, it's certainly not good to be gobbled up in the volumes we as modern consumers do.

Start looking for low sodium recipes on the good ole interweb. It's a nuisance at first to get adjusted to but if you plan ahead, Like cooking simple meals the night before it wont put you out to badly. Left overs that are home cooked are the best way to keep the salt down for me. Fruits and veggies or salads with chicken. Fish is liver friendly and so is (cringe) pork if cooked properly. Stay away from red meats, Hard on the digestive system. Find a salt alternative, I use a substitute made by Cavenders, It is made up of several spices and is salt free. Careful which one you choose if you go that route as they make a few types (blue label is no salt). In a perfect world we wouldn't have to fear going to the grocery store and spending tons of money to eat properly without thinking. Once you establish what is acceptable to your wallet and your health you'll see it's not that bad.


Ziff
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" Never try to teach a pig to sing , It wastes your time and annoys the pig . "

That's great news. You must be doing a good job of medicine cop. If your not getting on his nerves your probably not giving him enough Lactulose. That stuff makes me ill to this day just thinking about it. I was taking so much of the stuff I stayed in the bathroom. Sore rump and a bad aptitude. Miserable doesn't even scratch the surface of how I felt.


Ziff

I use spices and citrus fruits for flavor, instead of salt. Lemon, lime or different kinds of vinegar add more taste than salt. I eat more chiles in my food. They vary in how hot they are, depending on what suits your taste. Hot sauces often contain salt, so fresh is better.

p.s. Dining out can be VERY bad for the liver, even when something is called "heart healthy" you just can't trust the restaurants. They can only survive if they have lots of preservatives (which often translate to sodium) in their foodstuffs. Even salads can be loaded.

I can tell you this from my experiences at owning a restaurant.

Best of luck,

Ideally, let the doctor discuss the results with you, you should call him today and ask those questions.

I don't like the elevated ALT and AST though. He IS seeing a hepatologist, right?

Mae

Hello again to my Angels who all gather here and lift each other up
I found out he is decompensated. A Child's class B and concomitant with hep b and alcoholic cirrhosis. And I found that out by picking up his chart and reading it while his dentist was out.
His hep Dr. Had sent the dentist this info and we had not learned this until now.
The University hospital that my bf is seen at has a huge lack of communication going on. I don't expect perfection, but this is a scarey path to walk and not know what to ask or expect now. Next appt with hep Dr. I will have to tell him to not be scared and just communicate info any and all we would like to know. I just am kinda shocked that the Dr. Isn't more concerned.
Also I still have to be the med cop. Right now he gets upset if I even slightly have emotions. I'm not allowed to talk very much or lol if I don't talk that is being mean. I had spent considerable amount of money on dental work and wasn't satisfied with the work so I was less talkative and that means I was having emotion that I shouldn't have brought home-seriously lol. I didn't cuss or raise my voice or rant, rave or complain. I was upset and just was at a loss of words. I feel like I'm being punished for existing. Mentally I'm fighting his cold heart.

Arneeb thanks for the reply ! It did feel good to rant. I have nobody to talk about this with except this forum. He chooses to not let his family know what is really going on. He is embarrassed by having hep
. I'm angry about having it to the point I would wear a T-shirt declaring it lol. I went to a dentist and they treated me like I was dirty.
So why is there so much aids awareness but not Hep ? It is 100 times easier to catch they say. They have made aids more acceptable by speaking out about it and so now without representation society shuns hep and makes it the silent personal hell I must suffer alone because I must have been a badd girl to get it.
Sorry for the gripe. I feel like I can only silently scream and I am frustrated......very frustrated

Dear Maebehere, we both have it. I got tested after we found out about him. My viral load isn't real high,I haven't had this a whole year yet.
While he must have had it for years or so the Dr says. I don't focus on me much. I just feel extreme fatigue and have nite sweats. He has a lot of things going on that worry me but we hate being treated like we are dirty. People can be so cruel it breaks my heart and makes me really angry too. Am I losing it feeling like this ?