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Decompensated liver: treatment options?
Hi, I am here on behalf of my mom who has cirrhosis.
She is 68. Quit drinking & smoking several years ago. Hepatic encephalopathy was controlled with rifaximin & lactulose until she suffered a stroke Oct 13, 2013. Now her liver is decompensated & She is getting beat up by the HE.
Doctors say there is nothing more to be done. "Put her in an institution."
She is now on warfarin as well as other meds. Probably too frail & old for a transplant now, even overseas w/a living donor-- aka me.
I can't understand why the liver decompensated?
Her stools are clay colored. Wouldn't phos choline help with that?
She has developed a lazy gut since the stroke, so she is backed up, which probably makes the HE worse.
I am thinking colonics & Enterosgel might help w/ that. What do y'all think?
No sign of jaundice or ascites yet, but some breathlessness & fatigue & her mental faculties are deteriorating sharply.
There have got to be some other options?.
TIA
She is 68. Quit drinking & smoking several years ago. Hepatic encephalopathy was controlled with rifaximin & lactulose until she suffered a stroke Oct 13, 2013. Now her liver is decompensated & She is getting beat up by the HE.
Doctors say there is nothing more to be done. "Put her in an institution."
She is now on warfarin as well as other meds. Probably too frail & old for a transplant now, even overseas w/a living donor-- aka me.
I can't understand why the liver decompensated?
Her stools are clay colored. Wouldn't phos choline help with that?
She has developed a lazy gut since the stroke, so she is backed up, which probably makes the HE worse.
I am thinking colonics & Enterosgel might help w/ that. What do y'all think?
No sign of jaundice or ascites yet, but some breathlessness & fatigue & her mental faculties are deteriorating sharply.
There have got to be some other options?.
TIA
I'm sorry that I missed seeing or forgot seeing your mom's age in your original post.
I don't know the eligibility criteria for liver transplant in the UK, and it varies slightly from center to center here in the US. If your mom were in good health otherwise, 68 might not be too elderly for a transplant, but her general health isn't good, and she has had a stroke. Those could be risk factors that a transplant center might consider to be too high. But as Nan said, I would ask for a second opinion.
I would be careful about adding any supplements or changing her diet without the advice of her hepatologist, but a liver friendly diet is generally low sodium, no iron, no/limited red meat, fresh fruits and vegetables, preferably organic, and no herbs, supplements, or medications without the approval of her hepatologist.
Yes, constipation can make HE symptoms worse, so her hepatologist should be monitoring her medications to prevent constipation.
Again, I apologize that I didn't read or remember your mom's age when I answered.
Advocate1955
I don't know the eligibility criteria for liver transplant in the UK, and it varies slightly from center to center here in the US. If your mom were in good health otherwise, 68 might not be too elderly for a transplant, but her general health isn't good, and she has had a stroke. Those could be risk factors that a transplant center might consider to be too high. But as Nan said, I would ask for a second opinion.
I would be careful about adding any supplements or changing her diet without the advice of her hepatologist, but a liver friendly diet is generally low sodium, no iron, no/limited red meat, fresh fruits and vegetables, preferably organic, and no herbs, supplements, or medications without the approval of her hepatologist.
Yes, constipation can make HE symptoms worse, so her hepatologist should be monitoring her medications to prevent constipation.
Again, I apologize that I didn't read or remember your mom's age when I answered.
Advocate1955
re: HE
My husband just got out of the hospital. He has been suffering from serious HE episodes on and off over the last six weeks since he started treatment for Hep C. He too takes lactulose and Rifaximin daily (550 mg 2x daily).
He finally got 104 fever and ended up in the ER. He was diagnosed with a UTI. He was on IV antibiotics and fluids for a week. He is much better.
The point is your Mom can easily pick up an infection and get dehydrated which only makes the HE worse. Be on the lookout for this.
My husband just got out of the hospital. He has been suffering from serious HE episodes on and off over the last six weeks since he started treatment for Hep C. He too takes lactulose and Rifaximin daily (550 mg 2x daily).
He finally got 104 fever and ended up in the ER. He was diagnosed with a UTI. He was on IV antibiotics and fluids for a week. He is much better.
The point is your Mom can easily pick up an infection and get dehydrated which only makes the HE worse. Be on the lookout for this.
No, I don't think 68 is too old for a transplant. My husband had his transplant at age 66. It all depends on the overall state of her health.
From what you have described, the stroke was quite serious, significantly affecting the left side of her body. As we are not doctors and don't know her full medical history, we are really in no position to advise you as to whether she is a candidate for transplant.
When I am thinking of how to offer advice, I always put myself in the person's shoes and think about what I would do. In your particular case, I would want to get a second independent opinion from another experienced hepatologist who has worked with patients who have complicated medical histories such as your mothers'.
I can only imagine how difficult this is for you. You have my best wishes for you both.
Nan
From what you have described, the stroke was quite serious, significantly affecting the left side of her body. As we are not doctors and don't know her full medical history, we are really in no position to advise you as to whether she is a candidate for transplant.
When I am thinking of how to offer advice, I always put myself in the person's shoes and think about what I would do. In your particular case, I would want to get a second independent opinion from another experienced hepatologist who has worked with patients who have complicated medical histories such as your mothers'.
I can only imagine how difficult this is for you. You have my best wishes for you both.
Nan
Cont'd: she is bed bound & constipated which I assume is making the HE worse.
She is on lactulose 30 ml x3 a day, plus ypthe occasional enema, but constipation is common in stroke victims.
We are going to try the usual remedies: prunes, cod liver oil, chia seeds, probiotics to see if that might help.
Any advice on a liver friendly diet? Low iron , low in red meat?
@advocate 1955: yes her liver took a beating from years of drinking, but why would a stroke cause it to decompensate?
TIA
She is on lactulose 30 ml x3 a day, plus ypthe occasional enema, but constipation is common in stroke victims.
We are going to try the usual remedies: prunes, cod liver oil, chia seeds, probiotics to see if that might help.
Any advice on a liver friendly diet? Low iron , low in red meat?
@advocate 1955: yes her liver took a beating from years of drinking, but why would a stroke cause it to decompensate?
TIA
As Mike said, she is 68.
She had been under the care of an excellent hepatologist here in London in the UK. He saw her after the stroke, gave her his usual antibiotic protocol, but it didn't stop the HE.
He seems to have given up on her.
I believe she is not eligible for a transplant because of age, co morbidities. We were told this long before the stroke.
I can't imagine the doctors haven't ruled out those viruses. She has been in &out of hospital since the stroke back in October of 2013.
Evidently you guys don't think 68 is too old for a transplant?
She is very frail now. Lost the use of her left arm. Limited mobility in left leg.
She had been under the care of an excellent hepatologist here in London in the UK. He saw her after the stroke, gave her his usual antibiotic protocol, but it didn't stop the HE.
He seems to have given up on her.
I believe she is not eligible for a transplant because of age, co morbidities. We were told this long before the stroke.
I can't imagine the doctors haven't ruled out those viruses. She has been in &out of hospital since the stroke back in October of 2013.
Evidently you guys don't think 68 is too old for a transplant?
She is very frail now. Lost the use of her left arm. Limited mobility in left leg.
Either her liver decompensated because of the amount of damage that had already taken place before she quit drinking OR her liver decompensated because something else continues to damage her liver. Has she been vaccinated against Hep A and Hep B? Is it possible that she may have Hep C or HIV? She should be tested for both of those and vaccinated for Hep A and Hep B. Other possible causes of liver disease should be explored and ruled out as well. Does she have regular screens for liver cancer?
As Nan said, if she isn't seeing a hepatologist in a transplant center, that's the next step. A transplant hepatologist would screen for all other liver problems that could be continuing to attack her liver, get her on a liver friendly diet, and monitor her closely for signs of further decompensation. How old is your mom?
Advocate1955
As Nan said, if she isn't seeing a hepatologist in a transplant center, that's the next step. A transplant hepatologist would screen for all other liver problems that could be continuing to attack her liver, get her on a liver friendly diet, and monitor her closely for signs of further decompensation. How old is your mom?
Advocate1955
I am so sorry to hear about your mother's medical condition. I know how debilitating HE can be and recovering from a stroke can only make things
much worse.
I am shocked that a member of the medical profession would tell you to "put her in an institution".
Is she being seen by a hepatologist? Has she been evaluated for transplant?
I personally know someone who had a stroke and recently had a kidney transplant.
If she has not been seen by a hepatologist in a transplant center, if it were me, that's what I would do.
I wish you and your mother the best going forward.
Nan
much worse.
I am shocked that a member of the medical profession would tell you to "put her in an institution".
Is she being seen by a hepatologist? Has she been evaluated for transplant?
I personally know someone who had a stroke and recently had a kidney transplant.
If she has not been seen by a hepatologist in a transplant center, if it were me, that's what I would do.
I wish you and your mother the best going forward.
Nan
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