38 and Diagnosed with Nonalcoholic Steatohepatitis

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tammib
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/14/2007 8:27 AM (GMT -7)   
I'm a 38 year old overweight female diagnosed with nonalcoholic steatohepatitis two weeks ago. I went into the hospital in May to have my gallbladder removed. They found a mass on my liver and did a biopsy. The GI doctor said I have this and need to lose a lot of weight in a year's time. He gave me a prescription for Ursodiol and that made me nauseous. The doctor was completely rude and abrupt. I'm seeing a new GI dr. on Monday. So far my GP has seen the biopsy report and said I'm going to live...just lose the weight. The cardiologist also said I'm not going to die...lose the weight. He did not see the report though. My psychiatrist said I'm not dying, lose the weight. He did not see the report either. I've read the report and it looks awful. My husband has an old friend that he's not particularly close with now that he spoke to this morning. He's a cardiologist but he's very knowledgeable about all that is medical. We faxed him a copy of the biopsy report this morning and I know when he explains it to me, he'll be honest. I'm very scared and am having a lot of anxiety over this. Unfortunately I've read too many horror stories on the internet and now I feel like I have every symptom of end stage liver disease. Anyone out there who can tell me a happy ending story or at least something to ease my mind?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/14/2007 1:42 PM (GMT -7)   
Tammib, welcome to the forum! I've just read a little about your diagnosis, and it does seem that weight loss is the #1 recommendation. Also, avoid alcohol and do get some exercise. Eat a healthful diet. Research is now being done to determine whether these measures will reverse NASH. However, it's certain that they will help and can possibly prevent progression to cirrhosis. Was there any mention of cirrhosis in the report?

Connie

tammib
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/14/2007 5:18 PM (GMT -7)   

Thanks Connie, thanks for your reply. No mention of cirrhosis here thank God. I just heard back from my husband's friend the cardio guy. He looked the biopsy report over and he doesn't feel that there's anything to be panicking about and to see what the new GI giuy say on Monday. I feel better but will feel evan better still when I hear it on Monday!!!!

Tammi


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/15/2007 12:48 PM (GMT -7)   
Tammi, come back and let us know the outcome of Monday's visit with the new GI doc.

Connie

tammib
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/24/2007 7:42 AM (GMT -7)   
Hi Connie. Here's a bit of an update. I had my visit with the new gastro doc. He seemed ok and was pretty knowledgeable. I have on my side the University of Miami's input. They moved my appointment with the head of Hepatology Department to August 21st since I'm so anxious and my reports were so conflicting...multiple lesions on 5/10/07 CAT scan...no mention of any lesions on 6/17/07 CAT scan. Elevated enzymes on 5/10 also. Enzymes normal on 6/17. The biopsy did confirm NASH though (although the report said "suggests steatohepatitis" - does that mean that IS what I have for sure?) So, I had a blood work-up last Tuesday and an MRI on Thursday (don't ask - I'm very claustrophobic!) and I see the gastro doc tomorrow afternoon for the results. I've been taking a liver-safe tranquilizer since last week (it's processed through the kidneys) and that helps the anxiety. I'm terrified. I already know I have NASH, but what I don't know is the extent of the damage and what the prognosis is. Better to know?...or not to know?.....hmmmm. Thanks for listening and caring!
By the way, do you also have NASH?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/24/2007 1:44 PM (GMT -7)   
"suggests steatohepatitis"
I would interpret that as meaning "most likely."
 
It's always better to know what you are faced with, in my opinion, in order to treat it.
 
No, I don't have NASH--I have chronic active hepatitis C, which led to liver cancer.  I had the entire right lobe of my liver removed in May, and am now cancer free.  I still have hep C, but if I'm eligible for treatment, it would not be for 6 mos., when I've healed from the surgery.  I do have mild cirrhosis in what is left of my liver.  However, there are some posters here with NASH.
 
Best of luck!
Connie

Post Edited (hep93) : 7/24/2007 10:34:56 PM (GMT-6)


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 7/24/2007 3:46 PM (GMT -7)   
 
 
Tammib,
 
I read your post and can relate it took quite a while for the doctors here in Fl to decide what exactly was the cause of my liver hepatitis.  I also went to the university of Miami Center for Liver Diease and it was a very comforting experience the doctor was very knowledgable and very helpful she put me on a medication recommendation that my GI doctor here is following and for the last 8 weeks my liver levels have been normal that is the first time in a year.  I am only on predsione because I could not tolerate imuran.  We are very lucky that we have access to one of the best liver hospitials in the world here in Miami.  They are so knowledgeable because all they deal with is liver diease unlike our GI doctors who deal with everything.  The doctor is Miami has had many phone conversations with my Gi doctor and also monitors all my blood work I feel that I am doing all I can to be sure I am getting the right information.  Good Luck and try to stay calm and be sure to bring all your copies of tests and blood work with you to Miami and a list of all your questions.  I also have a follow up visit in Miami on aug 28th. 
 
PS I have autoimmune hepatitis brought on by Liptor and blood presure medicine.
 
Jerry1   

prayingformom
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/29/2007 3:56 PM (GMT -7)   
Tammib,
 
My mom was diagnosed with the disease 8 years ago, but it had already progressed to cirrhosis.  If your report doesn't mention cirrhosis that is a very good thing.  NASH thank god is not a death sentance or even mean you'll ever need a liver transplant, it just means you need to change your lifestyle.  Luckily you were diagnosed early and will have time to stop the progression. The key is to keep in constant communication with your doctors, go through all the testing they request, and follow their advice TO THE LETTER! Believe me you don't want it to progress to cirrhosis, it's an ugly thing, and I spend my days sitting on the edge of my seat praying for the phone to ring with the announcement that the hospital has a new liver for my mom.
 
The doctors here in Michigan think it may be a hereditary thing, and as soon as I have insurance again I plan on undergoing the tests. Until then I decided to live as if I have it, and watch my diet, exercise regularly, and avoid alcohol at all costs.
 
Good luck, I will be praying for you.
 

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/15/2007 7:37 PM (GMT -7)   
Hi tammib,
Sorry to hear you have this. I was diagnosed at 28 and have been living with it for 15 years now and every cell of my liver is completely full of fat. I had fibrosis previously but it healed supposedly and then the fat took over all through my liver. I have some other autoimmune problems and diabetes and everyone on my dad's side of the family has this or had it while alive and I'm the first to be effected so young. I hate being yelled at to lose weight because a fatty liver makes it awful to try to lose any weight. I lost 60 lbs. which took me off the really bad cycle I was on, I was heading toward dying from my wieght, but I was 103 lbs when I got it, so it caused my obesity, not the other way around. My dad has it and is 70 and is still doing fine, men seem to have it easier. He watches his diet due to diabetes and was on metformin for like ten years, and that helped a lot, it hasn't reversed but it hasn't progressed. My levels are no longer high, but I'm on a ton of medicine, including immunosuppressants and metformin. I'm glad they are taking this seriously finally. My family could have told them thirty years ago that this disease is a big deal, weve been coping for three generations. I hope you can get your diet down and lose some weight and regress it and be well again. And I'm sorry you have this.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/8/2009 9:06 AM (GMT -7)   
confused  My mother who is 64 and had an intracerebral hematoma (stroke) 20 years ago. 4 weeks ago, she was diagnosed with NASH. She has end stage liver disease. She has cirrhosis and liver failure. She has the portal vein thrombosis, a blood clot from liver to the spleen, bleeding esophageal varices (doctor said they are small), diabetes for years, has been hositalized twice in the last month for encepahalopathy, once level was 142, the next time it was 60. They got it down to 30. She had a bout with small volume ascites, no fluid was withdrawn. She has been anemic, has low platelet count, for at least 2 years. Last week she fell and had another stroke which landed her in a helicopter to a major hospital. The bleed stopped, they didn't do surgery this time. She is home and with my sister who has taken a 5 week leave of absence. We thought she was on her way out. She is on 30ml of Lactulose 3 times a day. The doctors say she could live many years with this. My sister and I are so confused as to how they can say this. Does it get much worse than this? We are confused as to how to proceed with her care. She has suffered so long with the stroke and diabetes. We don't want her to suffer any longer. She is right with God but not ready to leave this world. She thinks she has 5 years to live. My sister and I think it is less than a year maybe months. Are we wrong? I know God is the only one who knows when she'll go but please help us to understand what we should do.
Thanks, 
BEACHYGIRL

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/8/2009 1:54 PM (GMT -7)   
Beachygirl, I'm glad you started a new thread, as you picked up on a very old one.  I have answered your new post.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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