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New to this site - Mom just found just found out she has cirrhosis, stage 3

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Posted 3/8/2008 3:26 AM (GMT 0)

Hi all.

I found this site while looking for information about my mother's condition. After reading for a while, it seems like you have all been through quite a bit.  I am hoping that this post does not offend anyone.  I know that not every case is the same, but I am only looking for a general idea of what to expect.

Anyway, Mom just found out the results of her liver biopsy this week, (stage 3 cirrhosis of the liver), but has not yet seen the doctor.  She has an appointment scheduled for next Tues.  Originally the Dr. thought she might have fatty liver, then NASH.  After other blood tests came back, he thought she had something called hemochromotosis (build up of iron in the blood that damages liver &/or other organs).  Then he did the liver biopsy and now we have the results and are waiting to discuss them with him.

Anyway, regardless of what is causing the cirrhosis, what I am now trying to find out is - what is the prognosis for this?  She doesn't seem to be taking this seriously but I am scared to death of losing her!  I know the doctor probably won't give me a straight answer with that question on Tuesday.  I am going to the appt. w/ Mom as she forgets a lot of things lately, (and really twists things around sometimes) even though she is only 68.  Is this a symptom of something bad?  She has signed a paper saying that it is OK to give me information about her medical condition. 

So this is the scenario - the nurse said on the phone (to me) that the damage done cannot be healed, but that if we want to slow down further damage, she needs to lose about 50 lbs.  From past experience, and recent comments, I know that she will not be doing so. 

So, that being the case - what are her chances of delaying the progression into stage 4 for very long???  I know I cannot do this for her and she needs to take responsibility for her own health, but I feel so helpless!!!  Any ideas - anyone?

Wren

Posted 3/8/2008 9:27 AM (GMT 0)
Hi Wren and Welcome to the forum.,

First of all I am so sorry that your mother and your family iare now having to live with this disease. Cirrosis is a scarring and hardening of the liver that can not be reversed. However the progression of the disease can be slowed down by living a healthy life style which may include diet. The most important thing is for her to follow her doctors directions and for youi both to educate yourselves on this disease. Go inot her doctors appointment prepared with questions. There has been many posts on here regarding amonia levels and the confusion/forgetfulness they can cause. Is this a recent development with your mother? If so I would bring it to the doctors attention. The only real cure for this disease is a transplant and hopefully your mother can be listed.
I will keep you both in my thougths and prayers.

Lucy
Posted 3/8/2008 9:59 AM (GMT 0)
Wren: So sorry to hear you are going through this. Hope you have someone to help you along. She has to realize that it's not going to get better. From what I have read mainly on this forum (it's Great) is that it seems as if every one seems to experience the symptoms at different points in time. She must realize she needs to help herself. You cant do it alone.
If she is not going to participate in the diet she will most likely deteriorate more quickly. I'm not on the diet to loose weight only to control the encephelapathy which gets quie bad if I dont take my lactulose at regular times and eat a low fat, low protein diet.Thats probably where she's at right now. The lactulose will help her regain some her memmory. But the diet is also a big factor. Since eating to much proteine builds up the toxins in the liver which have an affect on the brain. I got to stage 4 without ever realizing I was Ill . Hit me like a ton of bricks. The people ons this forum have been extremelly helpful . Most of them are care givers to their family members. My husband has been there for me 100% . He is the head I have lost somewhere. He definately has to go with me to my Dr. appointments because I forget everthing. I can tell you about names and things that happened when I was a 5 year old. But really have to think about what I did yesterday.. or wether I have taken my meds. I feel very helpless. They have given me no time table to reach transplant. I am on the list. Most Dr. s don't even quess how much time you have I've had about three of them tell me I could live like this for 5-15 years..... on the other hand could get deathly ill in 48 hours ,at any time. Keep on exchanging thoughts with the people on this forum . Your mom may want to vent too. Lots Of Luck june
Posted 3/8/2008 10:17 AM (GMT 0)
Lucy: How are you doing these days. Any news. I have to go in for my three month appointment for labs and a CT scan and to see the hepatologyst. Had hoped I could get labs and CT done here at home. But they have to see me in order to keep me on the list. Even though I really have nothing to say. Other than I cant sleep, and I have my foggy days about twice a week. We're still deciding wether we are going to drive or fly. The appointments are going to take just one day this time. Air flights are so expensive for just one day. But a 7 hour drive is no fun for my husband.Or for me because of my arthritis. I can't help him because for long distances I get extremely sleepy. Well one way or another my appointments are scheduled for Wednesday the 12th of March. Did they finally let you know how bad the cirrhosis was. and everything else. Take care Lucy I think of you often. june
Posted 3/8/2008 5:17 PM (GMT 0)
Welcome Wren, Sorry about your mom.
But it is very important for your mom to assist in her own healthcare. If she doesn't help herself there's not a whole lot that you can do for her to slow the progression. If she is up to it.... have her read some of the more graffic posts on the different symptoms of Liver Disease. As you know is not very forgiving. So each patient needs to do whatever they can to help themselves out. I know how frustrating it can be to try to help someone who will not listen. Been there and done that. Sometimes it takes scaring the you know what out of them to get them to start taking the disease seriously.

Good Luck and take care. We'll be here if you need information or just to vent.
Posted 3/9/2008 6:33 AM (GMT 0)

Hi -

Thank you all for your suggestions. 

Frustrated_n_wv - I already have tons of questions, but did not know about the amonia levels being linked to the confusion/forgetfulness.  I hadn't even heard about amonia levels until I started reading on this site yesterday.  Is that something they can check for in a blood test?   june17 - I hadn't heard about the lactulose until yesterday either.  I'll definitely try to read up on both of these more before her appt. on Tues. 

It is going to be a bit difficult mentioning something like confusion or forgetfulness at her doctor's appt because she has not recognized it or realized it is happening yet despite the fact that everyone else in the family has.  Actually I'm not even sure it is what you would classify as confusion - she just says or does the weirdest things sometimes and then when you ask her about it, she acts like it is perfectly normal.  For example, things that she has insisted on doing one way all of her life, suddenly have to be done differently, and when you ask her about it, she says "I've always done it like this".  Or yelling at my Dad because he "took" or "hid" something that she can't find, only to realize later that it is in her car.  Does this sound like the kind of confusion that is related to the cirrhosis or should we be looking for another reason for this weird behavior?  I'm wondering if I should call her doctor on Monday, before the appointment, to bring this up so that he is aware of it and he can decide how to approach it.  Maybe she needs other tests?

Pink Grandma and June17, you both mentioned that my mom may want to get on this site an either vent or read up on this topic for herself.  I wish she would!  Unfortunately, she does not have internet access and has always asked me to look up stuff for her and print it out when ever she needed something.  So I guess I'll have to print out some stuff from here.  Still, it is not the same as browsing through and reading it for yourself.  However, I've thought about trying to cook for her a few nights a week (to try get her away from the kitchen and all of her bad habits), maybe she can browse while I'm making dinner some night. 

My sister and I have noticed that she seems to be swinging from one extreme to the other - either she is convinced that she is going to die tomorrow and there is no point in trying (she is cleaning out old paperwork and getting everything in order.)  Or, if one of us tries to point out that she does have a chance, IF she follows the doctor's orders, then she cheers up and misses the "IF" part and goes into denial about being sick at all.  Maybe we just need to give her time to absorb all of this.

Thanks for letting me vent.

Wren

Posted 3/9/2008 2:18 PM (GMT 0)
Wren

I can understand your difficulty with bringing up your mother's confusion/forgetfullness in front of her. possibly you can talk to the doctor prior to her visit or a consultation of your own following her appointment. If not you may be able to ask him to run a check on her amonia levels without being specific in front of her. I am not sure but I doubt anyone that is begining to go through this believes that they are becoming forgetful or confused and it may help your mom undrstand what is happening to her body if the doctor explains it to her. I think that it is normal for your mom to fluxuate between "thinking she is dying" and "everything is fine. Acceptance of the magnitude of this disease is very difficult at first and it feels like you have lost all control over your own life. I hope her appointment goes well for the both of you and that you both get questons answered.

Lucy
Posted 3/9/2008 2:36 PM (GMT 0)
June

Hi back to you. Yes I finally was able to go into see my GI last week and he stated the cirrosis was in stage 1. Am very thankful that it hasn't progressed any further than that at this point. I see my hepatologist in May and he will have had to review the results also by then so I am hopeful that that his conclusions are the same. No additional medication for now which I am thrilled about, just some additional lab work during my normal monthly labs, to make sure I have no other abnormalities such as cancer develping. I know what you mean when your doctors are so far away. My hepatologist is five hours from here and it can be the longest drive. I am sure worse for you with artheritis and having to sit that long. Hopefully, you can afford the ticket and be able to fly, whatever you need to do to stay on the list is so important. Good luck on the 12th, I will keep you in my thoughts and prayers.

Lucy
Posted 3/11/2008 2:25 AM (GMT 0)

I can understand your difficulty with bringing up your mother's confusion/forgetfullness in front of her. possibly you can talk to the doctor prior to her visit.

Lucy,

I didn't think I would get a chance to actually talk to the doctor before Mom's appointment (it is at 8:45 tomorrow, Tues), so instead I wrote down my concerns and will try to get the receptionist to give the note to his nurse to it pass to him to be read before her appointment.  Maybe that will work - we'll see.  Basically, I said that I didn't want to offend Mom by bringing up the confusion/forgetfulness in front of her, but if he brought it up as a common thing that he wanted to test for or even one that he routinely tests for, then that would work better.  The other thing I said I wanted him to be aware of was that neither my mom or my dad seemed to realize how serious this was.  Mom hasn't bothered to start dieting because she wanted to wait until she saw the doctor on Tuesday.  Even though the nurse who gave her the test results told her to lose 50 lbs. And the doctor had previously told her to lose weight.  Now she is sicker than she thought and she is waiting until tomorrow to diet!  And my dad is in denial also.  It is like if they don't think about it, it will go away.  So anyway, I asked the doctor to please impress upon them the seriousness of the situation.  And maybe go into the details of what will happen if she gets to stage 4.  Like Pink Grandma said, "sometimes it takes scaring the you know what out of them before they will take the disease seriously"  Well, I am hoping the doctor will do that.  It may sound cruel, but if that is what it takes to get her to start to diet, and therefore prolong her life, then it has got to be done.  One other thing too - I asked the doctor if counseling might be appropriate to help her adjust to such a huge life changing event.  I think that she needs to find other outlets for her emotions besides food.  She also needs it to be able to come to grips with the fact that she has this disease and it is not going away.  I don't know if it would be covered under her insurance, or if we could find somewhere that is half way affordable.  But maybe Mom would try it.  I am not looking forward to this appointment, it is going to be very awkward.

Wren

Posted 3/11/2008 3:10 AM (GMT 0)
Hello Wren, That's a good idea about the note. Hopefully the doc will get a chance to read it before he sees your mom.
I do know how you feel about talking to the doctor in front of your mom. I think most caregivers are put in that predictment at one time or another.
I went to every appointment with my husband and learned fast that he was not going to ask any tough questions. So I did. Boy did we get into more than a few arguments on the way home.
I asked him, " How are you going to fight the disease with your head in the sand?"
But by far.........the very hardest question that I had to ask his cancer doctor in front of him was.........If there's nothing more that you can do for him what is his prognosis? The reason I am saying this is because.....In order to win the war you have to know who your enemy is, and what to expect from them. It's great that you are getting educated about this horrid disease. But unless your mom and dad is on the same page with the doctor and his orders
someone may be asking that same ugly question.
Let us know how the appointment goes. Good luck and take care.
Posted 3/11/2008 10:10 AM (GMT 0)
Wren

The note is a great idea I also hope that he gets the opportunity to read it before the visit so he can address your concerns. Pink Grandma is right about knowing who your enemy is and not being able to fight this with our "heads in the sand". I hope they really listen to all the information and directives that the doctor gives them, Wishes you the best of luck.

Lucy
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