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End Stage Liver Failure

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Posted 4/28/2017 11:45 AM (GMT 0)
confused

I did not see a Liver Failure Forum on here.
My mom had been diagnosed with cirrosis about 10 years
ago. Just these past 8 months or so, she has been showing
signs of End Stage Liver disease. She been admitted twice to
the hospital just in the past three months due to Hepatic Encephalophia (sp?). Docs have her on Lactulose.
My question is, where will it go from here? She does not see a liver specialist, only her Primary. I've asked him if she could have a referral to a specialist, but he denied her, because he said it wouldn't help help her. with her age, (79), and heart issues, and diabetes, there is nothing they can do to help her.
I would just like to know how much worse will she get. Just what to expect.
Posted 4/28/2017 9:22 PM (GMT 0)
Betilu, welcome to the forum. I am so very sorry to read about what you & your mom are facing. I will contact the moderator in this forum & see if she can give you some input here. This is not my forum, so I will see what I can do.

Take care.
Posted 4/28/2017 10:02 PM (GMT 0)
hi Betilu62 and welcome,
so sorry to hear your story. Cirrhosis of the liver should only be followed by a liver specialist. only liver specialists should deal with the complications that cirrhosis can cause. When your mom was in the hospital, what did the hospital doctors tell you. certain tests and procedures need to be done to avoid serious complications.

what kind of hepatitis does your mom have (viral, nash, alcoholic etc)? I have so many questions. can you tell me more about blood tests, biopsies, ct scans, ERCP, and other tests that can tell me your moms current condition. is HE(hepatic encephalopathy), the only symptom your mom has? I believe your mom should be evaluated by a GI dr, to give you a better idea of her stage of cirrhosis. im surprised the hospital drs didn't recommend a local GI.

ask your dr to prescribe a drug called Xifaxan for your mom. it is a antibiotic that works in the intestines, a long with lactulose. they neutralize ammonia, and move it thru your gi tract. the 2 together will give your mom MUCH better results.

please write back , many people here that have similar stories. your mom may not be able to be transplanted, but only a specialist can answer that. cant answer your question about,"will it get worse", without more info..
Posted 4/28/2017 11:46 PM (GMT 0)
Thanks so much for replying.
Mom has lived in Ohio all her life, but 7 months ago, the family felt like she she not be on her own due to health issues. So, I relocated her to my home in Florida. All her medical care was done in Ohio, and I don't have any of her records. I really don't know how they initially find out she had cirrhosis. She has terrible memory issues right now, so it's hard for her to clearly remember all the medical care she has had. She doesn't even remember how she was diagnosed with it. She has never been a drinker, so we know it's not alcohol related. When she moved here 7 months ago, I took her to see her new Primary Dr. He noticed how swollen her legs/ankles were, so he put her on two kinds of water pills. She was 191 lbs at that time, but is now 172. She is not jaundice, but does have a protruding belly.
She is always tired, sleeps a lot during the day, but restless and up during the night. My sister told me that last year she did see a specialist in Ohio and they told her they could do a biopsy, but that it was dangerous and even if they did do it, it wouldn't be worth the trouble due to her age and diabetes and heart issues. Mom's resting heart beat is usually106-110. Definite mood changes.
Posted 4/29/2017 1:24 AM (GMT 0)
Her age is a problem. She is not transplantable. Xifaxan can help her HE. Ask her dr about salt restriction, and diet.. a GI can give better advice, on keeping her comfortable.

So sorry about your situation. Let me know how things are going. My brother has esld/cancer. His last blood work was bad. He may not be transplantable. S

Best to you
Posted 4/29/2017 10:48 AM (GMT 0)
betilu62
I was diagnosed about 12 years ago with cryptogenic liver disease (unknown). ESLD stage 4 . I was on the transplant list for about three years, then taken off since I stablized. So I feel like c*** most of the time. The encephalopathy is really frustrating for me . I feel stupid and worthless. Right now I am taking 2 xifaxan a day. Not eating much meat ,mostly soy products. Lots of vegetables and fruit. The Dr.'s haven't ever suggested any diet, sort of came up with it myself.
Thank got I am not alone my husband is the greatest, he has a hard time understanding that I can forget something right after it's been said to me. I will continue to try and remember the good days as well as bad.
I am really surprised no one has suggested a gastroenterologist ,or a hepatalogist. A biopsy is not that dangerous if you have the right DR. My doctor was (poowee) he took out a lymph node, piece of colon, and something else. Then he told me he couldn't try again for several weeks. So we found a real Dr. who remove his sample very easily.
I am here to help if I can.
lavendar wink

Post Edited (lavendar) : 4/29/2017 4:52:15 AM (GMT-6)

Posted 4/29/2017 3:35 PM (GMT 0)
Thank you very much everyone. I'll post more, once I see changes in her, or hear from Dr.
Posted 5/14/2017 7:11 AM (GMT 0)
See if you can get power of attorney. If so, Get her medical records. Until this is done she has a uninformed advocate (you). Xifaxan is very expensive, she must get a prescription for it. That can be obtained by her current physician. Forest Pharmaceuticals has a program that will allow her to get the drug for free once her doctor fills out the paper work (prescription). Typically s ninety day supply shipped to your door @ 550mg dosage usually 2 times a day.

Ascites is what she is likely experiencing as far as swelling in the abdomen. It will need to be drained if my assumption is correct. A component of blood should be administered afterwards to renourish her depleted nutrients. The body goes into a self defense mode when it senses muscle tissue loss. Atrophy is what it appears to be. The body will seek healthy muscle tissue to subsidise its loss of nutrients. She will lose muscle tissue. That is where the blood component comes in. It restores the damage. The name of the component escapes me. It's been awhile since I was dealing with these issues.

Keep your head up. We are born to die. If it's her time she will pass, and no doctor or drug will stop it. The important thing is you preserve her memory and do whats needed to allow the opportunity for her to fight or go peacefully out of her suffering here.


Ziff
Posted 6/2/2017 9:12 AM (GMT 0)
So what next. Well I have had ESLD for about 11 years now , so I know what your mom is going through, encepalopathy put me in the hospital about 3 times in one year. Now it is just tests every 6 months. I will be flying to Scottsdale ,Arizona for more of the same tests on the 5th of june. I am only taking Lactulose and Xifaxan. They have never given a clear diagnoses , they say it is Cryptogenic liver disease (unknown). When I first got sick I was given 48 hours - 5 years. I am still not able to take anything for pain. Now my arthritis is really getting worse . so I hope your mom is not in pain for any other reason. She will not be able to even take tylenol because any kind of drug can cause damage. I am able to take extra Lactulose, when I feel my brain is fuzzy. I will be here to answer questions you may have. Because the encepalopathy sometimes gets the best of me .
lavender
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