End Stage Liver Failure from Hepatitis C

[rhearomanmahmood]

My mom has been in the hospital for 4 weeks now. We were told 2 weeks ago she has Hep C and she has end stage liver failure. She had to have a chest tube put in 2 weeks ago and she si doing dialysis, she had to do it Monday-Friday this past week. She asked for a break for this weekend it is making her really weak and she has not eaten since last Sunday. She is also in Kidney failure with a creatinine level of 5.6. They are doing dialysis to pull fluid off her body they had to stop it yesterday cause her blood pressure dropped really low. When she went into dialysis it was 77/33 was scared to know how low it went during dialysis. They have told her she is not a canidate for a liver transplant and they want to do a TIPS procedure on her liver. Has anyone done this is it worth the risk I am afraid of her doing it she already did a DNR and a DNI and just don't want to chance something that will only by a few months and have her more confused then she is now.

[HectorSF]

I am very sorry to hear of your mother’s suffering from end-stage liver disease and its terrible complications. I can understand your concerns. It all must be overwhelming and terribly difficult to know how you can best help your mother.

Just so I can understand the situation…I assume that your mother is suffering with pleural effusion which is why they put in a chest drain to drain off fluid around her lungs? I assume she also has ascites as well? The two commonly go together.

I can understand your concern about the TIPs causing more hepatic encephalopathy. But that should be able to be managed over time. I think the main concern of the doctors at this point is the need to stabilize her condition can be stabled and her life can be extended for as long as possible with no option for transplantation. The TIPS procedure could improve her fluid retention and if she is experiencing hepatorenal syndrome (HRS) (the development of renal failure in patients with advanced liver disease) it could help her kidney function as well.

You should really talk to her doctors to understand her current situation and about the risk vs benefit of having the TIPS procedure. While there is risk with any procedure, you should understand that to do nothing is also a choice which also can have serious consequences. Each patient’s situation is different and needs to be address on an individual basis. So not knowing the facts I can’t tell you what to do, but in my opinion, from my own and many of my friends experiences, I would do whatever can be done that just might stabilize your mothers situation. While there is life there is hope. Needless to say her current status is very precarious.

Many of my friends needed the have TIPS procedures when they became end-stage. It helped to stabilize them long enough to survive until they were able to get there liver transplants. I understand this is not an option for your mother but my point is that I have seen TIPS keep people alive for longer times then would have been possible without it. TIPS is a standard, common procedure done at liver transplant centers so you need not worry that it is some unusual procedure.

All I can tell you from my own liver disease and liver cancer experience is that when I was told I was probably going to die I held on to life as best I could every day and I took whatever option I still had that might allow me to survive another day. I was very lucky, somehow I was able to get a transplant after being remove from the waiting list because my cancer got so out of control and I am alive today. I don’t mean to day that everyone will survive and those that don’t make it weren’t tough enough. That is nonsense. Just because someone is terminal doesn’t mean they did something wrong. We are all gonna die one day. We just try to put it off for as long as we can.

When it is our time we have to face it as best we can and make the best of a bad situation. I just don’t want you to give up hope for your mom before you need to. Talk to and work with the doctors. Find someone who hears you and you feel comfortable with. Ask for the truth about your mother’s situation. The doctors see a lot of death so they should be able to tell you how you can best meet your mother’s needs under the circumstances even if her disease is fatal. We can all at minimum have some say in how we choose to die if that is our only option.

I wish you and your mom all my best.
Let me know if there is any way I can help.
Hector

[dontworry_behappy1]

Here is a link to the Cirrhosis of the Liver forum

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

Here is the link to HectorSF where you can leave him a personal message.

http://www.medhelp.org/personal_pages/user/446474

Hope this is helpful

[dontworry_behappy1]

Post on the "cirrhosis of the Liver" forum.  "HectorSF" knows about TIPS.
He is extremely knowledgeable.  You can also send him a person message.
I'm sorry about your Mom.  I know it must be really hard for you.  But your best bet is HectorSF.   He can answer your question.

Best to you