hep C

[lilsis424]

Can anyone tell me what you can do if interferon treatment is rejected by your body.  My sister has tried twice and her body rejects it within the second shot of interferon.  She is Stage 3 level 4. ALT/AST are very high.

[HectorSF]

"She has been told that she has the beginning (very early stages) of cirrhosis." "She is Stage 3 level 4."

Are sure? What does her last biopsy say?
How recent is it?
From the info you provided your sister appears to have LATE stage cirrhosis. Patients with stage 3 or even early stage cirrhosis (stage 4) do NOT have these complications. Maybe the treatment cause her cirrhosis to decompensate? It is very possible and can happen. ("Her platelets plummet to about 4, WBC non existent.  needed blood and platelet transfusions. ended up with hepatic encephalopathy.  Ammonia levels very high.)"  
What is her MELD score?
Is she listed for transplant?
Hepatic encephalopathy for which lactulose is used, is for patients with advanced cirrhosis not stage 3 or beginning cirrhosis.

I agree the doctor may be great as far a credentials but when it comes to having a life-threatening illness she needs more. She needs someone who truly cares and is on top of her case. There are other hepatologists at the transplant center, call the transplant center and see if you can change doctor now, before thing get more critical and you are really in the dark about what is going on. They should help you out. This happens all the time and people are professional enough to realize not every doctor and patient bond. Remember Cirrhosis is a life-threatening illness. She needs to have a doctor she fully trusts with her life as the is the reality of the situation.

As far as treatment for hepatitis C. I think it is clear that it is too late for that. The only option left is to get a liver transplant to save her life. I am in the same situation so it is not "the end of the world" as long as she has good care as she waits for a transplant. That is what should be focused on now. Getting to transplant while staying as healthy as possible. That is what she needs her doctor for.

Perhaps you can provide the information I asked about and we can help you further.

Good luck to you both!
Hector

[lilsis424]

Thank you for your response.  Her doctor is at Henry Ford Hospital downtown at the liver center.  Her recent test results for the neurologist, & internist are being sent to her hepatologist.  Will see if we get a response.  Thanks again!

[lilsis424]

Yes her body responds to the lactalose.  She is having difficulties with memory (short term) and speech.  She know what to say but the words come out differently.  She went to a neurologist this week and he thinks it may be one of the medications she's on.  Just want to give her some sort of positive in all this.  She's so depressed and her fatigue is high.  She had another MRI and 2hrs of testing when she was at the neurologists.  Waiting on blood work.  She has been told that she has the beginning (very early stages) of cirrhosis.  Can't seem to get an answer from any of the docs as to how long we have.  The hepatologist she has been going to is the one down at Henry Ford Hospital.  We were told she is the best in the area.  She may be good but her care has been awful.  Even when she was in the hopsital after her 2nd dose of interferon (near her house, but affiliate of Henry Ford) the doctor didn't even call us back then after several phone calls.  Any suggestions on making her more comfortable or possible trtmnt is appreciated.  

Glad to hear that you are doing well.  Keep up the fight!

[willbb]

Sorry to hear of your sisters on-going problems. You say the liver doctor has written her off. It is time for her to get a new doctor immediately to evaluate her. It sounds like your sister may have cirrhosis and she would need to be seen by  an experienced Hepatologist preferably at a large liver centre or  possibly a transplant centre ,,given she is having such problems.

I am not personally very familiar with centres in Det. ,however I do know of this one and possibly you or someone should contact them right away to  get her on the right path. Good luck to you and your sister..
Will.

Henry Ford  Hospital  (Liver Diseases and Transplant Center)

!-800-436-7936

[crossroadsec]

I'm SO sorry. Is she able to function w the lactulose? Is she on a strict diet?
A good GI can keep her going til you find a soecialist.  I have NO good advice re trials n drugs. But I have 2 sisters who have been my lifeline this year. Thank you for sticking w her n being an advocate. I know it's hard, but she can't fight for herself. I hope someone will show up here w some good leads for you.
Take care, Karen :)

[lilsis424]

Her liver doctor has pretty much written her off.  She never calls her back and I think she doesn't want to bother since there is no other treatment for her.  Anyone who knows of a fantastic hepatologist working in the suburbs or detroit-metro area PLEASE give me the docs name.

[orphanedhawk]

I think these are questions which should be addressed to her liver doctor.
Her condition sounds serious to me.

[lilsis424]

both times she ended up in the ICU.  Her platelets plummet to about 4, WBC non existent.  needed blood and platetlet transfusions.  ended up with hepatic encephalopathy.  Ammonia levels very high.  Now she is on lactolose daily and her diabetes is high and never used to be a problem.  

[1oftheclub222]

what do you mean by rejects it?  does she get sick and vomit?  Does she have a bad reaction like a rash or something?