ESLD---Looking for answers, support, Hope??

The smartest person I know is also the dumbest person I know. My sister! From the outside you would say she had everything a good education, made over 6 figures and traveled all over. From the inside I'd say she maybe Bi Polar and lived a tough childhood and didn't like her new job she took. Regardless she drink heavy. 3 years ago she ended up sick and in the hospital and the Dr (at hospital) told her she wouldn't make it another year if she didn't stop. I assume she as least slowed down. about 2 years ago she loss her job and her health insurance. She tried rehab about 3 times during this period but was hard without an income. She did complete one 30 day program and started drinking about 15 days after she got out. Last April she had to go to the ER and they she wanted to leave as soon as she got there. The Dr stated that she needed admitted she had liver cancer. She told them that she didn't have any insurance not to do anything extra just take some fluid from her stomach. In August she went back to ER had more fluid drained and they told her she needed to see about a liver transplant. Her blood no longer clots. She went to a GI for first and only time a week later. In Nov or Dec 2011 she went to ER had more fluid removed. 10 units liters--however they take it but nurse said it was the most she had seen removed from someone. I saw her for first time in a couple years recently trying to help her relocate. She is a skeleton with huge stomach. Muscles are wasted. Skin is kind of rusty orange color with huge bruises everywhere. Face and eyes very yellow from jaundice. She also has moments of mental confusion and does not sleep. I got her to apply for SSDI last week. I asked her why she doesn't go to a Dr. repeatedly she yelled at me that she was a 23 score and she had to get to a 17 to get on transplant list. I asked her about going to see a Dr now and she told me she doesn't have the luxury of going to a military base like me. I asked her if they did a biopsy to decide that she had cancer and she said no. From everything I have read she is in ESLD. Getting answers from her is like pulling teeth. She told me that she is not in pain although she looks like the walking dead. I know that she hadn't touched any liquor in the 10 days that I was with her. She refuses medical care and I don't know what to do, what to expect if she has any chance at all still.

Post Edited (Worried2012) : 2/23/2012 5:34:07 AM (GMT-7)

Hello, Worried, and welcome to the forum. It sounds like your sister will need a transplant to survive. However, Mr. Ziffle was in a similar position and managed to escape a transplant and death. He is right about the MELD score. A 23 can get a transplant if a compatible liver is found. I was transplanted at a MELD of 25 because I had liver cancer. I'm wondering how your sister was diagnosed with liver cancer? Usually, it's through an MRI with gadolinium contrast, or an ultrasound if the tumor is large enough. She should be taking Lactulose for her confusion.

I do believe that your sister will succumb to her disease unless she completely stops drinking and gets medical care. The desire to do whatever is necessary to live is up to her, though.

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. It contains info on various types of liver disease, not just viral hepatitis. You might also want to check out the Caregivers thread for emotional support and more info.

Hugs,
Connie

W2012
So sorry that you sister is ill. This disease takes down smart intelligent and educated folks as well as those not so much. If she is as ill as it sounds, she likely has HE and won't make sense much of the time. That will be frustrating to you, until you realize it is the disease and some of it she can no longer help (especially without lactalose to help get rid of the body's toxins).

You might find out more if you could accompany her to a Dr's appt, if she will go. With SSDI she should also be eligible for medicaid, which will pay for much, if not all, of her medical care, liver transplant, if she qualifies...and even nursing home care, if she can no longer take care of herself or becomes wheelchair bound.

 
Although it is possible to turn things around (see A. Ziffle), sounds like she is on a downhill spiral with no plan for the future. She may be depressed and may need anti depressants. If she realizes the seriousness of her disease, depression would be expected, I would think.

It will be ugly to watch this happen to your sister and there is only so much you can do. She has to want help. She may be past the point where she has the ability to help herself. (Mentally my hubby became unable to plan, complete tasks, etc...if it takes more than two steps he usually can't do it.)  I was lucky in that he would let me make most of the decisions for him.

Join us on the Caregiver's thread. It is for all that are dealing with ESLD and a loved one.
Angie1953

 

Post Edited (Angie1953) : 2/23/2012 9:14:30 PM (GMT-7)

Thanks for all the information and encouragement.  Can we force her into treatment? Her husband is going to lose his job if he has to keep leaving work for her emergency's.  They need his job for the health insurance that should cover her preexisting condition come Nov.  (Not that I think she will have till then.)

There's so much more to this and I feel so loss.  I'd prefer a detox and a Christian based rehab and then a transplant however she'd have to agree and it takes funds.  She doesn't let anyone sleep at night so unless someone doesn't work it would be difficult to keep her which leaves me but that is the one place that she will not come....it's to hard....I guess my place is harder than to break into Ft. Knox. Please dear Lord help me.   Sorry this is tearing me up to no end. 

Every large city usually has a detox facility that costs nothing. However, there is usually a waiting list. AA is also free. But for both of these, you have to have willingness and desire to get (and stay) sober.

It is possible to have someone court-ordered to treatment through the Meyers Act. (In FL it's now called the Marchman Act and covers both alcohol and drugs.) It would take a relative plus 2 doctors to sign the paperwork to submit to a judge.

Hugs,
Connie