End stage cirrhosis questions

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sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/19/2008 4:48 PM (GMT -7)   
Greetings all, this is my first visit and post. Here's the story, I would appreciate any advice, information or comments.
My brother in law just turned 40 in the hospital, one day after being diagnosed with end stage cirrhosis of the liver. Its due to 25yrs of alcohol abuse. The doctors say his liver is functioning at less than 10%. He had been sick with what he thought was the flu until he started coughing up blood, if his father hadn't stopped by to check in on him he would have bled to death. He is also raising his 3 daughters all under 17yrs. Here are a few of the questions I have. He works the family farm, will he be able to continue to be able to perform work of any kind? What is the survival rate with liver function less than 10%? How can we best support him when he comes home from the hospital in a week or so? We realize that any kind of recovery will depend on him, family can only do so much. What quality of life can he expect? The doctor did mention a transplant but he has a long way to go before even being considered, physically and mentally. As mentioned before, I would appreciate any information or experience you may be able to pass on.
Best regards

rainbeau
Regular Member


Date Joined Feb 2008
Total Posts : 39
   Posted 2/19/2008 6:52 PM (GMT -7)   

Welcome Sailordave!!  You have found the right place for information about end stage cirrhosis.  I am VERY new to this forum, and it took me a long time to post, but i gathered a great deal of information from just lurking in the threads and posts.  I highly recommend you spend some time doing the same.  EndStageLiverDisease(ESLD) is different for everyone, but we are all here to share information and help as best as we can. 

At this point, my husband has not been officially diagnosed with esld.  but he has not driven in almost a year. Farmers and their tractors are hard to separate...have you considered talking to some local farmers about taking over for a season or two???

has the social worker at the hospital talked to his daughters??? Clearly, there needs to be some extra efforts for them, either thru family or friends during this challenging time.

once again, i am a rookie, and i am quite sure pink grandma and shel and others will be here with more support.

thank you for posting...we are all going thru the same thing, and we are all pulling fo you and your family...

 

take care, 

rainbeau 

 

 

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/19/2008 8:46 PM (GMT -7)   
Hello SailorDave, And welcome to HealingWell, You are to be commended for searching for some information for your brother-in-law. And Rainbeau you did great. Rookie or not.
Dave like Rainbeau said everyone's journey through this disease is slightly different. My husband couldn't work the last 3 years of his life. But others are working well after being diagnosed with esld. It depends on the patient and the progression of the disease. Read through some of our old posts and you will get an idea of what to expect. Also the American Liver Foundation as a lot of good information on their website.
With only 10% of his liver functioning he needs to eat and drink things that are liver friendly and also concentrate on trying to get on the transplant list.
And yes it is up to him to get treatment and do what ever the doctors want him to, but having a good support system with his family is half the battle. It's a whole lot harder to try to do it alone. He is very fortunate to have such a good brother-in-law. Take care.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/20/2008 12:23 AM (GMT -7)   
Sailordave: Pink Grandma has very good advice. I copied the web.site num. for American liver Foundation and it has given me alot of insight. Thanks Pink Grandma.
I was never given a percentage of liver function when I went for eveluation. And I have seen several Dr.'s give me a survival range of 45 hours to 5-6 years. They really don't know . Nobody knows. Maybe it's best that way. You are truly a great brother in law to be so concerned . june

sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/20/2008 11:43 AM (GMT -7)   

Hello rainbeau, pink grandma and june17. Thanks you so much for responding so quickly. I'm in the process of looking through some of the old threads and the site for the american liver foundation. Our families live in nova scotia, canada. We have a local AA that will be of great help. He's had a couple of bad nights in the hospital, has had to be restrained and sedated. He really doesn't want to be in the hospital and wants to be home. I don't think he's come to terms with how serious this is, maybe things will change when they take him off some of the drugs he's on and when his body finally adjusts to being alcohol free. We've been told that he'll be in the hospital until next week at least. I'm away at school in another province and will be heading home on friday, my wife has been taking her parents to halifax to visit their son every couple of days. As you have experienced in the past, the family is torn. Life has changed for us all. My heart goes out to you all, i'm just beginning to understand what you've all been through or going through. This is truely heartbreaking but with help and kindness of strangers and the doctors, we are determined to help my brother in law. We just hope and pray that he will accept it.

Thank you

Dave

 

sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/20/2008 3:42 PM (GMT -7)   
I've just received more info from home on my brother in law, here's what the doctor says.

He could be dead in two weeks but he guarentees he'll be dead before his daughter turns 18 if he drinks.  He met with arthur earlier in the day and doc said arthur wasn't receptive or ready for help but when he heard the info again in front of mom and dad he admitted to having to do something.  So doc is arranging for a psycologist to meet with him. he wouldn't do it before arthur said the words himself.

We are all hoping and praying that he's serious and not just trying the placate the doctors and family. As we find out more I'll let you know.

I've spend the best part of the afternoon reading the posts on the various threads. A box of kleenex later and suffering from dehydration I can say only this, I never had any idea of the pain and suffering, the highs and the crushing lows. You folks have got to be some of the strongest people. I can only hope that we can find the strength and compassion you all have shown.

God bless you all.

Dave


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/20/2008 3:50 PM (GMT -7)   

Dave, welcome to Healing Well. As you can see this site is full of information and wonderful people. You'll find that most members are more than willing to help you thru this horrible time. I agree that your brother-in-law has to want to change before there is any hope of healing. I have worked with lots of alcoholics and unfortunately they do not remember what they said, did, or physically experienced while in DT's. That's the saddest part for me. The families see it and are crushed when they see their loved ones in restraints etc.but the patient clearly doesn't remember it. I personally wished I could video the episode to show the patient later but of course the law prohibits it. On the otherhand my heart breaks for the patient. I absolutely understand that their addiction to alcohol is so overwhelming they really can't help it. How horrible it must be for them.

You have come to the right place for educational and emotional support. You will receive good advice here and can vent all you want to. Feel free to ask questions too. There are people here that can tell you first hand what they went thru and some of them have overcome alcoholism so they are very knowledgeable. Keep us posted.

   Shelly


sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/24/2008 10:16 AM (GMT -7)   

Greetings, Art has been discharged from the hospital. His liver is functioning at better that 10% and he has checked himself into the local detox centre. They expect him to stay for about 5 days. He will have to go back for frequent check ups for the next 6 months, no transplant yet has he is not sick enough. He has set up appointments with the local AA as well as with a councillor. He is by no means out of the woods yet but has taken the first steps to heal. His mother has been very supportave but as his father has drank most of his life and "there's nothing wrong with me" thinks all Art needs to do is go easy on the booze, no need to stop drinking. His father is our next project as he's not taking it seriously. Thanks to all and best wishes.

Thanks to all,

Dave


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/24/2008 11:25 AM (GMT -7)   
Hi Dave and welcome to the forum. I am sorry it has taken me so long to reply to your post. Somehow I missed it. I have been working alot lately which has caused me to get behind.

You are a great person for searching for help for your brother in law. It is going to be a long hard road for him and his family. We learned a little over a year and a half ago that my husband has cirrhosis. He stopped drinking as soon as he found out. His main problems right now seem to be encephalopathy and swelling in his legs and feet. We were never given any kind of time frame or percentage of liver function.

I am sure you know that Art's father is wrong in thinking that it is ok for him to drink occassionaly. We were told even the small amount in cold medications can be very devastating to the liver. I wish you luck with his father, and I hope Art doesn't believe what his father is saying. Sometimes it is hard for people to change what they have been so used to. My husband's family are big drinkers. They use to visit us often when he drank also. Now since he has been sick we rarely see anyone. It kind of makes me sad.

I am so glad to hear that Art has checked himself into detox. You all will be in my prayers.

Please continue to come back for support or just to vent if needed. This sight might also be very helpful to his wife.
Butterflythree
 
There is always hope!


chefbonnie
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 2/25/2008 11:42 AM (GMT -7)   
Hi everyone, I am new to this so I may appear to be mixed up lol. My husband was diagnosed with cirrhosis and hep c 3a July/07 after a trip to the local emerg with what we thought was a flu of some sort. They ran routine blood work and found elevated blood work results and scheduled a ct scan for the next day as well as sending him to a local internist for 5 days later. They drained 500 cc of fluid from his abdomen and the ct scan showed shrinkage of the liver and obvious signs of cirrhosis as well as enlarged spleen. To make a long story shorter, we asked to be referred out of town and were sent to London Health Sciences Hospital the end of August. They put him on furosimide and spirolacolone and lactolose, told us he couldnt be treated for the hep c because his platelets are in the 50's
and they fear his liver will not tolerate the hep c treatment in the condition he is in. We were told to wait 6 more months to see how he is doing. Its frustrating because now he has severe daily headaches, dizziness, hand cramping so bad he cant even finish his meals because he cant hang on to his fork long enough to eat without cramping. Went to see family doc here in Guelph, she says these are the lows and you will have them from time to time. Called London and they bumped up his appointment 2 months but secretary says doc told her hand cramps and headaches are probably due to something else and back in November they felt he was doing much better and Guelph should be handling it ( holy s**t does anyone know what they are doing ) I feel like we are being pushy but its my hubbys life here, and they dont seem to care much. Can anyone suggest anything ????? How should we handle this and is there things that we should be asking for ??? Thanx for listening and thanx for just being here.  

sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/26/2008 4:46 PM (GMT -7)   

Good evening chefbonnie, so sorry to hear about your hubby. My thoughts on the medical system is this, be pushy, upfront, nagging etc. Unfortunately the old saying holds true, the squeaky wheel gets the grease. it seems that the more noise you make the more help you'll get if for no other reason but to get you out out of their hair. If that doesn't get the desired results, write and visit your MLA/MP. They often have enough stroke to get the results desired.

I don't have any advice for the rest of your questions as I'm a bit out of the loop with regards to my brother inlaw and his liver troubles. I'm only getting my info second hand from his mother and my wife as I haven't had a chance to talk to him directly yet. From what I've read in other threads, (you should read them too and have a box of kleenex handy), you will find many others that have gone through or are going through the same. They will give some insite as to what others are doing to cope with this. I've been trying to find a cookbook or something along that line for a liver friendly diet, so far not much luck. Art should be out of detox later this week and hopefully he's made some progress. Not sure what med he's on if any. He's not allowed any visitors while in detox so I guess we'll just have to wait until he comes home. He also has hepititus, not sure what type. The doctor said this is a good thing as it indicates his liver is working. I'm no medical expert but that doesn't sound right to me, I can't believe any type of hep is a good thing. As you, we are very frustrated.

Sorry I couldn't have been more help. There are many ears and shoulders here if you ever need one.

Best regards,

Dave


CHILI
New Member


Date Joined Feb 2008
Total Posts : 13
   Posted 2/27/2008 10:37 PM (GMT -7)   
Hi to all. I am new to this site but not new to the ups and downs of dealing with the medical profession. My son was almost dead from a bleed in 1999. He was told he would not live for more than two years. Go figure. I have talked with doctors, specialist, nurses, and even our pharmacist. Everyone has an opinion and no one agrees. Whew! Well, Jim is still hanging in there not well most of the time but bless him, he's still with us. I agree with Dave, you have to be aggressive with the medical providers. I sit in with my son when he is seeing his local doctor. Nice guy but like many much too busy. He makes mistakes. I take notes when we are at the office. The doc doesn't seem to read his charts prior to seeing my son. He changes RX doses that have already been changed the week prior. I have to let him know, as tactfully as I can, that he goofed again. He never admits his errors but he agrees that I am correct. The ER docs are the scariest. I find that even though I appear to be annoying to the docs, I ask lots of questions and I do get answers. Not always the ones I want but at least I get a response.

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/28/2008 9:12 PM (GMT -7)   

Chilli  You are so right about the ER Dr.s  We have made many trips to the ER for many different reasons.  In all of the 10 Dr.s I have seen in the ER  There has been one with some knowledge of ESLD.  Don't get me wrong there have been a few that call in a specialist to get some insight.  But there have been some that will not listen to me.  We had two occasions were they pump him full of morphine for pain.  We had one experience where he was in the ER waiting to be admitted for 9 hours and they wouldn't give him any lactalos!!!  I tried everything.  That just created more problems.  I have finally decided that I am not leaving home without the lactalose!!!!  Hang in there.  And be sure to let us know if there is anything we can do. 

 

JoAnn


sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 3/29/2008 12:05 PM (GMT -7)   
Greetings all, sorry for my absence but i've been busy with school. Just a quick update on arthur. He went for his first checkup wednesday, they put on 5 more bands around the veins, there is one that has become inlarged and they are quite concerned that it might rupture. They changed/upped his meds and he is suffering from constipation. The doctors says to take metamucil to relieve the constipation. He is still determined to go south in april for his vacation despite the doctors advice. he cannot get travel health insurance so we all hope nothing happens. His father is still presenting an obstical, just doesn't seem to understand the seriousness of the situation. arthus goes back again in 6 weeks for another check up.
 
Best regards to all,
Dave

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/29/2008 12:59 PM (GMT -7)   
Hello Dave, thanks for the update. This disease is a continuing struggle from one thing to another.
It seems to be a very common thing about families not taking this disease seriously. Up until 4 month before my husband died some of his family members thought that he was faking being sick. Can you believe that? I kept trying tell them that if he didn't get a liver transplant he would die. But it was like talking to a wall to some of them.

Take care Dave.........thoughts and prayers to you and your family.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 3/29/2008 1:39 PM (GMT -7)   

Hi dansbrother, thanks for the info. I think arthur is going to the domician or cuba, not sure which. I'll be sure to pass along the info to my wife, I forgot about the embassy/consulate people, very good idea.

Best regards,

Dave


sailordave
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 3/29/2008 1:48 PM (GMT -7)   
Hi Pink Grandma, good to hear from you again. We are doing our best trying to make all understand but it will be a long process. Arthurs friends are onboard and are taking him to AA meetings. The detox went well and so far he's dry. Arthur has never been one to ask for help from family and he doesn't open up with family either. All we can do is offer and hope he accepts.
Best regards,
Dave

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/30/2008 1:04 PM (GMT -7)   
Hi Dave, It is good to hear from you. I am really glad that Arthur is in AA. I will pray for his success.

Take Care
Butterflythree
 
There is always hope!

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