Liver Failure

[Waldorfmom]

Our 39 year old daughter is in the hospital with liver failure--cirrhosis, fatty liver, and sludge in her spleen.  She was admitted on 6/10/13.  For the first five days she was incoherent, then gradually she began to be able to communicate.  She still, eight days later, isn't sure what year it is or which hospital she is in.  She's been told her condition is grave, but we are not certain she understands.  They are trying to bring her liver function up to 10% of normal operability.  With that, we are told, she may be able to stay alive for the year it takes for her to get on the transplant list.  My question, if anyone out there might know, is since she has an identical twin sister who "says" she is willing to donate part of her liver, does the recipient still need to wait that year?  I've been trying to get to talk to the doctor, but she we live far away and they aren't good at communicating with anyone but my son-in-law, who isn't good with understanding and communicating medical facts.

[Dee1956]

I am so sorry to hear of your problems, living in Waldorf you are not far from Fairfax Hospital. )I would not use Southern MD, I would go to a larger hospita). They have an excellent liver institute and Dr Younnisi is one of the best.
I hope you can find help.
Dee

[pugdaddy]

As 'heart' stated above, you have received outstanding advice from several of this group's most knowledgeable and experienced people.  As each one has noted, your daughter needs to be evaluated by a hepatologist (liver specialist).  Liver disease is very complex, but in most instances there IS hope with proper evaluation and treatment.  Wishing you and your daughter the best -

[heart_in_the_keyes]

The info you received above is excellent.  Your daughter needs to be evaluated by a hepatologist.   As I am going through transplant list pre-tests I was surprised by the information I received.  Good Luck on your quest to help your daughter.  

[orphanedhawk]

Our dear expert, Hector has already replied but I will add my bit, as I've experienced some of the same problems as your daughter.

I had cirrhosis and ESLD, end stage liver disease, which at one time had me delirious in the ER where I didn't know the date or much of anything. It's a side effect of cirrhosis known as hepatic encephalopathy. Her doctor will prescribe medicine for the HE which will help.

I also had a live liver transplant with my daughter as my donor. No, you do not have to wait for a live liver transplant as you do when on the list. However, your daughter must be well enough to handle the surgery. Also, the donor and recipient must be a match. I'd assume twins would be perfect but I'm no medical expert.

The surgeon removed 66% of my daughter's liver and gave it to me. Within 3 months her liver had entirely regrown. She was back to work after 8 weeks.
This was a bit over 4 years ago and we are both doing very well.
At the time of my transplant, I was living on either 8 or 9% of my liver ( I can't remember which).

Not all transplant centers do live transplants. Ask around and ask about how many live liver transplants they've done and their donor mortality percentage and the percentage of donor complications. You are putting a healthy person at risk and you want a very experienced doctor and facility.

Wishing you the best of luck~
OH

[HectorSF]

Also you can ask your question to a doctor at The Mount Sinai Medical Center in NYC who is involved in treating transplant patients. He can be written to in the "Liver Transplant Expert Forum".

http://www.medhelp.org/forums/Liver-Transplant/show/274


Dr. Thomas D. Schiano, Professor of Liver Diseases for the the Department of Medicine.

Dr. Schiano has a clinical background in hepatology, gastroenterology and clinical nutrition. He has expertise in the management of persons with cirrhosis and other acute/chronic liver diseases, and in caring for patients prior to and after liver transplantation.


Good luck.
Hector

[copyman]

Hi Sorry your daughter and you are going through this. My prayers go out to your family.
She is very young to have cirrhosis.
Don't think you mentioned it but is your daughter a drug addict or alcoholic? T.P. centers will make addicts wait for 6 months to a year to make sure they are clean. I know it seems unfair but they dont want to waste a good donar liver if there is a chance person will go back abusing drugs or alcohol.

[HectorSF]

I am sorry to hear about your daughter's health crises. Unfortunately this does happen in patients with advanced liver disease and it needs to be properly managed to prevent future incidences. Becoming incoherent or going into a coma can be a life threatening situation and needs to be treated very seriously.

Your daughter needs to go to a transplant center in order for your questions to be answered. They will evaluate her current health and determine if and how soon she will need a liver transplant. Only a hepatologist (liver specialist who works on a daily basis with patients like your daughter) can help your daughter.

As they learn more about her condition they will help her to manage the complications from her liver disease and keep her as healthy as possible for as long as possible before she needs a liver transplant.

Hospitals that do not have liver transplant services can not be relied on for a proper diagnosis of your liver disease. At my transplant center it is not uncommon for patients to have been told that there is no hope and they should go to hospice. As shocking as this sounds it is not uncommon. Only a transplant center can evaluate advanced liver disease.
Whether her situation is grave or not we don't know. Some people with cirrhosis become hospitalized due to a complication of advanced cirrhosis called hepatic encephalopathy which is a totally reversible condition. "she was incoherent, then gradually she began to be able to communicate.  She still, eight days later, isn't sure what year it is or which hospital she is in."
Is what commonly happens when a patient has an episode of encephalopathy. This is because the liver is no longer able to filter toxins from the blood or is triggered by many causes such as dehydration, infection, internal bleeding, etc.

As far as a living donor transplant... Not all transplant centers perform living donor transplants. Secondly only 1/3 of willing donors are a match to donate a part of their liver to the recipient. Not all liver patients can receive part of a liver. Some need a whole liver.

I would highly recommend you talk to a liver transplant center located near her ASAP. If she continues to go to a local hospital they will continue to patch her up but will not treat the underlying condition, her liver. Only special hospitals can help someone like your daughter. Please act soon as liver disease only gets worse with time.

Here is a list of liver transplant centers according to what state she is in.
http://www.liversociety.org/html/liver_transplant_hosptials.html

I hope this help you and your daughter.
Best wishes to your entire family.

Hector

[ceanothus]

I'm so sorry to hear of this, but I'm glad you found our forum. You might want to also ask this on the Cirrhosis of the Liver Community at http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390. I can't answer your question but someone will come along soon who can. I do know that even with a live donor it will take some time for testing and preparations, and that your daughter will have to be at some specific level of health before they will do the surgery or the surgery itself would kill her. Even with a willing donor they will not perform the transplant unless there is a reasonable chance of success. The chances of success have to outweigh the risks to both the donor and the recipient.

Those of us who can't answer your question can at least offer our support, wishes, hopes and prayers. Is your daughter at a hospital that has its own highly successful liver transplant center? This is important and can make a big difference to her survival through this crisis. The hepatologists who are involved in transplants are far and away the best qualified to pull her back out if this crisis and to get her into better health for surgery.

[can-do-man]

I am sorry to hear daughter, we have a member here by the name orphanedhawk . She should be able to answer your questions as she also had a live liver TP........... Hoping for the best for your daughter.