Stage 4 Cirrhosis

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dream chaser
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/21/2008 6:08 PM (GMT -7)   
Hi, my mom was diagnosed with Autoimmune Hepatitis about 8 years ago. She now has cirrhosis stage 4 I believe. I have read alot of the posts here and it has comforted me to know that there are people who know what I am going through. I just lost my dad on May 7th and even though we have known that she is at the end stage I am just not ready. She has varisees caused by the cirrhosis and she bleeds from the rectum.  She has had 3 major bleeds in 2 years until now. She was hospitalized for major bleeding 3 weeks ago. She went into the hospital on Wednesday did good until Thursday night then started hemmoraging was given a transfusion and put in ICU. They sent her via lifeflight to Iowa City where she was told that she has a blood clot in her portal vein so she is no longer a canidate for the TIPS surgery, or a liver transplant. They cannot do the coil procedure either. Basically they said they will treat symptoms and band varisees. She stayed in the hospital for 7 days went home for 3 days then went back for bleeding for another 3 days. She is 69 years old lives by herself and wants to stay independent. She has acsites (if that is how you spell it) is on like 30 meds. I love her alot and don't know that I can take loosing her so soon after my fathers unexpected death. But I am also scarred of her going through these episodes. She refuses to live with anyone and wants to remain independent. Since she went into the hospital she has developed new symptoms. She never was nauseated before but is now. She also has low blood pressure and is light headed alot. Everything she eats seems to go straight out the other end. She has dropped 10 pounds in the last 3 weeks but her stomach keeps growing. Never has she went into a coma. Can anyone tell me if that is what I am to expect next? Is it a coma? Doctors just sent her home with only a couple restrictions. No lifting or walking long distances. Don't know what to do or how close to the end she really is. Any help is appreciated. Thanks

Post Edited (dream chaser) : 6/21/2008 7:14:55 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/21/2008 7:10 PM (GMT -7)   
Hello Dreamchaser and welcome to HealingWell.

First of all please accept my sincere condolence on the passing of your father. There's nothing anyone can say to ease your pain but please know that many people have you in there thoughts and prayers.

I am so sorry that you have to go through this with your mom.

Is she on Lactolose and lasix and/or spirolactone? If so, the Lactolose is needed to help keep her ammonia levels down. But it causes the diarehea to get rid of the toxins. The lasix/spirolactone is needed for controlling the ascites but they can cause the low blood pressure and light headedness.

At this stage she needs them to stay alive.

As far as....how long? or what's next? No one can really say. Everyone's experience with this disease is slightly different. But with the doctors not putting many restrictions on her tells me that they probably don't think that she has a whole lot of time left. And with all her symptoms it really doesn't look good at all.

As you probably already know she really should not be staying by herself at this point. If she has a bout of encephalopy when she's alone no telling what she could do. You have probably read the posts about running around naked. But that is the funny part. The rest of the things that they do are not funny or safe.

Stick around we have a bunch of educated compassionate people here.


Please try and take care of your self. You have been through a lot and still have a hard journey ahead.

Lot's of thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/22/2008 1:22 AM (GMT -7)   
Dream Chaser:

So sorry to hear about your dad. Now dealing with your mom has got to be really hard on you. I was diagnosed with stage 4 as well. The Dr.s did'nt put me on any restriction either. I put myself on restrictions ,take lactulose which I am allowed to regulate myself, take spirolatone, and keep a sort of vegetarian diet. My ammonia levels have ranged from 169 to less than 14. When it goes up I get light headed and dizzy and my husband says I do ,and say strange thing. At the time it seems normal to me. But he just say take more lactulose. I know what he means . At this point that seems to be my symptom other than a little ankle swelling. Thank God Taka Care get rested. I will add you to my list of prayers.

kipper04
New Member


Date Joined May 2008
Total Posts : 17
   Posted 6/22/2008 6:11 AM (GMT -7)   

Dreamchaser,

Sorry to hear about your father, and what a thing to be going through with your mother now. I think Pink Grandma is right in saying that every person is slightly different in this end stage disease. I lost my mother to it May 17th, and wasnt really educated on what could be expected. Pink was also right in saying that when they release you from the hospital with not many restrictions and no clear prognosis it doesnt look good. No one can tell you what will happen now, I had no idea about the coma until my mother went into it and after a week died.She never experienced the varicies that everyone talks about,  but bad ascites. I agree that she should not be left alone with the amonia levels they could shoot up at anytime and is very dangerous. My mother had a amonia level in the afternoon of 36 went to bed normal and went to wake her up the next morning 9 am and she was in a coma. Got her to the hospital and her amonia level was 306, and never came out of it. So I dont think under any circumstances you should leave your mother alone. My mom also fought for her independence, but realized she should take the help that is there. I hope your mother realizes the same!

Take care,

Kipper

 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/22/2008 3:10 PM (GMT -7)   

Dream Chaser, I want to welcome you to the forum, and also offer my condolences on the loss of your father.  I'm sure it must be very, very difficult to now be dealing with a mother who is so ill.  Everyone is different, so nobody can say for sure how long she has left.  You might try pinning a doctor down as to whether an educated guess would give her 6 mos. or less.  If this is the case, you can get Hospice involved.  Some have nurses come to the house and some have actual residences where the terminally ill can stay.  The fact that the doctors have placed no restrictions on her is an indication that they think she is terminal.  sad   

When I was diagnosed with liver cancer, I asked a liver surgeon/hepatologist how much time I had left.  He didn't want to answer, but I told him to just give me an educated guess.  He said, "Six months, without treatment."  That was enough info for me to know I needed to have something done.  I underwent available treatments and surgery and am here over a year later, still cancer free at 65.

Hugs,

Connie


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/23/2008 6:27 AM (GMT -7)   
Dream Chaser
My deepest sympathy on the loss of your father. I know it is difficult losing the people that we love and combined with the illness of your mother I know this is truly a difficult time for you. I agree that this disease is unique to each and everyone of us but it is very important that your mother is not left alone at this time. It would be wonderful if Hospice services could be started if needed at this time. I know they were angels on earth when my father was ill with congestive heart failure and were wonderful with him and me until the end. I hope you continue to use this forum for support. My thoughts and prayers are with you.

Lucy

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/23/2008 5:31 PM (GMT -7)   
Hi Dream Chaser,
So sorry about your Dad. I took care of my father last year and he passed on Oct 7.
My Mom is with me now. She has COPD. She has Hospice. I wanted to say that one way around the 6 months diagnosis is to ask her Dr. to right an order for a Hospice Co. to do an evaluation. That way they can decide to list her or not. Some companies are more leinient than others. She would still be independant and would also have help, companionship, supplies, a nurse, and a Dr. They will then evaluate her later and sign her up again if needed.
Carol
 

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