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Posted 12/7/2013 9:11 PM (GMT 0)
Hello all members : ) I am new to this forum and was diagnosed with acute hep B in july this year after I found out my boyfriend has chronic hep B. We are blown away and in shock of course like everybody else.
We think he got it by saving a guys life who had a wreck and bled all over the place-that's the only way we can think of......but doe's it really matter now really......
We have changed our lifestyle totally and he is having trouble with water in abdomen now after things were looking good. He had varices banded about five times and now water issues. They increased his water pills to no avail yet. He is scared and so am I. How do we not live in constant fear ? I try to stay positive and have a prayer life. But still battle the fear daily.
I am thankful for this forum-thanks to everyone who posts on here : )
Posted 12/7/2013 9:14 PM (GMT 0)
I mean't for my member name to be devastated not devasted lol !
Posted 12/7/2013 10:04 PM (GMT 0)
I posted on your other post about water build up, and you answered my question concerning what type of hepatitis you and your boyfriend have. I'm guessing you live in the U.K. or another Commonwealth country from your language. Hep B is treatable, though the chronic type can be difficult to eradicate. Are you both being treated for it?
Posted 12/7/2013 11:58 PM (GMT 0)
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
Posted 12/8/2013 12:53 AM (GMT 0)
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
Posted 12/8/2013 2:22 AM (GMT 0)
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
Posted 12/8/2013 3:48 AM (GMT 0)
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 !
Posted 12/8/2013 4:17 AM (GMT 0)
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.
Posted 12/8/2013 4:31 AM (GMT 0)
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 : )
Posted 12/8/2013 4:35 AM (GMT 0)
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?
Posted 12/8/2013 4:59 AM (GMT 0)
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
Posted 12/12/2013 4:59 AM (GMT 0)
Thanks Mama, David, K. and Ziff : ) You are Angels !
Posted 12/12/2013 6:19 AM (GMT 0)
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
Posted 12/12/2013 1:38 PM (GMT 0)
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
Posted 12/12/2013 2:08 PM (GMT 0)
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
Posted 12/12/2013 6:35 PM (GMT 0)
I'm going to lock this thread, all posts have been combined with duplicate thread "Ascites"
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