what should i expect?

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jwdolle
New Member


Date Joined Jun 2005
Total Posts : 2
   Posted 6/22/2005 11:09 AM (GMT -7)   
I was diagnosed with Hep "non a and non b" back in the 80's.
Recently (aprox 2 yrs ago) My spleen was ruptured due to hypersplenism, at which time I was told that I have portal hypertension and cirrhosis of the liver, complciations from the Hep which is now called Hep C.
 
I went to a transplant clinic and they had started the Interferon treatments to stop the Hep.
 
The doctor seems to act like everything is very minor and that I should not need a transplant for 15 or so years. The interferon treatments produced no results and made me very ill.
I have started over again and will be on it at least another year.
 
 I have Hypersplenism (destruction of platelettes) due to the portal hypertension and also it seems my stomach and sides are filling with fluid. (the doctor said it was just fat)
 
I am feeling I may be worst off then the doctor leads me to think I am ...I want to know what to expect with this disease as in the progression and rate at which I will deteriorate.
 
Also is there any one that has survived this stuff and what are the best treatments, I read something about these herbal rememdies (are they valid).
 
 

Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 6/25/2005 5:25 PM (GMT -7)   
Hi and Welcome to HealingWell, jwdolle!!

Some of the other members with be along and can answer most of your questions a lot better than I! :)

Just wanted to let you know, that we're glad you are here!

Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/20/2005 5:07 PM (GMT -7)   

Welcome, jwdolle!

I had a great reply all typed up and 'my computer ate it.'

My fiance was diagnosed with non-A/non-B years ago, also. We've been through end-stage liver disease, transplant, and now HepC treatment.

I'll try to answer some of your concerns / questions, based what we've learned in 2 years.

Portal hypertension, cirrhosis, and fluid in the belly (ascites) are, generally, more advanced complications of liver disease from HCV.  All that means is someone who contracted HepC in the last couple of years, wouldn't usually have these problems, yet.

There are treatments available to manage symptoms. A low-protein diet can help with 'brain fog' or confusion, and a low-sodium diet is recommended for fluid retention. Diuretics are also prescribed; two of the most common are Lasix and Spironolactone, which are taken together.  Lactulose is a medication that helps with problems related to protein digestion.
 
As far as herbal treatments, one of our friends used herbs for years to keep her liver disease at bay. Recently, she began seeing the liver doctors who treat my fiance. In a very short time, her quality of life improved dramatically.  While the herbs seemed to help the liver (her MELD score is very low), many of the symptoms from the complications became worse.
 
We were told by doctors, and you'll find this advice in many medical publications, Do Not Take Herbs.  Doctors do, what seems like, millions of tests to determine liver health, treatment options, and qualification for transplant.  The herbs alter the liver and can mask the true condition.  This can lead to misdiagnoses and incorrect, inadequate, or delayed treatment.
 
The best advice I can offer is, as they say, "Consult your physician before making any major changes to your diet or lifestyle."
 
No one can tell you with absolute certainty how your disease will progress. I can say, with some confidence, that it will get worse without treatment.  There is a risk of infection in the fluid in the belly, altered mental state from problems with digestion, nerve damage in the legs from swelling, coma, and even death.  Everything small thing you do can help - diet, exercise, medication - or hurt.
 
You know your body better than anyone else.  If you feel that things are worse than the doctor is telling you, by all means, get a second opinion.  Find a physician or clinic where you are comfortable and can talk to the medical staff about your concerns.  Read everything you can about portal hypertension, ascites, cirrhosis, and liver disease - symptoms, treatments, etc.
 
Becoming an informed patient is the best thing you can do for yourself.
 
I wish you all the best.  Let me know if there's anything else I can do.

DJ


jwdolle
New Member


Date Joined Jun 2005
Total Posts : 2
   Posted 7/22/2005 9:18 AM (GMT -7)   
Hi Jules thanks for your response, I am glad to hear that your fiance seems to be a success with this illness.
 
I am not sure where I really stand health wise, other than I am physically fit and am not experiencing any symptoms other than side effects from the interferon. I imagine the state of mind a person is in can influence his/her symptoms. I do read alot of information on this stuff and my doctor told me to stop. Maybe in a sense the symptoms seem to arise the more i become educated, not that symptoms arent present but I have learned to cope with most of them when i didnt know what they were.
 
The doctor says I am very early stage of liver disease and that I have a possible 15 years before I need a transplant and that with a transplant I could have another 15 years. I should count my blessings for this It seems I have had hep c for 25 years.
 
 
Thanks
John

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/22/2005 4:51 PM (GMT -7)   

Glad to hear that you're doing pretty well. The effects from the interferon/ribavirin aren't a whole lot of fun, are they?

In a sense, you're very lucky. You know what's going on and it's early.

Keep your spirits up - that's half the battle, it seems.

I wish you nothing but good news.


DJ

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