Cirrhosis Support Group

I was diagnosed with cirrhosis 3 month ago. I am a 38 year old woman, who doesn't drink, and I have been put thru so many tests, and they still can not tell me why I have cirrhosis.

I am really scared, there is so much to think about and decisions that I need to think about that I was not ready to deal with at this time in my life. But now it is here. I feel really mad sometimes because I don't understand how this could of happened to me. I have 3 kids from ages 19-12 years old. The dr. says that in approx. 5 - 7 years I will start having some difficulties. I have varices starting, swelling...they can not put me on a transplant list until more things start going wrong. Then it may be to late.!

There are no support groups locally for me to attend. That is why I am here.

Thanks to all for your time.

Debbie,

Welcome to the group

I know how scared and angry you are right now . I didn't drink either. It just didn't seem right that I would be the one that ended up with cirrhosis.

But there are many causes of cirrhosis. Although it is important if they can find the causes it is not that uncommon.

Causes of cirrhosis include

Alcohol use

Hepatitis

Autoimmune hepatitis. treated with steroids

Nash ( usually caused by obesity, diabetes

Diseases that damage or destroy bile ducts

Inherited diseases. Cystic fibrosis, alpha-1 antitrypsin deficiency, hemochromatosis,

Drugs, toxins, and infections

Cryptogenic : unknown

Did they do a biopsy? Is you Dr. a specialist?

I always suggest that patients start keeping copies of ALL test results. It helps alot down the road.You are legally entitled to these but may have to pay for copies.

Now Let me say having problems in around 5 years is not uncommon, But most of the problems are treatable.

The most common problems are

Varices : treated with betablockers at first to lower the blood pressure. When they are at risk for bleeding they usually band them with small rubber bands.

Ascites : Fluid in the abdomen, Treated with a low sodium diet , then diuretics and when that stops working they can withdraw the fluid with a needle

Encephlopathy : a mental confusion caused by a build up of toxins that the liver no longer can clean from the blood.

High INR : causes problems with blood clotting.

No transplant center will transplant someone that is not advanced in the disease. But you can live for many years with complications.

The beginning stage of cirrhosis is called compensated

Stage A No complications

Stage B means you are starting to have complications, Most people are referred to a transplant center for evaluation at this stage

Stage C is end stage , This is where you have complications that are no longer responding to treatments.

If you know what your labs are

Bilirubin

Albumin

INR

Creatinine

How are your varices are being treated

do you have encephalopathyand how it is being treated

Do you have acscites and how it is being treated

I would be glad to help you figure your stage

I know the thought of having a life threatening disease is overwhelming . many people live in the "stage A "

For decades, dying from unrelated causes.

The most important thing you can do is to be as healthy as you can be.

Again welcome to the group and if I can be of any help please let me know.Things are not as hopeless as they seem

Gail

Debbie,

Welcome to the group I am sorry that I haven't been on the internet lately I was on vacation for 10 days. I am the group leader for the caregivers. My husband was DX with cirrhosis 2 1/2 years ago and after a long while of recopperation he is much better. Please don't think this is hopeless my husband was really, really sick and now he is so much better. I know you must be angry and I feel bad that this is happening to you but you can still live a long time with this illness and still be okay. Concentrate on good health and feeling better. There are no words that can do this for you, you have to do it for yourself as hard as it might be. I know that you know you have so much to live for like my husband he had to struggle to get better. What kind of symptoms have you had? Gail is a wealth of knowledge when it comes to treatment she is a great resource. Again, welcome to the group I hope you find the support you need here.

Alicia

Hi Gail.

Thanks so much for your reply. Yes, I have had a biopsy, and am a class A. Had endoscopy done, 1 varices. They say my liver is doing what it is supposed to be doing for now. I go every 6 months now for ultrasound and blood work to check for cancer and liver functions. I currently see a specialist from Indianapolis, Dr.Pound. He seems to be great. He did the first successful liver transplant in Indiana. Anyways, thanks so much for getting back with me. It helps just talking with people who know what your talking about when you say"cirrhosis", alot don't know the magnitude of it.

Thanks, Debbie

Debbie,

It's great that you are seeing a specialist that you like.

Being checked every 6 months is pretty common for stage "A" Most of the time they will do ultrasound yearly and endoscopy every year or two if nothing new shows up.

Having Cirrhosis is a horrible thing to go through. And as a patient I would never make lite of the disease but I also know that it's not hopeless.

Hang in there and if I can be of any help please let me know

Gail

Hello Debbie,

I completely understand how you feel and what you are going through. I was diagnosed with Cirrhosis approximately 6 mos ago as well - after months of misery and the failings of the medical community to make a concrete diagnosis because I didn't have insurance at the time. Now, I am finally seeing a specialist and the news wasn't great but it wasn't horrible either. I have end stage cirrhosis. Mine was caused by Hepatitis. Now, six months later after the ER doctors ignored my symptoms my life falls apart, repairs itself and falls apart again. It's a vicious cycle but it does tend to make one stronger!!! I'm 47 yrs old and so intend to see my grandchildren grow up and make lives of their own. I will not let this beat me no matter what it hands out. Yes, I'm still on an emotional roller coaster. One day you hear good things and two days later you get kicked in the teeth. It's a cycle I've found exists with this disease and it's no fun but what the heck - I will win!!!

Keep your chin up Debbie, it has it's moments but keep the faith!!!

I know this message may sound a bit uncaring but I've learned that take it for what it's worth and hold tight cause it's going to be a bumpy ride!!!!

Btw... my children are 19 and 21 and I have a 16mo. old grandson.

Thanks so much for your story. I am very sorry to hear it. You sound like such a strong person. I am expecting my first grandchild in 8 weeks. I also intend to watch him grow up. I know it will be a day to day battle, my biggest thing, is not myself, but the pain my children will have to go thru watching me. I think through it all, that is my biggest concern. Does anyone else feel this way?

Thanks again,

Debbie