Need Help With Expectations

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Matthew Bergen
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/19/2016 2:48 PM (GMT -7)   
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.

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1773
   Posted 7/19/2016 9:57 PM (GMT -7)   
Hi Matthew,

Welcome to Healing Well. I am sorry that your wife is ill. But I am glad that you have found us. You will find that this forum (patients and caregivers) of all types of liver disease is a group of very caring people. We are not doctors, but patients and caregivers sharing experience.

My husband was dx with cirrhosis due to alcohol is the fall of 2010. He did not have the swelling ankles and belly that your wife is having. He did suffer from jaundice in skin and eyes, frequent bloody noses that would take forever to stop, daily gagging, sleep disturbances (getting up for hours in the middle of the night) and also from extreme fatigue at unusual times.

His first visit to the GI doc he was told that the best thing he could do for his health is to STOP DRINKING. He went through a detox at home, barely getting out of bed. He needed help feeding himself, getting dressed, getting in and out of bed. He was very yellow. He lost a lot of weight. He went through a program in the chemical dependency unit at our health care provider. He did well, and his labs improved, slow going, but improvements each time. His bloody noses stopped, his gagging stopped. He slipped and was kicked out his program nine months in. Over these 5 years and 9 months he has overall done well. His labs have improved to the point that with exception of platelets, all the labs are back in normal range. A miracle. It has not been easy. He is not perfect. He had a major relapse in 2013. His numbers started to get bad. He started gagging again and was fatigued again. It took him about a year to get himself back together. He has been going to AA. Not enough in my opinion. But he is hanging in there.

There is a member here, A.Ziffle, look up his posts in the search box. He was near death, due to liver disease from alcoholism. He was given three months to live. He stopped drinking and has regained his life. He suffered from the swelling as your wife does and had a TIPS procedure to help with that. Hopefully he will see your post and reply to you.

I guess what I am trying to say to you is that there is hope. The best your wife can do is to stop drinking. Follow your doctors orders. If a liver transplant is needed, she will need six months of documented sobriety before she can be listed. MamaLama, one of our moderators, her husband had a transplant after going through the documentation.

Please post. Ask questions, tell us more about your wife. How old is she? Is she still drinking?

It is also important to take care of yourself. Being a caretaker is hard.

Hugs,
Emma

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 7/19/2016 10:15 PM (GMT -7)   
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

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 7/19/2016 10:25 PM (GMT -7)   
Hello Emma, Hope all is well with you and Dougie. Something told me to check the forum before bed. I been doing fine myself.


See ya,
Ziff

Matthew Bergen
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/20/2016 5:52 AM (GMT -7)   
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.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 7/20/2016 6:28 PM (GMT -7)   
Matthew, A word of advice on the eating out. She shouldn't. Low sodium or no sodium diet is the best defense against fluid retention. Not many if any restaurants have sodium restrictions. To get a idea of the amount of sodium intake she may have is about the amount of a pencil eraser a day, Sparingly. You need to start looking into the labels of all your food in the house. You'd be surprised to find everything has salt in it if it's not fresh vegetables. You'll have to search your grocery food labels carefully and remember LOW sodium on the front of the container is rarely true. Read the labels and compare. It will spare her from leg swelling potentially. I had a hard time coping with the lack of salt in my diet for about a year. It was worse than any craving I had for alcohol.

Ziff

Matthew Bergen
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/21/2016 9:12 AM (GMT -7)   
Thank you Ziff, yes it has been a challenge to find low-sodium stuff that she'll eat.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 7/21/2016 6:12 PM (GMT -7)   
Try salt substitutes. I personally found one that I like, It's called Cavenders Greek Seasoning and has zero sodium. I tried everything I could find, Mrs. Dash and a boatload of others. Taste is different for everyone so be prepared to experiment.

Ziff

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/23/2016 11:45 AM (GMT -7)   
I hope Emma starts feeling better soon.
Hang in there, Matt.
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