Closest forum I can find to ask these terrible questions.

Has she visited a hepetologist? They would be able to tell what her MELD score is. Her diet needs to be as free of salt as possible and stay away from eating red meat. Let us know more about her situation so we may give any hints or advice.

Hello and welcome, All the members here are experienced patients and caregivers. We'll do our level best to help walk you through some of this. I myself am a alcoholic that developed End Stage Liver Disease (ESLD). We have a few others here that are caregivers to people with alcohol related liver disease also.

A few questions need to be answered to help us see where your actually at in treating the disease. Is your wife currently seeing a Hepatologist? A primary doctor or G.I will not in most cases be able to adequately treat her. In every case I have seen there appears to be a national standard of required sobriety to be eligible to receive a transplant. Six months of verified sobriety. Verified meaning documentation from AA or a substance abuse counselor. Nothing will be done until this goal is reached. At that point she will go on to the second leg of evaluation which is a couple days of medical testing to insure she will make it through the transplant surgery. Then you get listed.

I personally didn't think nor did my doctors that I would live to see the 6 months required sobriety. I was deemed terminally ill from the start. Liver was barely functioning and Kidney's had completely shut down. There was no bending of the rules even though I had a MELD of 28, Severe fluid retention, Encephalopathy and clinging to life. I had multiple complications with diuretics and eventually had TIPS done about 4 years ago. I have been stable now for for about 2 years with a MELD between 7-12 (It fluctuates). Kidneys recovered fully but liver is only at 15% capacity. I have to take Xifaxan and Lactulose to keep ammonia levels down and rid my body of toxins.

What kind of medications is she currently taking? How long ago has she stopped drinking? Has she been doing AA or Therapy? Have they done a biopsy on her to determine how much damage she has? Has she had a Paracentesis done or do they believe they can control the fluid issues via medications?

The chances of a living donor is almost non existent. The risk of putting someone under the knife is bad in her situation but most if not all hospitals refuse to cut into 2 people to save one. Her nutritional needs should have been addressed from the start. Usually there is a packet of information given when you visit a hepatologist that tells what she needs nutritionally. Low sodium diet is a must (No sodium is best). She needs to try nutritional drinks like Ensure to get the required amount of nutrients. Stay away from red meat, It's hard on digestion. Beans are a good source of protein also. Being hungry but not able to eat is normal. She must force herself to eat. The body will go into self preservation mode and start robbing her muscle tissue if this is not quickly addressed.

I believe this is enough for you to think about for the moment. I'm so sorry you guys are going through this. We'll do our best to help you both along the way.


Ziff

Whythisnow,

Welcome to the forum. Our members are very welcoming and have many years of collective experience fighting liver disease. As patients and as caregivers like yourself.

I am caregiver to a 63 year old partner of 33 years (he is male, I am female...though no one cares...it takes diversity of all kinds to make up a viable community). He has Hep C but also DX with Alcoholic Cirrhosis and Liver Cancer (Heptocellular Carcinoma-HCC).

He did 6 months of AA before he was listed, and rebounded a lot during his early sobriety. His edema was controlled finally by medications, he took the Lactulose and Xifaxan for Hepatic Encephalopathy, there were BP meds to control portal hypertension (that can cause bleeding varices in esophagus or stomach), etc etc.

He was transplanted in May 2011 and has done pretty well.

When he presented at the Hepatology department at our TP center, his MELD was 24. But they couldn't evaluate him though he was very ill with a 30% chance of making it 90 days...because he had not been sober 6 months of a document program. He had only been sober 1 month if the truth were told...and so it began...the waiting and praying and going to AA with a half alive person.

He made it.

You have come to the right place.

We are here for you.

Post her labs...we can help with that.

Hugs,

You really should make a list of the questions as you said you it's hit or miss as far as you seeing her doctors. Often the patient is too sick or sometimes a bit too confused to ask the important questions. Do you know for certain that she takes her meds properly? Vitamin D is often prescribed for folks in her shoes and ondansetron for nausea, if she has that. You don't mention lasix (furosemide) to help with fluid retention, another question for the doc.

Some of the questions have been talked about. Are you in an area where there is a transplant center? If you tell us whereabouts you live we can help you find the best center for transplants. It's great if you are already near one. We moved from Boston to Jax, FL for about 6 months for my brother's TP because there were so many more available in that area....livers that is. You had to have a MELD in the 30's to get one in the Boston area.

Don't lose hope, after reading a lot of posts you and your wife will see all the hurdles folks have overcome to get where they are today.

Myself, I would find someone right away, whether they have to come to the house or whatever, and start documenting her sobriety however many times a month required by the transplant center. Maybe Ziff can chime in on how many times a month documentation was required in his case.

Also important, keeping all her records at your fingertips, including past reports, labs etc. The transplant team will be asking for her medical records at some point.

Plan on finding a caregiver, this is a must if she is looking at a TP in the future. They want this caregiver to be ready to roll when the call comes, and must attend a few classes and many doctor appointments during the transplant eval stage as well as after TP.

Get that appointment with hepatologist ASAP, waiting to see her primary doc to ask why she hasn't seen the liver team is wasting precious time, you just never know what will happen in just a few days. You really have to be on top of things, and it's very time-consuming. We called the Mayo Clinic in Jax on our own to get the ball rolling for my brother.

Hope she has good insurance, makes it a lot easier.

WTN, You have to be more assertive. In most if not all alcoholic cirrhosis cases doctors of any form are reluctant to treat the disease. Alcoholics/addicts don't have good track records of keeping their word, They tend to slip back into the old comfortable groove the minute the storm clouds break. Doctors are very much aware of this and they wont waste their time or energy unless the alcoholic/addict shows signs of a desire to be clean. They aren't gonna give a liver to someone who'll just piss it away. In my opinion (biased) we alcoholics have to be some of the toughest characters in this disease. Her feet will be held to the fire to test her desire to live. It's easy to lose hope and quit. I almost did myself. It felt like getting gut punched in a already swollen belly every time I had to here scolding tones or dismissive speak from doctors.

I understand you are currently the sole bread winner in the family, It's tough to be in that position. You have to seek help to take care of her maybe a friend or family. Records need to be kept of all her appointments and that is something you can do after work. My wife did. If she qualifies for disability she needs to get that ball rolling immediately. That will help with the loss of income. Being a caregiver is often harder than it is to be the patient. Long stressful hours of worry and the agony of watching someone you love nearly die. Not a job for the faint of heart. We have tons of caregiver members who can relate and share how they coped through the really bad times. Again your gonna have to be strong and assertive, Don't ask demand you get answers. If they detect a lack of concern on your part they wont care either.

Sobriety, I can guarantee that your wife was in no better shape than me when I went through the required 6 months. I actually went 9 months. I missed 2 therapy sessions in 3 months and had to start over again. Not that it mattered but the reason I missed the appointments was due to me being in outpatient in hospital for paracentesis (Draining stomach) on both occasions. I was frail and looked like a pregnant skeleton but I did what I had to do. Wheelchair, piggyback or crawling they weren't going to deny me a chance to beat this.

Your wife is fortunate like myself to have someone who supports her and see's to her needs. A few members here have fought this battle alone and won. Can't or I don't know are not a part of our vocabularies. There are programs where AA will send a member to your home, You'll have to find a chapter and research. Therapy (shrink) is a alternative to that. It cost a lot of money though. Documentation consist of the AA member in charge of the meeting to sign off on a piece of paper that she went on that day. Therapist provide records directly to the transplant department.

The medications will have to be adjusted many times before the fluid retention issues go away. A important note about diuretics, They have a tendency to be very rough on the kidneys but not much you can do about it. When they drain her (Paracentesis) she needs to be receiving albumen afterwards. Albumen replaces the nutrients in the body that got drained away with the toxic fluids. I was having 8-12 liters of fluid each session two times a week removed before the transplant team decided I needed TIPS done. Since then I havent had any fluid issues but the surgery is inherently risky and is only to be done if diuretics aren't working. It took a year before they realized the diuretics had no effect. I lived in hospital outpatient and a therapist office with short reprieves at home. Make sure she is having at least 3 bowel movements a day. It's the only way she'll get rid of the ammonia. If she isn't using the bathroom she needs more lactulose, You can't overdose on it.

If she feels she can handle the pain without the meds then by all means let her leave them alone. Sleep disorders are the norm with liver disease so she may have to take something for rest. Best of luck to you and hope she is willing to fight her way outta this. It won't be easy.



Ziff

Try health drinks, Like Ensure. There are a variety of flavors and so many different products like it, She's bound to find one she likes. The salt issue or lack there of is one reason I had a difficult time with eating. Nothing tasted good. Another thing was psychological I'm sure but I was terrified that what ever I ate contributed to more fluid issues. Feeling hungry only to take a bite of food and feel nauseated. Eventually she will either have to drink a meal or have it done by a I.V drip. She may give up, That's not uncommon. Depression sets in and the bleak outlook of what ever you see as a life haunts you like a dark cloud. Maybe she needs to be taking something for depression. She can recover from this but it has to be all her decision.


Ziff

I'm not sure what your asking me about "Going through this". I assume you mean having other issues prior to my diagnosis of ESLD. I was a heavy drinker up to a liter a day and some beers, fiance never knew the volume of alcohol I was consuming. I had experienced shakes but more alcohol usually stopped that problem. My wife (back then fiance) new I drank alot but to this day she'll tell you she never seen me drunk. I guess drunk is slobbering falling down drunk to her. I held my liquor pretty well. I knew something was wrong days before hand. I couldn't take a drink and not throw up, But me being me I still forced it down. Girlfriend didn't know about this new revelation and I didn't think it was anything to be concerned with.

I hid the amount of alcohol I was drinking from her. We lived in separate houses at that time and my finances where just that, mine. Had she known the amount of booze I bought weekly she would have been floored. I might not be married today. She found out everything about 7 months prior to our wedding. One day walking around just fine the next unable to walk or hardly communicate. She carried me to her physician for testing and the next day we received a call with the lab reports. GO TO E.R NOW!!!! They were baffled that I was alive. Kidney Failure and Hep.C was the initial findings. The Hep.C was a rush call to judgement as later I found out it was just severe Cirrhosis (ESLD). I was in two different hospitals over the course of the next month clinging to life. I was eventually released and told I wouldn't live beyond 3 months at best and take care of my financial and end of life plans.

My wife still married me knowing she could have walked away. I begged her to leave and ran her off at first but she kept coming back unwilling to let me die. We had been together for 4 years prior to our marriage. Together we'll beat this. She poured all my liquor down the drain along with all my shot glasses I collected over the years. Pissed me off but that was the stipulation if she was to stay with me. You have to get transparency in your relationship. Be that medical or otherwise. Now may not seem like a good time for a talk but honestly I don't believe there will ever be one when situations like this arise. Get those records and you'll know for sure. Then you'll know how to tackle this together. You have to work as a team, everything on the table.

Ziff

Make sure her records are released to you, I believe that is medical proxy. It may cost you a few bucks but it will certainly clear everything up. I/we have a filing cabinet in my office where I have kept every scrap of paper that hospitals have provided. It's inevitable that paper will get lost between doctors and staff, I've had to provide my own records several times to clear up discrepancies. It is a must that you do the same. You should have seen my Hepatologist face when we walked into the room with giant folders. He had never seen such detail in record keeping from a patient.

Her MELD will fluctuate more than likely. It's important that you keep in mind that you can be very sick and have a MELD score that is low. David, another member here who has received a transplant says he was walking around no differently than any other day when he got the call. MELD can also be effected by other issues like cancer. They take each situation differently and adjust the MELD to fit. Cancer is common amongst people with severely damaged livers, they keep a close eye on any new nodules and look for growth. Liver Cancer can actually be a good thing in increasing a MELD score.

Pain killers were prescribed to me also. Oxycontin in particular along with anti depressants. I believe they did that mainly to bring me down from the alcohol without such bad withdrawals. I was weened slowly off of them eventually. Don't know why they are giving her that specific med but usually when a hospital has deemed you near death they wont you to go as peacefully as possible. A problem you could be facing is that they have given up on treatment. If she's been there before and been warned, They may see this as just another lost cause. You can only cry wolf so many times before the villagers stop coming to see if your ok. If she is truly committed to fight this time she will have to work twice as hard to prove herself. Don't dwell on the past, Learn from mistakes and move on. You can't change the past but you surely can change the future.

The palliative care questions are best answered by the caretakers here, They know alot about that subject. Sorry, I understand your frustration about not being able to make this better. Truth is you can't, All the hard work you do to keep her alive is gonna be for naught if she herself isn't committed equally to survive. Your doing the best you can and seem to be willing to go the distance for her and with her. Dig in your heels and start getting prepared for a bumpy ride.


Ziff

The MELD, although it fluctuates, can sometimes show a trend up or down. All we need is 3 results from her blood labs, the INR, the bilirubin, and the creatinine. The INR measures your clotting factor, bili measures liver disease, and creatinine measures kidney function.

Here is the calculator link:

Meld Calculator


Mae

Post Edited (Mae be here) : 1/27/2014 12:09:53 PM (GMT-7)

That's good news WTN. Are you saying they are waving the sobriety requirements? As long as she sticks to the plan she's currently in I believe she will be fine. I agree that there will be times when things get difficult along the way but the fact she is living cleaner will improve her life dramatically. Hopefully your relationship will grow even stronger with each passing day. Good job!!! Both of you.


Ziff

Sorry to hear about that, Mama. It never gets easier, does it? I love those ideas, she has already been keeping charts and has everything we have gotten so far in a folder (I found a Hello Kitty notebook, lol.) I have SO much to do and so little time to do so, at least my work day ends at 3 or so. That has given me some precious time to do some running about to things financial and whatnot. We have such a great network, several people who have had many health issues and one of those persons is not working at the moment so she (the friend) can accompany my wife to the docs when I cannot.

I feel a lot more hope after that appointment, and I know my wife does too. She was (is still, but not to the degree) terrified that she was just going to have to resign herself to young death. I know many backslide, but even her docs see how she actually has woken up. She has seen the light, and that is 'do I want to live, or not?'

Yes, the sobriety requirements I see are being waved, the doc can tell she is clean and not smoking (tobacco, the other stuff is legal here :) and most, like 98% of the docs here are very happy about it! But even so, she is not smoking anyways!)

Her sobriety and no smoking date is officially set to before thanksgiving, and she is top of the list to get a transplant.

We just have to get through till then. As soon as I get her records I can get some numbers that might help get and idea of where we are sitting. She is going to have to go get a tap done again, the pressure is rather high and the doc was telling her they could do Lasix (sp?) or another tap and going through stuff and she looked at them and went 'TAP, lets do that, easy, just please skip the lidocaine. I prefer to only be stuck once.'

Yeah, she is pretty tough. I am sure there will be blood draws then so I will wait to see how those turn out before asking advice on numbers and whatnot.

Hope you all are doing well, or at least like us, as well as can be.

Mae, As much as things are being hacked today I'd be concerned my records would easily get into the wrong hands or completely lost. All medical records files at my wife's office have already been transferred to comply with the new laws. On days that she looses access to the net the office is useless. Granted this is a small doctors office in a rural location but this has happened repeatedly. Going digital on everything is not always best.



Ziff