End Stage Liver Disease - What should I look for...expect?

[StressedOutHubby]

Hello everyone.  Wife has end stage liver disease and has been asymptomatic since her diagnosis about 4 years ago.  Recently she's had a lot of swelling due to fluid in the abdomen and she's suffering from nausea, pain in the abdomen and has not had a bowel movement for days.  Doctors have put her on diuretics, recommended laxatives and enemas, but with little or no effect.  We can

[Kalio1]

Is she on an antidepressant? If not I would see about having her evaluated for one. Dealing with all of this is so stressful as you know for both of you and the depression and anxiety of it all can be overwelming. Maybe you both could use an antidepressant. I would stay very proactive in seeking out other options if she/you are feeling like not enough is being done where you are. Consulting with other facilities  and or being evaluated by their team might be helpful.
Best of luck to you.

[mikesimon]

You might be able to check with other centers in your area or outside of your area. I've known people to travel long distances for transplant and it's possible that another center might have fewer patients listed and might agree to list her with her current MELD score. Good luck. Mike

[StressedOutHubby]

My thanks to everyone from the heart.  I will get more information and encourage her to speak to the team.  Yes, she has been evaluated, her MELD is not high enough as yet to get on the local list.  Again, my deepest thanks.

[Kalio1]

I can understand her concerns about both dealing with ESLD and dealing with transplant but maybe she should consult with the transplant facility so she can better understand post transplant quality of life issues. People can live quite well post transplant. As with everything nothing is guaranteed but I think she would benefit by speaking to people tht have been through it as well as doctors who work with transplant patients.
Has she been evaluated for a transplant?
This must all be very hard on you both but try to keep hope alive and stay positive.

[mycoldfeet]

I think she has a convoluted idea of the quality of life post transplant. I have a friend that is post transplant and works offshore on an oil rig, he just has to take his pills to work with him. I think you need to do a little research on that. If you need help with that, transplant teams have counselers that can answer any questions.

[mikesimon]

Post transplant QOL isn't nearly as bad as your wife thinks it is. I was transplanted in 2000 and feel a million times better than I did pre-transplant. She should really get evaluated if she hasn't done so. I was home within 5 days of surgery - they started my surgery Friday evening and closed me up Saturday at 1:00 AM. I was home the following Wednesday at 2:30 Pm. I was at work in 11 days though it's only a desk job. Of course, if she is hep c postitve she'll probably need to deal with that post TP as it recurs universally. I would urge her to get some advice and information before she rules TP out. Mike

[StressedOutHubby]

Hi and thanks.  Her blood pressure is good, not bleeding as of yet, but spleen is enlarged.  She has said she did not want to go through a transplant due to her concerns over quality of life.  Going to a hospice now seems drastic and very scary for all concerned.

[mycoldfeet]

Is she a candidate for a liver transplant? If not, I agree with  contacting Hospice. There is a few symtoms that you did not mention, which is why I asked if they are considering transplant. Uncontrolled Blood pressure, esphogeal or intestinal varacies, dementia, spleen enlargement, all that you mentioned is consistant with ESLD, but not critical, as of yet.

[Lonestar823]

I'm so sorry.  
Contact your nearest Hospice.  They will answer all your questions and provide comfort, care and support for both of you.
Be strong.