new to cirrhosis

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.

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

 

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............   

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.

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.

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!!

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

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

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

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...

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

 

Susan, I am so sorry to hear that your mother is doing so badly. I pray that she will receive a transplant soon.