Mother - liver cihrossis

Hi

I don't know if anyone has been through same thing with a loved one but would like advice if they have.

My mother was diagnosed with end stage liver disease 7 months ago, due to alcoholism, we were told that she may only have up to a year to live. Since her diagnosis she has been living with her sister and we all have been helping with her care and making the most of spending time with her. Due to great care, diet and no booze her liver stabilised
We all thought, even her GP, that she may live longer. My mother was never aware of how ill she is as her memory is poor and she gets very confused.

However 6 weeks ago she was admitted to hospital as she contracted staph aurea, blood poisoning, due to liver damage her immune system is poor. She was also diagnosed with a leaky mitral heart valve and the Doctors cannot operate as she is considered high risk. So she had an intense course of antibiotics, But now has endocarditis.

Whilst in hospital the right side of her face dropped they said it was Bells Palsy and she contracted another infection on her bowel! 2 days later the hospital discharged her without any warning or consultation
with the family! At least she is in better care but we were not given a prognosis and after my aunt insisted on speaking to a doctor they said they have done all they can.

We do not know what to expect, she is very breathless, her legs are swollen, on all sorts of medication which make her very moody. We all feel very let down by the hospital and would like to know if any one else can give us more realistic advice.

Sorry my post is long winded, but thank any one who will take the time to read and respond.

Post Edited (Bonnie1223) : 10/27/2013 2:44:25 PM (GMT-6)

Hello Bonnie. Sounds like your mom is going through a tough time right now. It's great you have such a supportive family to help her along the way. I myself have Cirrhosis due to alcoholism but haven't experienced any of the other issues you mentioned she's having. Hopefully some of the others will be coming by soon to share there advice on this situation.

I know that when patients experience other often unrelated issues with liver disease it's not uncommon for them to focus on getting those issues straightened out first. No sense in giving someone a liver when the rest of the body is in such a critical state. Although some issue's can increase her potential to get a liver but they are generally related to issues surrounding the liver. Cancer of the liver in mild cases can create a bigger chance of urgency to replace the organ completely.

I had issues with the first hospital I was admitted to when diagnosed. My family made sure I was transported to another hospital 45 minutes away to get proper treatment. I also had a horrible G.I doctor and his services was terminated pretty quickly also. They are there to help you and if they aren't being thorough, respectful or just plain lazy then fire there butt's and get help elsewhere. Which brings me to my next question. Is mom being seen by a Hepatologist? if not get her to the nearest one available. What medications are they prescribing her currently? How old is she? Is she experiencing abdominal fluid build up (Ascites)? All these questions will be helpful for us to understand whats going on. We aren't doctors of course but we have a collective body of people who have experienced real world issues with liver disease, Maybe we can help you get her situation figured out.


Ziff

Bonnie, welcome to the forum. Your mom appears to be quite ill. I do question some of the medications she is being given. Eye drops for Bell's Palsy?? I don't see how that would help. The little improvement she had was likely due to her getting sober. That is vitally important. She really should be seen in a center that does transplants, even if she is not eligible for one, as they have the best hepatologists. Get her the best care and she could live quite longer than expected.

If there really is no hope, call in Hospice, as they are very supportive to the family and patient and are the best at managing pain.

Hugs,
Connie

Oh Bonnie, I'm so sorry to hear about your Mom. I sounds like she is very very sick. Spending time with her is so very important especially since she may not have much time left with you all.

If she is definitely NOT a candidate for transplant and if her other systems are failing, well, have they suggested Hospice care?

I lost my own Mom way too young and it gives me great peace to know I was with her and that my sibs were all around too.

My heart goes out to you that there is a rebound coming and she can have more time.

Hugs,
Mama Lama