ascitis ?

[grizwald]

I went to the hepa 6 mon. ago for an abdominal tap. I was told it was all removed (1.5 L) . 3 wks ago I had another, this time the dr. was out of town so the hospital's dr. and technician did it. they removed 7 L  first time I weighed 193 lb and dropped apr 2.5 lb to 190.5 lbs.  the second time I still weighed 193, lost apr 17.5 lb. to 175.5 lbs.  In 2 wks.  I regained all 17.5 lb. right back to 193. Ques.1. why did my weight go back to the exact same place then stop ? 2. why not keep going? maybe over 200? after the first tap hepa said he was going to put bands on some of my veins, when I asked why he said "I'm going to find out where all that fluid is coming from". I didn't know you could find out that way. I asked for a follow up to these procedures plus colonoscopy and upper endoscopy and was told I would have to have the follow-up with my GP, I said I would rather talk with him, because he did it. then he said no I have to go to my GP because he had faxed him all his notes. whats that got to do with it? I called and met with the GP and it was a total waste of time he said he would call the hepa back and talk to him.  I waited 4 days to give him time, like he asked, then called hepa and was told I couldn't have an appointment till feb. I noticed on the statements he has charged for 3 follow-up appt. I have not been told of any or been to one yet. None of this seems good to me. What do you think?

[grizwald]

Thank you  Hector, I have thought about that too and contacted my brothers in a city with a great transplant center.  I will have a good support team of friends and relatives but I don't know how to do it yet.  Could I go there and ask them to consider me for treatment? or does everyone have to bring a referall. Also, do they treat the hepatitis and perform transplants? They are in a diff time zone but I had planed to call later. I have taken diuretics for 7 yrs. but I look like I have a beechball under my shirt. Do you get to choose the treatment you want. i.e. Abbott or Giliad.
Thanks again, griz

[HectorSF]

The first and most important thing you need to do it get a proper doctor. A GP and GI and not qualified to treat you. You have ascities which typically is the first complication of decompensated cirrhosis. All patients who develop ascites need to be referred to a liver transplant center for proper care. Your cirrhosis is very advanced and irreversible. You will need a liver transplant in the not too distant future and be under the care of a hepatologist who manages patients with decompensated cirrhosis on a daily basis. Only a liver transplant center can help someone with such advanced liver disease. There are the only ones that can put you on their waiting list for a liver transplant.

You are focused on the wrong things. Weight is irrelevant. Until you get proper treatment for your advanced liver disease you will continue to accumulate fluid. That you doctors don't know why you continue to accumulate fluid is an indication they don't even understand the basics of liver disease and is dangerous for you to not have proper care when you have a potentially fatal condition. You should be on a low sodium diet and taking diuretics to manage your fluid accumulation. This is standard treatment for ascites and fluid accumulation.

I am sorry if your doctors have not told you how serious ill you are but you need to be aware of your situation because improperly treated or untreated decompensated cirrhosis can be fatal. Patients with ascities can develop infections in the fluid and need to be hospitalized and treated with IV antibiotics to prevent death. Decompensated cirrhosis means you have many more issues that you need to be aware of then your ascites and you need to be monitored by a hepatologist at a transplant center in order to stay as healthy as possible for as long as possible before your liver fails and you will need a liver transplant to continue living. While this is frightening at first there are many of us who are also waiting for a life saving transplant and the transplant center will have a support group where you can meet others in the same situation as yourself. Liver transplant is a life saving surgery and there are many people who are now living full lives again after their treatment. We are lucky to have the option to continue living despite the failure of our largest internal organ.

Please get a referral from one of your doctors to the nearest liver transplant center ASAP. You will then get the health care you need and minimize the suffering that is all patients with decompensated liver disease unfortunately most go through. There is no reason to continue to not receive proper treatment for your advanced cirrhosis. There is life beyond liver failure.

Why do patients with liver disease develop ascites and edema?

"In patients with chronic diseases of the liver, fibrosis (scarring) of the liver often occurs. When the scarring becomes advanced, the condition is called cirrhosis of the liver. "Ascites" is fluid that accumulates in the abdominal (peritoneal) cavity. It is a complication of cirrhosis and appears as an abdominal bulge. The peritoneum is the inner lining of the abdominal cavity, which also folds over to cover the organs inside the abdomen such as the liver, gallbladder, spleen, pancreas, and intestines.

Ascites develops because of a combination of two factors: (1) increased pressure in the vein system that carries blood from the stomach, intestines, and spleen to the liver (portal hypertension); and (2) a low level of albumin in the blood (hypoalbuminemia). Albumin, which is the predominant protein in the blood and which helps maintain blood volume, is reduced in cirrhosis primarily because the damaged liver is not able to produce enough albumin.

Other consequences of portal hypertension include dilated veins in the esophagus (varices), prominent veins on the abdomen, and an enlarged spleen. Each of these conditions is due primarily to the increased pressure and accumulation of blood in the abdominal blood vessels. Other signs of chronic liver disease are spider nevi (distinctive vascular malformations) on the skin, certain characteristic changes in the nails, gynecomastia (enlarged breasts), and shrinkage of the testicles (testicular atrophy).

The fluid of ascites can be removed from the abdominal cavity by using a syringe and a long needle. This procedure is called paracentesis. Analysis of the fluid can help differentiate ascites that is caused by cirrhosis from other causes of ascites, such as cancer, tuberculosis, congestive heart failure, and nephrosis. Sometimes, when ascites does not respond to treatment with diuretics, paracentesis can be used to remove large amounts of the ascitic fluid. "


Best of luck to you!
Hector

[grizwald]

there is one other thing I didn't mention,  hepa told me from the colonoscopy their were two poloups, 1 plain one which he removed, the other a pre-malignant type which he left in my colon to observe. I asked why? Ive never heard of that. He said oh yes we do that all the time. I asked the gp when I talked to him, he said oh yes they do that all the time to observe them if their hard to get to and would be dangerous to remove.I told I didn't want any pre- malignant poloups in my colon for observation, he left the office and returned and said no he put in his notes that he found two, nether were pre malignant and he removed both. now I don't know which story to believe, and is there a pre-malignant poloup  in my colon or not. and if he says no, why did he tell me yes when I asked, and what should I do about it because if someone has to look to see, I don't want it to be him, and I really don't want to go through that again.  I don't know who to talk too at the hospital or the group he works through or if either would help.or at what point do I seek legal assistance. what to do?

[grizwald]

not mean at all. thats the way I feel too.gp was trying to cover for hepa and wasn't sure how, started getting mad then tried to blame it all on me, I wasn't able to understand and I couldn't communicate. this is when I took a firmer stand and he said these were good questions and I should have answers for them, then told me to go back to the hepa.
thank you for your comments
Griz

[Dee1956]

I hope I did not come across as being mean. I am angry that you are being treated this way by two doctors who are supposed to be taking care of you.
So, sorry, Take Care

[Dee1956]

Hi, it seems you have a couple of problems besides the fluid build up.

I would think they are your hepa and  your GP. It sounds as if they are passing the ball back and forth.
Of course the Hepa should have done the follow up on you.  It doesn't make sense for him to tell you to go to the GP because he has the notes.

Something does not sound right.  If you can't get in til Feb I would go to the GP and tell them you want the "note" from the Hepa.  They would be typed out so that you could read them.  You might even be able to call the receptionist and ask for the a copy of the results just like you could if you had a sonogram or ct scan, blood work, etc.

I am sorry you have the problem of the fluid build up, it is odd it stops at 193, then having it removed and then these two guys who don't want to share your health information with you.

I would call and request the paperwork

Good luck
Dee

[grizwald]

I might also ask, if dr.s could stop this fluid from forming, would I weigh 175.5?