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11/26/2009 12:39 AM

My mothers condition

mommysgirl86
Posts: 4
New Member

Hi, everyone.

First off, let me say.. it feels amazing to be a part of such a wonderful group of people. This group alone gives me hope.

My mother has been having all of the tell-tale symptoms of cirrhosis for a while now. Just recently she's developed ascites and swelling in her legs. she's been experiencing jaundice for some time.

She went to the E.R because of the ascites. She was in denial until this recent E.R visit, she went in complaining of indigestion/gas.. turns out it's cirrhosis. They discharged her from the E.R that night (is this a good sign?) with no medications, just a strict diet.

We have an appointment in a week to find out the severity and other details of her condition. She is 46 years old and has never been a drinker. Is there a better prognosis for those that didn't aquire the disease from alcohalism, or is it all the same?

I have no clue what to expect. My mother is my rock. I cannot sleep at night and when I do finally sleep I'm awaken every hour short of breath. I can't stop crying and I'm calling her every hour.. most of the time sobbing, when I really need to be staying strong for her. She is very upbeat and optimistic.

She has no health insurance. This leads me to believe that '' they're '' just going to let her die. Is there hope?

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11/26/2009 02:57 AM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

mommysgirl,

Welcome to the group. I know its scary Not knowing what is going to happen But there is a lot of hope.

I doubt that they sent her home because of the lack of insurance ,First of all that is illegal.

But mostly they really can't threat cirrhosis in the Hospital ( Except for emergency complications.

Cirrhosis is a long road. I always suggest that patients keep copies of all test results.She will use them a lot later on.

It's good that she has a appointment with a Dr. to find out what's going on.

Cirrhosis caused by alcohol is actually easier to treat in some ways. If the person stops drinking the liver will usually recover enough to live a normal life.However stopping drinking is often impossible for some.

Once cirrhosis has advanced there is usually no difference in the prognosis regardless of what caused it.

Don't worry about the insurance yet . there are other options (even for transplant)

Below is the link to my site for general information I hope it helps some.

Take a deep breath and enjoy the day.

http://livingwithcirrhosis.weebly.com/index.html

Gail


11/26/2009 05:54 AM
jademoon45
jademoon45  
Posts: 670
Member

Mommysgirl,

Hi my name is Ann and I was diagnosed in

March. You will hear alot of different

information so I suggest takin a notebook

to each visit and writing down who said what

and when and where. Was it the ER dr or the

hepatologist or her pcp etc.

The ER Dr.s job isnt what it used to be. Now

it is basically to stabalize, treat what they

can with a bandaid so to speak till you can

get to your regular dr. and if you dont have

one refer you to one.

Your Mom can get on SSD if shes worked in

the last 10 years and SSI of she hasnt this

will get her on Medicaid / Medicare. They

will need the ER records from her visit there

and any and all medical records from that point

on till treatment plan is put into place.

I dont know how it is for those not at deaths

door just yet. That is how i was. I had emergency

procedure done to save my life and the social

worker at the hospital i was in got it started

and all i had to do was the phone interview

as i couldnt make it to the office.

With Ascites she needs to restrict her fluid

intake and no salt. They may even put her on

a diuretic to help keep the fluid down.

Remember we arent drs. just patients and

caregivers and can only give you the benefit

of our experiences which may or may not be

your own. Everyone is different.

This is a great place with loving people

who will not judge you/ your mom. Feel

free to rant , vent, cry whatever you need

we are here for you .

Hope you have a Happy Thanksgiving!

Hugs,

Ann


11/26/2009 06:12 AM
southerngirl
Posts: 58
Member

I'm so sorry to hear about your mom. My mom was diagnosed in April and we never had a clue she even had any liver problems. She has probably had about 3 drinks in her whole life. She has a lot of other health problems that probably contributed to it: obesity, years on uncontrolled diabetes, heart problems. For us it has been a crazy 6 months and have unfortunately come to realize that her cirrhosis is very advanced. She had problems with ascites too and each time she would have a paracentesis it would come back faster and more fluid. She had a TIPS shunt placed about a month ago and that has helped the ascites. My advice to you is read, read and then read some more. It will really help you at doctor's visits and to keep track of her current condition. And remember that condition can change in an instant, which we have really seen lately. This is great forum and everyone has lots of good information. Good luck to you and your family.

11/26/2009 06:59 PM
mommysgirl86
Posts: 4
New Member

Thank you for the lovely responses! Suddenly, I don't feel so alone anymore.

I will keep you guys updated on her condition. It was fairly hard today, as this was our first Thanksgiving dealing with this disease and she couldn't eat normally but, she still cooked a huge meal. She's such a loving and selfless mother.

Again, thanks for the support and comfort. I wish all of you the best.


11/27/2009 06:04 AM
redz812
Posts: 24
Member

Mommysgirl86,

My heart goes out to you and your family. I agree with all of the above comments. Mom has got to get to her PCP or a gastro dr. They will sort out her condition and recommend the proper course of action.

I am assuming from your id that you are around 23 yrs old. To face this kind of medical crisis at such a young age is very difficult. You are in my thoughts...


01/11/2010 02:14 PM
mommysgirl86
Posts: 4
New Member

hi everyone,

just wanted to do a quick update on my mothers situation. i've been on an emotional roller coaster since she was diagnosed. it went from complete sadness and helplessness, to frustration/anger, to completely numb in a cycle.

she had a liver biopsy done a few days after christmas. the procedure went well and she had no complications. today, we went to her appointment for results of the biopsy and the news is something that i totally didn't expect. i had been reading about cirrhosis ever since she was diagnosed but, this was something that i had never read about.

turns out she has autoimmune hepatitis.. and her immune system is attacking her own liver. the good news is that there are pill to stop her immune system from attacking her liver.. so from what i understand, the prognosis is pretty good. although her condition is chronic, and cirrhosis is present, im extremely hopeful about the outcome of this. 7 out of 10 people go into remission, and life expectancy in people that are treated is that of the general population. i'm ecstatic about this and i'm praying for the best!!


01/11/2010 02:50 PM
southerngirl
Posts: 58
Member

That is wonderful news!!! Good luck and I hope things go well! Great way to start a new year.

01/11/2010 03:14 PM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

What great news! I am very happy for your family. Autoimmune hepatitis is indeed treated with medications. Usually a combination predisone and a immune suppressant like Azathioprine (Imuran).

below is a link where you can read more.

Keep us informed

http://www.bing.com/health/article.aspx?id=articles%2fmayo% 2f55ac7c27bd937d02959929eaa43dc26b.html&br=lv& q=autoimmune+hepatitis

Gail


01/11/2010 09:02 PM
jademoon45
jademoon45  
Posts: 670
Member

Wonderful for you all. I will be

keeping you all in my prayers that

she continues to improve with the

medication and has a long life to

make many more memories than you

already have.

Ann

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