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Posted 2/23/2015 5:04 PM (GMT 0)
Hi I am new to this so please bear with
My step-pa has(alcohol cirrhosis) liver disease and his kidneys are failing he has oesophagus varices
He had the ascites drained 4 days ago when to took 10.7 litres of fluid he has started bloating again since yesterday and his tummy literally seems to be growing right in front of me. How many times can he be drained
I must say I realise his life expectancy is not good but he really believes he’s going to get better.
Please any advice or information would be good
Thank you in advance 
Posted 2/23/2015 5:40 PM (GMT 0)
Hi Tish,
Welcome to the Hep forum. I am sorry to hear your family struggles with a loved one's liver disease. We are those with liver disease of all sorts, and those who love and support them. My husband had Hep C and that damaged his liver over many decades. He is on the transplant list.

Can you tell us a bit of your step-Dad's history with liver disease? How long he has been ill and how long he has lived with liver disease? There are many here who understand ALD and have seen the same problems you now are facing. I know they will be along shortly to share their stories and experience.

You did not say if your step-Dad has quit drinking alcohol, but that is the first thing he would want to do in order to get the best health possible. Is he seeing a hepatologist at a transplant hospital, and is he eligible for a liver transplant list? In the US, patients awaiting transplant need 6 months sobriety to be eligible for transplant. Again, welcome. Big Hugs
Posted 2/23/2015 7:25 PM (GMT 0)
Tish,

Welcome to the HW forum. I am sorry you had to find us, but here we are.

My partner of many years suffered from both Alcoholic Liver Disease AND Hepatitis C. Along the way he also had a tumor (Heptocellular Carcinoma - HCC)...we had a joke at our house....The Hat Trick of Liver Diseases.

The good times ended in 2010 when he was too sick to go on and finally realized he would die if he continued to drink. The Hep C had been bubbling along since he was a kid and he sort of didn't think that much about it once he failed treatment in 2003. It just was there. I am certain it was the booze that got his liver. Cirrhosis diagnosis in 2003....and he continue to drink until 2010. GASP.

In the fall of that year he was peeing brown, unable to eat, itched all over, retained fluid, had the varices and was addled by Heptatic Encephalopathy. He was a sick, MEAN dude. His hepatologist told him to put his affairs in order and that he had maybe 3 months to live.

But there was an IF...If he sobered up, if he went to a program (counseling or AA), if he lived 6 months,he MIGHT qualify for a liver transplant. I have never seen someone go cold turkey as sick as he was and keep to it.

He is sober 4 and half years and almost 4 years post liver transplant. And he is not a sick MEAN dude. He has his issues, but here he is, alive.

Mike's fluids were in his legs and feet, not in his belly, but many on this site have been through that. Some get drained as often as 2x a week. Lots of fluid. However, the fluid comes right back with paracentesis and needs to be done again. There is a procedure they can do called a TIPS. Look that one up. It has its pros and cons, but it provides many patients relief. It is considered a bridge to transplant however...so keep that in mind.

I am hoping your hubby is in recovery at this point. In its final stages, Liver Disease is not a pretty condition. You may be in for a bumpy ride.

Best to you and your family,

Mama Lama
Posted 2/23/2015 7:40 PM (GMT 0)
hi themiz

Thanks for your reply and support

He has always been a very heavy drinker but we lost my mum 16 months ago and he went right of the rails. He was diagnosed just before Christmas he gave up drinking after Christmas apart from a few glasses of red wine or so I believe. He has seen the consultant twice and they took him straight in to drain his tummy as it is alcohol related transplant is not really an option in the UK.

Unfortunately he doesn't give me the whole truth either so I am just trying to get some information. I know the symptoms I stated as I have read the letters from the hospital but have to read between the lines as they don't like to tell you too much or put it in terms I do not understand.

I have been led to believe that 3-6 months is what to expect

thank you for your support
Posted 2/23/2015 11:42 PM (GMT 0)
Tish, We have a valued member here who was near deaths door with ALD. His name is "Ziff". Here is the link to Ziff's story. I hope it helps you. We care. Big Hugs

www.healingwell.com/community/default.aspx?f=25&m=3293465
Posted 2/24/2015 2:09 AM (GMT 0)
Tish, Sorry about your step-dad and mom. Sometimes, Not often, but sometimes it's takes tragedy to bring about change. There is hope even in the worst of liver disease issues. Honestly, Alcoholics don't have good success rates when it comes to fighting liver disease. Not everyone who drinks heavily gets severe liver disease. Those of us (myself included) who fight the mental and physical damages of substance abuse are double cursed. I've been sober for years after almost 35+ years of alcoholism. My outward body shows little signs of the damage done. Inside though is a liver that minimally functions. For that I'm thankful. I've eluded transplant by alternative surgery. Alcohol, drug free and less stressful life.

It is totally up to how he wants to survive the remainder of his days. He can fight and possibly beat this or deal with it. He can choose to allow the disease to run it's course without raising a finger in defiance. He can by all practical means kill himself by drinking until his body quits. The latter of these options by all accounts to date seems the most painful for all involved. If he chooses to fight (And by God he will fight) he'll gain something no wealthy man can buy.

Ziff
Posted 2/27/2015 12:33 PM (GMT 0)
He is very poorly today :(
There has been no talk of transplant he is so obviously not a candidate. Yes he has a consultant who talks to him gently avoiding all outcome issues.
They just send him home to wait it out it seems. He is a diabetic also which seems to be aiding his illness.
they said they cannot drain the ascites again for another week or so until his tummy is firmer. Also he cannot have a tap fitted no reason just a no. How long does it go on like this they are all so pleasant but not actually doing anything. Or is this what is going to happen to the end he has been give a Child-Pugh score of C but that doesn't help either. I just want to shout at them to do something positive
Posted 2/27/2015 4:00 PM (GMT 0)
I think the most common question I see from caregivers or family members is:

"How long can they live like this? Or, "How long will they live?"

I wish there was something I could say to make this better for you and your step-Dad, tish. ESLD is so very difficult. We, the loved one's, just want to fix it...make them better, and we can not. We want to know how long will they live, how much will they suffer, what can we expect. But really, the best guess or estimate is often not even close. No one knows how long, really.

We have seen people given 3-6 months to live who go on for a year or five....or, longer. Others crash and decline quickly and die without a transplant. Some are too sick for a transplant, but continue on for a long time.

Are you his sole caregiver, tish? What is your step-Dad able to do for himself? At some point, he will need full time care, most likely. You may be there now.

I have been my husband's caregiver and wife for several years now. Sometimes he is rather good and we have somewhat of a reasonable day. He can do most everything for himself during those times. Other days he does not know how to work a remote, to take medication, eat, and at times he needs to be hospitalized for hepatic encephalopathy. A lot can go very wrong, very fast.

My husband was told to seek a transplant if he wanted to live....and that was 2 years ago. There is no cure for cirrhosis, except a transplant. Themister has been scary sick. We still are waiting still, for a transplant and hope he will remain healthy enough for surgery, but sick enough to be transplanted.

Themister's liver was damaged from decades of a silent virus he had no idea lived in him. Hep C. And when we found out he had the virus...he already had cirrhosis. Regardless of the cause of cirrhosis and ESLD, here you and I are. Loved one's who are very ill.

There have been days I did not think themister would survive a week, but he keeps hanging in there. We are here for you. Big Hugs
Posted 4/20/2015 2:22 PM (GMT 0)
Hello

Well I thought I would give an update for myself as well as others

He is still drinking unfortunately nothing like the amount he had been and not as often

Acites being drained every two weeks and Child Pugh is now score B also his kidneys are now failing yes I am on a negative trip sorry.

I feel that he is messing with me sometimes cause thats how I feel I should go see him today but have decided to have a day or two off his sister is going to see him so he will not be alone and tomorrow he will be in the hospital all day being drained.

I will go see him the day after so should be doing something instead I find myself searching the internet to find advice and help.

I do hope others are feeling well and have the love and support they need :)
Posted 4/20/2015 3:53 PM (GMT 0)
We haven't hear from you for awhile. I'm s sorry your step-Dad is having more problems and his kidneys are now involved.

Since he is not a candidate for transplant and continues to drink...you are doing all you can by keeping him as comfortable as he can be. It's good you have some help with his sister coming in. Is there any way she can take regular days to spell you off each week?

I hope you get out and do something for yourself today. Easier said than done, I know. Keep in touch, Tish. Big Hugs
Posted 4/21/2015 2:28 AM (GMT 0)
When I was around 14 years old my uncle had developed ESLD. He continued to drink even after his diagnosis and then the ascites increased over the months soon after. Needless to say he was finally admitted to a hospital for the final 2 weeks of his life. The staff kept him doped up to ease the pain and my aunt (classic enabler) smuggled pints of liquor in the room for him till the day he finally died. She'd do anything for him and nothing ever satisfied him. A abusive drunk he was and as his time grew shorter the worse he got. She fatefully catered to him though through it all.

I mention this Tish simply to give you a glimpse of what may lay ahead. I myself went through a period in my life when I thought all hope was gone, possibly like my uncle may have felt. I hated the world and cursed God for the condition I was in. Somehow I'd think it inescapable to not think that way to most of us. Three to six months of agony and endless thoughts of a wasted life to look forward to. I was given that same speech on a time frame after diagnosis. It's a bitter pill to swallow. My friend I suspect you'll be seeing alot of different emotions as time passes by your step-dad.

Prepare yourself mentally for the worst now and everything slightly better will be a success. Step dad may not want to hear that at first but the truth in that statement may just carry him on to years of reasonable health. Do yourself a favor and do no more than you can. Be there for him when he permits, Take no crap off him and make sure he understands that he owns this situation and not you. You can search the internet, This isn't the only site with info. The problem that I and so many others have had from doing this is that we aren't doctors. Most articles are written for doctors by doctors. The folks here are average people who learned our medical knowledge by cornering nurses, Doctors and possibly the occasional janitor to get a layman's understanding of whats going on. As always my best to you and yours.

Ziff
Posted 5/4/2015 12:20 PM (GMT 0)
Hi
I thank you for your messages Ziff thank you for your message it breaks my heart to see such waste of life but you are right it is doing not mine. I did want to foster children but thats not going to happen for a while now but I suppose everything happens for a reason.

I hope that you are feeling better with yourself :) and look forward as I hope I will xx

SD on the other hand is drinking more or seems to be and is getting to be a MR ANGRY but I know its not for long so I continue to smile and trot to the doctors as necessary. I am trying not to be annoyed with him so for now I can cope once again thanks for your messages
Posted 5/4/2015 1:37 PM (GMT 0)
There is a sad post today of a brother in much the same state. I am sorry to say, he did not make it. Some change their ways in time, others do not. A sad way to go as there is no need for the untimely end if the patient "gets it" soon enough.

Focus on one life YOU have to live. It is the life you CAN control.

Hugs,

Mama Lama
Posted 5/4/2015 1:47 PM (GMT 0)
Tish, Unfortunately all you can do is exactly what your doing. My heart goes out to you. Love from afar as best you can and don't get wound up in a situation that drags you into his cesspool. I told my brother recently not to call when he's drunk. I'd do anything for him but refuse to be a spring board for his own death. I'm fine with him making his choices to continue abusing himself but I don't want to hear or see it happen. He has a chance to fight it now. He's got all the reasons anyone would need to desire life but he still play's with fate. I'll be there for him holding his hand should he want to give it a try. Until the time I'm needed I'll let him go.

Ziff
Posted 5/4/2015 2:22 PM (GMT 0)
Welcome tish2 !! I hope some of our members can be of help...But i have to agree with A.Ziffle and say the only one who can help him is himself..I know from my experiences that if your a alcoholic and don,t go through a program to help you the you will not ever be on the list...I guess the doctors see no point in giving you a new liver to ruin..or kidney...As far as getting drains you can get as many as you need..But remember every time you are at risk of infection...When i got a drain they used every possible means to insure i would not get one but alas...i got hit twice!! and that just sucked!! antibiotics totally destroy and taste for food and you don't want to eat...But you must!!...I hope your step Father see's the road he is headed down and does a abrupt turn...I had a friend and coworker that got diagnosed at the same time as me and did not stop,he lasted 3 mths god rest his soul..So A.Ziffle is right on the mark...Maybe you can relay the message to step dad? Personally i didn't have that trouble but i was witness to many that did,and i really don't like to say this but those who wouldn't change are no longer with us..Have a good day, people change!!!
Posted 5/13/2016 11:23 AM (GMT 0)
Hello All

I hope you are all as well as can be think of you often.

I have not been on here for a while as life has been pretty rough, firstly my sister committed suicide by jumping off her balcony and I had to go to the hospital and sort out everything else as next of kin. We donated her organs and she had a very rare blood group so they took other bits. We received some lovely letters from the recipients and it makes you feel so much better.

Then I was diagnosed with a very aggressive breast cancer I am nearing the end of Chemo and ready for the next step radiotherapy yes its been a crappy time.

My step father has had to move in with his sister as I have not been able to help him as much. He is still drinking and he has had some more issues he is due to have a CT Scan on Monday but I do not know why.

It breaks my heart when I see him he is just such a mess but I have other things to deal with so he cannot come first all the time.

Sorry guys just felt like explaining my absence look forward to hearing from you :)

Tish


" Life has to get better"
Posted 5/14/2016 3:21 AM (GMT 0)
Tish no apologies needed for loss of time with the forum. My mother is a survivor of breast cancer. A friends wife recently passed with ovarian cancer. Don't know you personally but have firmly concluded you are strong fighter. Sorry about your dads lack of progress. I'm afraid for you/him he may be on the verge of a coma. My liver and kidneys shut down and I lapsed into a coma for about a week. How many liters are they pulling off during the Paracentesis procedure? Are the administering Albumin after the draining?


Ziff
Posted 5/21/2016 1:21 AM (GMT 0)
Tish, I'm glad you popped in. I am so sorry you are having your own issues. I'm glad to hear that a family member is pitching in with helping your Dad. Some go on this ride alone and after helping Mike for years I can't imagine how they do it.

Continuing drinking is not the best course for those with liver disease, but this is his decision and it is sad that he had not made a commitment to his sobriety.

Let us hear from you when you have questions. Or need support.

Hugs,

Mama Lama
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