new to cirrhosis

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smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 12:28 PM (GMT -7)   
Hi, I've been reading posts hear since mid September, and I'm glad I found you. Everyone here is so kind. I've received a great deal of info from you.
 
My mother was diagnosed with cirrhosis after Labor Day, and had no clue she was sick until her ascites forced her to see her doctor. She was hugely swollen. When the GI doc did a scope, she found Esophageal Varices. Admitted to her to hospital, where she got terrible pneumonia. Let her go home with oxygen. A week? later, started having rectal bleeding. Nice. Back to the hospital for more banding, but thank goodness colon is fine. There for over a week. GI doc said that there is too much scarring, and she'll need a transplant. She said at the follow-up that there was no reason to do a biopsy; they only do that when there is something to fix, and this can't be fixed. She has been drained twice. She's miserable almost all the time. She is very weak. She's taking Aldactone and Lasix. Oh yeah, she has diverticulitis, too.
 
I'm going with her to meet the transplant team, which I assume includes the hepatologist, on November 11. I don't know what to expect next. My sister and I have vounteered to be donors if possible. My sister stays with her alot- in the hospital and at her house- because my mom doesn't want to be alone. I live four hours away from them, so I don't get to be with her as much as i would like. So I have been researching everything, trying to do something that will help her. I pass on the info to her. I feel very helpless, though.
 
Today she couldn't talk to me on the phone, because she was in too much pain. I try to tell her what she's supposed to eat, and not eat, but I don't know if anyone is really listening. I think everyone is in shock. smhair
 
She's 58 years old, and has been healthy her entire life. They don't know yet what caused this-just said she was in the 4th stage of cirrhosis, whatever that means. Said she does not have hepatitis. Oh yeah, she doesn't have insurance, because she is a stay-at-home grandma for my other sister's kid.
 
Sorry for such a long post; it just feels better to get that all out. Thanks for 'listening'. If anyone has any thoughts, please share. Thanks.
 
Susan
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/2/2008 1:33 PM (GMT -7)   

SmileySue, welcome to the forum!  I am so sorry that your mom is in such bad shape.  Where is the transplant center where there will be a possible transplant?  Your mom should have no trouble getting Medicaid at this point.  Someone else can apply for her and the initial application can be done online.  Does your sister that is near her have Power of Attorney?  If not, she needs to get it so that she can obtain medical records and get info from the docs, as well as make medical and legal decisions on her behalf, if your mom is unable to do so.  You don't mention confusion or odd behavior, so it doesn't sound as though she has encephalopathy (caused by high ammonia levels.)  Much of her pain can be attributed to the diverticulitis, particularly if she doesn't follow dietary restrictions.

The designation of Stage 4 cirrhosis means that it's end-stage...the worst.  That is why a transplant is being suggested as the only possible treatment at this time.  So that is where the focus should be.

There are others here who have gone through transplant or whose loved ones have been transplanted, so they can offer more info and support than I am able to.

Hang in here!


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/2/2008 1:34 PM (GMT -7)   

Hello Susan and welcome to HealingWell.  I am glad you found us too.   This disease is not only hard on the patients, but the family and caregivers get their share of the enormous stress that goes along with it. 

Has she applied for Social Security yet?   If not ..........she needs too.    You are doing the right thing.   Getting educated on it is the best thing that you can do.   So you get an idea of what needs to be done and what may come down the pike.     

 

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.


smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 2:50 PM (GMT -7)   

Connie and Pink Grandma,

Thank you so much for your suggestions and support. It means a lot. She will be going to the University of Kentucky. That's the closest hepatologist, and still a couple of hours from her home. She doesn't seem to have the encephalopathy yet, thank goodness. I've heard her say one thing that didn't quite make sense, but that's all so far.

I don't know much about the financial part of this, so I will make sure that she gets the power-of-attorney. She hasn't gotten Social Security or Medicaid, either. I heard that they won't do a transplant if you don't have insurance. Is there any truth to that?

Susan


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/2/2008 5:07 PM (GMT -7)   
Susan, I don't know if there's any truth to that or not.  However, Medicaid should be a "given," if she's sick enough for a transplant.  Of course, she (or her POA) needs to apply for it.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 5:09 PM (GMT -7)   
Well, this evening my mom went to a clinic with bad chest pain, and they sent her to the hospital for dehydration. Have done chest x-ray, and CT scan, and we're waiting to hear. Ugh!! I really feel bad for everyone who has to go through this. It's horrible! shakehead
 
Susan

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/2/2008 6:22 PM (GMT -7)   
Welcome to the forum Susan. I am so sorry that your family is dealing with this horrible disease. It is very heartbreaking. You have found a great place for support and information. Everyone here is very caring and helpful. I am so glad you found us. I will be praying for your mother and your family.
Butterflythree
 
There is always hope!


smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 6:36 PM (GMT -7)   

Butterflythree,

Thank you so much. I appreciate everyone's kind words. And prayers would be appreciated, too.

Susan

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/2/2008 7:26 PM (GMT -7)   
Susan,

I, too, am glad you have found us!! I am so sorry to hear about your mother. My husband was diagnosed with stage 4 cirrhoses and HepC 4 years ago. He is now on the transplant list waiting for a new liver. He, too, had no insurance and I STRONGLY recommend that you start the process of getting her applied with Social Security.....once she is approved, she will automatically receive medicaid benefits and at that point, they will accept that for transplant, etc. At the hospital, there should be a social worker that can walk you through the process and help you get through that process. If it weren't for the social worker this last time we applied (we were denied a couple of times before), I think I would have pulled my hair out. She was a very key person in that process......

My prayers are with you and your family.....hang in there!!

okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 11/2/2008 8:33 PM (GMT -7)   
Susan
I'm sorry you and your family are going thru this.  My husband had a transplant last Oct.  When they did the transplant they found a very cancerous liver.  A big suprise for them.  A biopsy was never done because they "knew" what was wrong with him.  The surgeon told me later he would have went to the top of the list a lot earlier if they had known he had liver cancer, as it was  it was too late.  The cancer had spread and now he is dying very painfully and most generally with a very bad attitude.  If you get to talk to a good doctor you feel comfortable with,  see about getting a biopsy, some will do one and some won't.  I hate to say such scary stuff, but I get mad sometimes, because I asked about a biopsy and they  didn't think they needed one.  This is a great site with some very educational post.  Take care of yourself and spend time with your mother as you can.
Helen

smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 9:22 PM (GMT -7)   

Mer,

Thanks for sharing. I will get started on the Social Security as soon as possible.

Right now, she is in the hospital with a possible blood clot in her lung, and very low blood pressure. Does anyone know if this is related to the liver? Still waiting on a call from my sis. It doesn't sound good.

Helen,

I am so sorry to hear about your husband. Thank you so much for telling me that. I will find out about the biopsy.

Hanging in there,

Susan


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/2/2008 9:41 PM (GMT -7)   

Susan, I'm not sure if the possible blood clot and low BP are related to the liver; however, when the liver goes bad it can affect many other organs...usually the kidneys, brain, and esophagus.  It can also affect the blood's clotting ability. 

While in hindsight it would have been good if Helen's husband had had a biopsy so they would have known about the cancer, it is not always necessary.  I had an ultrasound which detected my liver tumor, and later on I had a number of MRIs with gadolinium contrast, which show cancer in any part of the body.  I am free of cancer now, but still get follow-up CT scans with contrast and MRIs with gadolinium.  They did biopsy the left side of my liver at the time the right side was removed.  That is when cirrhosis was discovered, as previous to that I was always told that there was no cirrhosis.  Sometimes, a patient is not well enough medically to have a liver biopsy.  There is a big risk that goes along with it, too.  You can ask about it, but it usually is up to the hepatologist.

Prayers and hugs,


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/3/2008 3:52 AM (GMT -7)   
Susan

I am so sorry that you and your family are having to deal with this horrid disease. This is a wonderful place to express your feelings and concerns to people that truly understand what you are going through. Good luck on pursuing SSi for your mother. You might also contact the children and family department of your local health and human resources for any possible emergeny help and resources for medication.

Good luck on this journey

Lucy

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/3/2008 8:24 PM (GMT -7)   
Susan,

I would definitely try to push for the biopsy. What that will tell is exactly how diseased the liver is.......and also tell if there is cancer, et.....

I am so sorry to hear about your mother and the blood clot. Will pray that they get it removed with no other issues.....

Hang in there!

smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/4/2008 5:58 AM (GMT -7)   

Thanks, Lucy and everyone. You guys are great! My mother does not have a blood clot; they don't know what is on/in her lung. But, today they are doing a heart cath. I hope she is strong enough for all of this. She sounds weak and very upset. She can barely talk to me on the phone. I'm sure she feels she's going to die, and I hope that it's not because she's going to die. Please keep her in your prayers. Thanks.

Susan cry


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/4/2008 4:12 PM (GMT -7)   
Susan, Your mother is still in my prayers.
Butterflythree
 
There is always hope!


Raverbavers
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/12/2008 12:42 AM (GMT -7)   
Dear Susan: Our stories are so similiar. My 77 y/o mother was diagnosed with non-alcoholic cirrhosis almost 2 years ago. So advanced, upon diagnosis, she required emergency TIPS procedure due to esophageal varices. Followed up with a cardiologist weeks later - listened to her heart with stethescope and gave her an all clear except for a murmer. Almost two weeks ago - saw another cardiologist.. echocardiogram and heart cath revealed three main arteries blocked - 98%, 80%, and 60%. Blood pressure dangerously low (30's and 40's on the bottom), low platelet level, very anemic, bilirubin 4.7, AST 60...... Dr. reccomended double bypass with valve replacement and gave mother an 80% chance for success. She underwent her surgery two days later (November 1st). I wish I had found this site earlier and read the articles concerning the real risks and real success rates of cirrhosis patients undergoing heart surgery. I should have asked more questions prior to her surgery. My heart goes out to you ... its so hard to know what to do... I honestly will be praying for you and your mother...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/12/2008 12:48 PM (GMT -7)   
Susan, how is your mother doing?

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/17/2008 8:54 PM (GMT -7)   
Raverbavers,
 
    Thanks for your prayers; I'm soo sorry to hear about your mother. I really feel for you. I will be praying for you also.
 
Connie, we have been very busy. The thing in her lung-they still don't know. Some kind of nodule that apparently doesn't mean anything. Her heart is good. She was in the hospital for five days, where she started having encephalopathy. She said the Lactulose wasn't that bad. Yea! Sent her home; she was supposed to meet with the transplant team the following Tuesday, Nov. 11.
    I was on my way to KY Monday morning, and got a call from my sister, saying that Mom was on her way to the hospital by ambulance-she was hemorrhaging. I got there, and they had thrown her family out to work on her. Too many of them. They let me see her, so I could let her know that I was there, and that was really weird. Her eyes were open, but there was no life. They were just dark. That was very creepy. She was bleeding out, and her GI doctor showed up to check for esophageal varices. One or two was repaired, and they took her to ICU. Started vomiting blood again, did another scope. This time, figured it was gastric varices. Did a TIPS procedure, which took 3 1/2 hours. They finally transported her to UK to have an evaluation for transplant while in the hospital, since she can't stay out of them. I think they are going to do a biopsy. Her score (i assume MELD) is only a 12. They think she will be put on the list, but won't be close to the top.
    She has Cryptogenic Cirrhosis, because they don't know what caused it. I'll update as I find out more. Thanks everyone for your prayers.
Susan
 
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/17/2008 11:11 PM (GMT -7)   

Susan, thank you for updating us.  I'm sooo sorry that your mom is going through so much.  I hope that she will get listed for a transplant and that that will occur soon.  Sometimes the MELD score is overridden by the patient's dire condition.

My prayers are with your mom, you, and your family.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/18/2008 7:03 PM (GMT -7)   
Susan, I am so sorry to hear that your mother is doing so badly. I pray that she will receive a transplant soon.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/18/2008 9:39 PM (GMT -7)   
Susan just wanted you to know that your mom is in my thoughts and prayers also.........Take care...........
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.

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