Topic: possible liver failure...

Hi everyone -

Its been about a week since I last posted my introduction. My grandmother has been recently diagnosed with cholangiocarcinoma. As I have already mentioned the only treatment plan for her was palliative care. The oncologist did place 2 metal stents to drain the bile duct and liver duct to alleviate jaundice and make her more comfortable.

She has been at home for about 1 1/2 weeks now. She is taking 1mL of morphine 3 times a day to control the pain in her abdomen and furosemide to assist with the ascites. We have tried some herbal treatments like milk thistile, neem water, aloe vera juice but its too early to tell if that is helping in any way.

Since yesterday we have noticed a few things happening that doesn't look good. The edema in her legs and feet has gone down but we have noticed that her skin is becoming jaundiced again, her skin is extremely itchy and there are spider veins all over her legs and feet.

One dr we spoke with said the itchiness is a side effect from the morphine and the jaundice may be because the stent is becoming blocked.

We spoke with her original oncologist and he explained to us that it appears my grandmother's liver is failing. The only recommendation he had was to keep her comfortable at this point.

I didn't expect this to be happening so soon. I'm not clear on what this means...how long does a person have once their liver starts failing?

I have seen some posts about CAAT as an alternative treatment...would it be too late to try this since her liver isn't functioning properly?

Any help is much appreciated

Serena

Re: possible liver failure...

Dear Serena,
Try anything and everything you can, if it makes your grandmother feel better and makes YOU feel better.  BUt only if your grandmother wants it. The doctors don't know what's going on, I've found, and you're left to fend for yourself. We were told my mother's liver was failing after the swelling went down in her ankles, too - and they were right, though at the time she seemed to be doing so well that we didn't believe them (hospice told us that, and they were much more accurate than the doctors).  She died a week later. BUT that does NOT necessarily mean that is what is happening with your grandmother, so just keep plugging away at finding ways to help her, because you never know what will help. As long as she's comfortable and pain-free, I wouldn't drag her out to see doctors, but the herbal remedies sound soothing and are definitely worth exploring. The decline can be sudden, so you have to be prepared, but it may also be a false alarm. I don't know what CAAT is, but if it's an alternative treatment that can be done at home, I'd look into it.

I guess I'm stressing both sides of the story here because I don't want you to feel like you didn't do enough for your grandmother, and have that guilt on top of everything else. None of us knows what is going on with this disease - it takes so many different forms.  Just please keep in mind that anything you do will probably not change the outcome that much, and the most important thing is to be there for her and tell her you love her, whether she lives another week or another 10 years.

You're not alone in your confusion - it's horrible that we all wind up being doctors to our loved ones, looking ceaselessly for a cure, and we can't just be there for them as family members as much. Don't be too hard on yourself -- you're doing the best you can and you shouldn't be expected to know the answers when even the doctors don't agree.

Sorry this is sorta rambling - I wish you and your grandmother the best of luck.
- Joyce

Re: possible liver failure...

Thanks Joyce! I can always count on this site for support and encouragement, I'm glad I stumbled upon it.

Gran's condition hasn't improved this week...I guess that was to be expected. Her ascites and edema have gone down considerably with the 'water pill' (furosemide). Thats a good sign...but unfortunately along with that her weight has dropped 6lbs in the last week alone. She looks even more frail now without the bulging abdomen! She has also cut back on her food intake, she is still drinking plenty of fluids and peeing regularly, but her solid food has been practically cut in half. I don't think that is a good sign?!?!

Another concerning thing we noticed today was that she complained of pain in her upper right abdomen for the first time. The morphine the Dr. prescribed definitely helped but it was alarming because up until now, my gran has only complained of a tightening feeling in her abdomen, never pain...

And yet another concern...black and white spots on her tongue that were a little painful. I just noticed them today when my gran asked me to see what's on her tongue. There are very small and only a few but definitely something I was immediately concerned about. Anybody else experience this??

We have community health nurses that come by the house every couple days but they are starting to sound like broken records every time we mention a new symptom to them - "prepare yourselves, things are going downhill" or "that is a response to the body shutting itself down"

Maybe its just me, I can't accept that her body is shutting down especially since her mind is so active and alert! She was sitting up reading a paper today as if she didn't have a care in the world!!!!


- Confused