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Ascites, Meld and

Hello, first post here my name is taylor.  I was diagnosed with stage B cirrhosis CPS of 9 in June 2011. Meld is 13 not considering sodium which is low. The GI doctor said I had two years to live.  A month earlier I was told that I had an inflamed enlarged liver due to alcohol and went home after 7 days.  Then when I returned they told me my liver had shrunk and I had cirrhosis.  During this month period I felt very bad and was bed-ridden with what felt like a severe flu. Body aches, fatigue, slight fever, bloating, painful spleen and liver (under right rib cage) etc.  I do not know what it was due to.  I had not drank for over two months at that point.  Over the past two years I have felt these same flu-like symptoms several times but only for 2 or 3 days.  A couple of months ago I began taking Cipro to help with preventing bacteria formation in the ascetic fluid.  The past 10 days I have felt the same feelings that I felt the first time I experienced this (May-June 2011).  It seems from what I have read that this could be a virus.  But I have also read that cipro can cause these symptoms as well.  I am taking 550mg/day which seems high to me. I am wondering if it is a virus cant they determine the type of virus attacking my liver.  It seems that infections or virus can be narrowed down by doing certain tests and that would help prevent further damage to my liver. I am taking Cipro for bacteria.  I  also take lactulose, furosemide and amelioride and milk thistle.  I have been really sick and am just wondering if these flu-like situations (liver and spleen pain and joint pain and fever and fatigue) are symptoms of further damage to my liver or what is happening to cause these feelings every so often. I also have a navel hernia that is quite painful with the ascites at times. It became obstructed in march and I had emergency surgery and now it is coming back out.  Lastly, I am taking 80 mg of furmoside and 10 mg of ameloride.  My understanding is that 5 mg of amelioride is equiv to 25 mg of spirolactone. If this is the case then the proportion is wrong and it would seem with my refractive ascites (which has caused herniation and a collapsed lower left lung lobe) it would need to be increased.  I scheduled an apt with my GP to discuss since the gastroenterologists at an unnamed hospital in Oakland ca take for ever to schedule and then are not very knowledgeable of the liver in my opinion.  My next apt with liver specialist at UCSF is in Nov. He said to find a good gastro on last visit but I have been pretty ill over the last 3 months feeling better now.  He said at a meld of 13 too low to be on liver transplant list but I do have moderate ascites. So scheduled apt with GP to give me a referral, to discuss my medications for the ascites.  Liver specialist said I should get a bone density test and take the 550 mg of cipro per day. and to change the quantity of diruetics as needed while observing the creatine.  I thank you for the opportunity to post and would appreciate any advise anyone can give me. glad to be here thanks
2 Responses
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446474 tn?1446347682
COMMUNITY LEADER
Hi.
I have been going to UCSF for 6 years now due to cirrhosis. You must get in there. The care you are receiving is poor. I won't go into the details as playing doctor is a waste of time. You need to get the medical help you need before things get worse. Not because the doctors are "bad" but they are not knowledgeable and experienced in treating patients with cirrhosis. It is no their job to treat cirrhotics and they shouldn't be doing it unless there is no liver clinic or transplant center near by. Well the Bay Area has great care for patients with cirrhosis so you need to access it.

It is tough getting into UCSF because we have the largest liver transplant wait list in the country but well worth it. So just be patient. You will finally get the help you need.

I can assure you that all of the symptoms you are experiencing are "typical" for someone with full cirrhosis. (flu-like situations (liver and spleen pain and joint pain and fever and fatigue, hernia, etc. etc.) Most of us experience some or all the the things you mention and many of us other more dangerous complications. I have had the same symptoms for over 4 years now. Luckily UCSF has help me to get them all under control so I don't suffer like you are.

My best advice is to listen to the hepatologist at UCSF.
Who is it? I know them all.

The reason you need a good gastro is you don't want to have to go to UCSF for every little blood test you have. The gastro will do the routine stuff which is what they are qualified to do. UCSF will direct your treatment. So UCSF will tell your gastro what to do.

Yes you need a MELD score of 15 to get listed at UCSF. Remember MELD will change over time so in a few MELD it could be 15.

Get a bone density test and take the 550 mg of cipro per day as the hepatologist said.


The bottom line is you need to be seen at UCSF and have a full evaluation to determine the full extent of your cirrhosis and to get your symptoms and complications under control. Do everything the UCSF hepatologist told you so there are no delays in getting seen and taken care of.

By the way I live in San Francisco.

Hang in there.
Hector
Helpful - 0
Avatar universal
Hi Taylor,
I can't really give you any advice or suggestions because your case is fairly complex, but I think Randy or Hector will hopefully be along soon to respond to your post.  The fact that you have a hepatologist at UCSF is wonderful as you would be getting the best possible liver care there.
Keep us posted.
Advocate1955
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