Need Help With Expectations

Hi

My wife has been a heavy drinker for decades and her ankles started swelling last year and then last week her belly swelled up to an enormous size. I took her to the hospital and they drew 1.3 L of fluid from her and they released her the next day. She is in so much pain it is unbearable. I took her to her PCP who recommended we look into Hospice or Home Health Care. We also went to a Gastroenterologist. We just had an Ultrasound done and are awaiting the results. We've been told that she has ESLD from heavy drinking. One Dr. told her she has 6 months to 5 years. One Dr recommended Hospice or HHC, one nurse said "you're not fatal", and another nurse tell us that from her experience based on the size of her belly and ankles and the yellow in her eyes, she most likely has 6-12 months.

Some hours she seems okay relatively speaking and she is quite lucid. But sometimes she can barely walk and has a lot of trouble getting up from a lying position. Does anyone have any insight as to what to expect? My biggest heartache is seeing her suffer as she can't sleep more than a couple of hours at a time. And it is sooo difficult to get her in and out of the car to her Dr appts. And I know she needs pain relief in the worst way, but she seems too lucid to go into Hospice. Thoughts? Advice? Thank you and God Bless.

Matthew, Sorry to hear your wife is so ill. I am a non practicing alcoholic that has been through the wringer with ESLD due to alcohol. The time frame they have given you/her is a standard with alcoholics. She needs to see a Hepatologist. I fore warn you the path wont be easy but there is hope. Documented sobriety will be the first challenge (AA or addiction therapy by a shrink). Second will be staying on top of her meds, Which will likely be diuretics, Lactulose, Low sodium diet, Xifaxan and possibly Sertraline. Third will be a thorough examination, I refer to it as the flip you inside out treatment. They will look at her for possible signs of trouble outside of her liver disease. Any issues found will be addressed prior to her being listed. Listed meaning ready for transplant if needed. MELD scores determine her necessity for transplant (A combination of several blood work components).

When she is being "drained", I would think or hope this was done by a Radiologist and a physician. The radiologist uses sonogram imaging to find the pockets of fluid and the physician administers the placement of the needle and catheter once the pockets of fluid are found. There is a synthesized version of nutrients that also should be administered (can't recall name) once she has finished the drain, I don't know that this will be needed with the low volume of fluid she has. I personally reached a high point of roughly 13 liters. I had to be drained twice a week prior to getting a T.I.P.S. Hernia's are common should she reach the point where I was. That may not be the case hopefully. I would strongly encourage you to copy and paste my suggestions in a search engine and educate yourself as much as possible.

My kidneys shut down along with a severely damaged liver. I was given the 3 month (get your crap in order) time limit when I left the hospital after slightly over month in ICU. I was in a coma for about a week shortly after I was first admitted. I am 7 years drug/alcohol free now and my MELD fluctuates between 8-10 (Nowhere near the transplant limit of 23 for our area. I was 28 MELD when I was sent to the E.R by a physician at the onset of my battle with ESLD.

Pain is part of the healing process. I wont lie, It was horrible. Yes they allowed me pain meds but very low dosages. Sympathy for people like me and her is only given when we prove ourselves worthy. We/I destroyed my liver and there is a price to be paid. You my friend, May be one of the lucky caregivers. Maybe she will be spared this hell. Your patience, Your love, Your everything will be tested while she attempts recovery. Be as supportive as you can. Try not to get burned out and remember you need to stay mentally and physically healthy.

My Best,
Ziff

Thank you guys very much for your insight. Emma, to answer your questions, she will be 52 on Sept. 1. And to my knowledge she has not drank since going to the hospital. She can't drive and we have taken all alcohol out of the house. And she says that other than a few fleeting moments, she has not craved alcohol. Hard to believe from a person that drank as much as she did. I've been with her 16 years and she always drank a lot. But she seems to be okay on that front. It is the non-stop pain in her belly and back and the immobility in her legs and ankles that are unbearable.

I do realize that taking care of myself is very important, so I am eating very clean and exercising every day and playing golf once or twice a week. Otherwise, I'd go nuts. It is so hard to watch her suffer and to take care of her while making sure she has the best care possible, while oh yea, working too. And she doesn't want me to tell folks what is going on, though I have told most family. It is friends that still don't know.

And to the theme of good hours and bad hours. We had her ultrasound yesterday and she had me take her to Olive Garden, and she ate pretty well. But follow that up with a night where she wakes up crying in pain saying she doesn't know how much longer she can take this.

One day at a time, I guess. Thank you again for all of your insights.

Thank you Ziff, yes it has been a challenge to find low-sodium stuff that she'll eat.

I hope Emma starts feeling better soon.
Hang in there, Matt.