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Posted 4/19/2012 6:27 PM (GMT 0)
Hello,

I am new to this forum but have been reading and felt compelled to post. My mom has Hep C. She was diagnosed about 15 years ago. She contracted it from a blood transfusion when she gave birth to my brother 36 years ago. She has done the Interferon which did not work.

The last two months have been hell. She has been in out of the hospital for various things. First with severe acid reflux, next for what they think may have been a stroke. Then they said her ammonia levels were 169. She did have a minor stroke but they just don't know when. She went back into the hospital with high levels again and they did get them back down to 69.

She is now taking the lactose syrup. She has been taking it for three weeks and her recent levels are 170 so they bumped her to taking it 3 or 4 times a day.

My mom lives two hours away and I am not with her during all of her doctor appointments. My step-father has been taking care of her. I don't think he is either capable of taking care of her or just in denial.

I am here for for advice, information, or an ear to listen.
Posted 4/19/2012 6:53 PM (GMT 0)
Hi Summer, Welcome to the forum.

As you are looking at posts, you have begun to educate yourself.

You know that liver disease is a bad one and advanced liver disease is rough.

ADVICE: Be sure your Mom is referred to a Hepatologist at a Major Medical Center that does transplants, the best in your state.

ADVICE: Try to go to the Hep appointment with her husband...but try really hard to make that happen. Maybe the center is close to you than to her and it won't be so difficult.

As the Hep C has its way with her, it can cause all kinds of damage...and has a bad outcome bar transplantation.

If your mother drinks at ALL, insist that she not have even one tiny glass of wine. She may not be eating well...encourage no beef, lots of fruits and veggies, low salt, and lots of water. Some use Boost or Ensure to add protein if the patient is not eating well.

There is a second med for the ammonia. Xifaxan. A Hep doc can prescribe it.

Your Mom may need help with insurance or Medicaid or Social Security Disability if your step-dad isn't good with that stuff. Be in for a rough ride, this could get difficult.

One of the moderators will be along to help you, but for now, you can look at the educational materials at the top of the forum or use the search feature, put in Ammonia or Hepatic Encephalopathy and see what others have said on those specific topics.

Best,
Mama Lama
Posted 4/19/2012 7:43 PM (GMT 0)
Thank you MamaLama, I am trying everything to educate myself.

Just from reading here I realized she should be seeing a Hepatologist. I live in Philadelphia but she live in New Jersey. I am going to look in the major hospitals here since she does already come up here for some doctors.

I am going to her next GI appointment on May 3rd and I am going to ask him about seeing a Hepatologist.

I am just starting to realize what the outcome might be and it's breaking my heart. My mom is my best friend and this is unimaginable to me. Not to take away how anyone else feel's about their mom.

My mom did drink until her first episode in the hospital. She quit smoking at the same time. So she hasn't had either since January. I can't remember if my step-dad said she couldn't have protein or not. I was floored by him telling me the stages of what might happen. I will check on that.

I will ask about the Xifaxan. I had read that earlier on here. Thank you!

My mom has been on disability for a while now. He has the insurance information down, I hope at least.

I appreciate you taking the time to reply. I will keep reading until my eyeballs fall out if needed.

Thanks again!
Posted 4/19/2012 8:04 PM (GMT 0)
Just talked to my mom she was prescribed the Xifaxan today.
Posted 4/19/2012 8:06 PM (GMT 0)
Hi, badsummer, and welcome to the forum. I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. There is a lot of great information in there about liver disease.

It is GREAT that she stopped drinking and smoking in Jan. These are things that must be done to qualify for transplant.

Her Primary Care doc would probably be the one to refer her to a hepatologist. The GI doc may feel that he can manage her disease. Just make sure that the hepatologist is in a large transplant center. I understand that the Univ. of PA has a good transplant department.

I also have hep C, which I contracted in the late 60s. It was diagnosed in '93. When you said that she did the interferon and it did not work, did you mean interferon alone or "the combo" of interferon and ribavirin? Also, there is a new treatment on the market that is showing great success in genotypes 1a and 1b--very high clearance rates. You should try to find out her genotype and if she would qualify for this treatment.

Untreated hep C can lead to cirrhosis and liver cancer. I've had both and due to my last assault of liver cancer, I had a transplant last Oct.

It's possible that with treatment she could make a turnaround.

Please keep us posted on her progress. If you have any questions, feel free to ask.

Hugs,
Connie
Posted 4/19/2012 8:17 PM (GMT 0)
Thank you Connie. I am so proud of her for quitting both. I never thought I would see the day she quick smoking.

She did two different treatments. I believe the last one was the interferon/ribavirin.

I do not know her genotype but do know that it is the worst one.

Do I say that is good news on your transplant? I don't want to say the wrong thing. I hope it will help you lead a long and healthy life.
Posted 4/19/2012 8:18 PM (GMT 0)
Xifaxan worked wonders on my mom. Hopefully your moms co-pay will be minimal, as Xifaxan is very expensive but well worth it. To reinforce what everyone else has said, definitely find a hepatologist as they are the experts. The liver conditions can change rapidly, as many of us have personally witnessed. Be sure to take time to care for yourself during this time as well. it is a major rollercoaster ride for the sick ones and their loved ones.

Make sure your mom stays on track with the lactuloase as it will help her quite a bit.

Sara
Posted 4/19/2012 8:24 PM (GMT 0)
BS, my new liver is working really well. Without it, I would be dead. It has been my misfortune to have some problems arise since transplant (healing problems, having to be opened up again, fluid retention causing huge blisters on my lower extremities, etc). But none of these is life-threatening.

Hugs,
Connie
Posted 4/19/2012 8:29 PM (GMT 0)
Thank you Sara, I pray that it helps her. The worst is seeing her get upset when she is confused and scared.

Connie congrats on your transplant! I am glad it saved your life!
Posted 4/19/2012 8:37 PM (GMT 0)
BS, thank you. Good that the Xifaxan was prescribed. If the HE can be controlled, it will benefit everyone.

Hugs,
Connie
Posted 4/20/2012 2:36 PM (GMT 0)
I found out more. My mom is in stage 2 of hepatic encephalopathy. It's like pulling teeth to get answers. She has another appointment on May 3rd which I am going to and will be asking a lot of questions. If there is anything that you think I should ask please share. My first question is about a hepatologist.
Posted 4/20/2012 3:39 PM (GMT 0)
As I said, the GI will probably feel he can handle her illness, and may feel upset if you want her to see someone else. I don't know if your mom has an HMO, but they all require the PCP to do referrals.

Sorry I forgot to answer your question about your mom's genotype: When you say she has "the worst kind" it probably means the most difficult one to treat. That would be genotype 1a and 1b. So she may be a good candidate for the new 3-drug combo, or they may feel since the other treatments failed her and her HE is advancing, it's best to head towards transplant. However, the Lactulose and Xifaxan should take care of her HE. If not, the dose of Lactulose can be increased at will.

Do keep us updated.

Hugs,
Connie
Posted 4/20/2012 4:52 PM (GMT 0)
Yes Connie, she has the most difficult to treat. Not sure if it's 1a or 1b. I hope her levels go down. Her blood work that she had done of Monday came back at 170. When she was in the hospital it was 130.
Posted 4/20/2012 5:51 PM (GMT 0)
What specifically was 170 and 130? The lab tests showing liver function will be the AST, ALT, GGT, PT, and bilirubin.

Since the new treatment is targeted for use by 1a and 1b, someone needs to find out what the doctor thinks....whether she is a good candidate for it...or if they are going to evaluate for transplant.

Have you read the info in the Hepatitis Resources folder? You can learn a lot there.

Hugs,
Connie
Posted 4/20/2012 5:52 PM (GMT 0)
 

Summer,

So her Ammonia was 170?

If you read back through the posts, you will see folks posting the ammonia numbers, but to tell the truth on this one, each person handles ammonia differently. And the test results seem to vary depending on how long the speciment sat around before running, or if was put on ice, etc.

Instead, the Hepatic Encephalopathy itself is the key. If she is handing her affairs in a reasonable way, great, if she is shrieking that the cat ate her pocketbook, she is in the loony stage.  Some tell us their numbers and then type a complicated post with numbers with well constructed sentences...those folks are handling their ammonia well.  They increase the lactulose if the crazies or angries are really bad.

One poster told me he decided how much lactulose to use depending on whether he had the patience and dextrerity to play computer solitare!

My poor Mike had the dropsies.  He couldn't get a straw to his mouth without dumping over the apple juice some days and then was furious at me, the straw, the juice. It was quite a show. On dropsy days, more lactulose!

A person's mental status can get quite confused.

Best,

Mama Lama

Posted 4/20/2012 5:57 PM (GMT 0)
I have been reading here non-stop today. I am trying to gather as much information so that I can ask the right questions on her next doctor visit.

Yes, her ammonia level was 170. She has forget fullness but she is still with it. When she went in the hospital the first time we and the doctors thought she had a stroke. She couldn't walk right, talk right and failed some basic test like counting backwards.

Thank you all for your questions and responses. I truly appreciate it.
Posted 4/20/2012 6:04 PM (GMT 0)
Please know that H. E. is reversible.

At transplant, Mike became completely normal again.

He was barely awake, had a central line in his neck, tubes all over, but they'd removed the vent (thank goodness).

He whispers to me that he can't find his hearing aids (I had them in my purse) and he couldn't quite hear the nurses. Did Obama or Osama die? It was, of course, May, 2011!!!!! That man hadn't been able to remember what day it was or how to pee standing up, but there he was...talking world politics DAY 2 of his new life.

And he was much better after some time on the xifaxan. Less argumentative and grouchy.

Carol

Post Edited (MamaLama) : 4/20/2012 12:22:33 PM (GMT-6)

Posted 4/20/2012 6:21 PM (GMT 0)
That gives me hope. I will never give up on my mom. Thank you!
Posted 4/20/2012 9:36 PM (GMT 0)
Summer, thanks for clarifying what the number was. It sounds like she is pretty with it right now. I don't believe an ammonia level was ever run on me. Mayo went more by how I was behaving and handling my huge schedule of tests, my coherence of speech, etc.

Hugs,
Connie
Posted 4/22/2012 1:27 PM (GMT 0)
She is good right now with her level that high. Last week she made me a little nervous but hopefully starting the new medicine it will help.

She is going to her neurologist on Tuesday and I am planning of asking him for a recommendation for a hepatologist. Her neurologist is very good and at a major hospital so I would trust his recommendation but will still do some more research. My father thought the GI doctor she is seeing was good until I did some research on him and found out he had a huge lawsuit against him for not diagnosing a patient with stomach cancer. So now my step-dad is on board with getting her a new doc, thank God.

I am so happy I found this forum. When we do find a new doctor I will have plenty more questions. Thank you for listening to me and giving me hope.

I don't loke to talk about the tests and other things with my friends or family because I will just get upset. Talking about my mom in this condition with them just makes me cry. Talking here is making me think clear and know I have to do what's best for her.

Thanks!
Posted 4/22/2012 1:47 PM (GMT 0)
Summer,

I feel the same way. This forum helped me more than therapy.

This is a unique journey, but we liver patients and caregivers are on a path others can't relate to.

Hoping for the best for your Mom.

Carol
Posted 4/22/2012 2:04 PM (GMT 0)
BS

When I was first diagnosed with cirrhosis in 1990 I was living in NJ and was referred to the Liver Center at the University of Pa. I was treated there until I moved to Chicago in 1992. I found them to be very professional and knowledgeable.

When I moved, t hey recommended that I go to Northwestern for my care. I have been there ever since.

Susie
Posted 4/22/2012 3:08 PM (GMT 0)
Carol this forum has helped me already. I appreciate the people here that have gone through hell to still be here helping others. I will keep all of you in my prayers.

Susie my mom lives in NJ. She use to see someone at Penn until she moved down the shore. Her doctor retired and she started seeing her current doctor for maintenance since she wasn't having any problems. Her neurology doctor is at Jefferson and I was planning on getting his input for a new doctor. Penn is a great hospital ( I use to work there) but I also want to check Jefferson and Temple. I have some friends that are in all three hospitals so I am trying to get as much input as possible. I am just not sure how you go about finding the best. I realize she will need a transplant and I am trying to find out which one is better for that.

Thanks!
Posted 4/22/2012 5:28 PM (GMT 0)
Summer, why is your mom seeing a neurologist?

You might want to check out this transplant center: http://www.einstein.edu/yourhealth/liver/?ibp-adgroup=LiverRegional&gclid=CPvSqs3_yK8CFQaEnQodxQEcaw

(Just copy and paste into your browser.)

Hugs,
Connie
Posted 4/22/2012 6:18 PM (GMT 0)
Hi, Mayflower. Nice to see you here. I see that you post in some other forums. Do you or someone you know have liver disease? If so, feel free to start a new thread and tell us about it.

Hugs,
Connie
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