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Brother chronic liver failure - I need help

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Posted 1/25/2012 8:15 AM (GMT 0)
My brother was lifeflighted last Monday morning after he was banded to stop the bleeding due to a hole in his esophagus due to his cappelleries bursting. He was in an enduced coma and lifeflighted to a hospital in Pittsburgh. They drained over 5 liters from his abdomin and were concerned about his amonia levels but they dropped. Sunday they released him for the hospital and he is at home. He is eating and taking his medication. He takes the directic and the lactose (sp?) laxative and something that coats his bands. I just don't know what this all means. I am lost. On his discharge paper it stated chronic liver failure, chronic cirrhosis, chronic hepatitis. I am very stressed, tired and heartbroken. I am 44 and my brother is 48. Is this the end? He has never been hospitalized until 3 weeks ago when they took fluid of his abdomen (5 liters). I don't know if he has a chance or not. I am beside myself. My older sister was with him a the hospital and my sisters seem to think he is going to die and it is only a matter of time but after reading some of these posts, I am thinking this is the beginning of the end stages and maybe he has a chance. I am so confused.

Any help advice would be appreciated.
Posted 1/25/2012 9:01 AM (GMT 0)
Abbydoo,

Welcome to Healingwell. So sorry to hear how sick your brother is. Do they have an idea of what is causing his liver failure?
Posted 1/25/2012 9:15 AM (GMT 0)
alcoholism and hepatitis C
Posted 1/25/2012 9:24 AM (GMT 0)
he has been a heavy drinker for 25 years. he got hep c through sharing needles using drugs in his early 20's. He would get up and if he didn't have to work, crack open a beer. He always says I'm here for a good time, not a long time. He has not had a drink since he has been released but it has only been 3 days. I am afraid it is too late even if he stays stopped. I just ordered a book Dr. Melissa Palmer's Guide To Hepatitis & Liver Disease to try to understand. My sister had kept us all informed but I thought for sure he has no chance then I read some posts and thought, maybe he has a chance. I am totally confused and exhausted. I am so afraid.
Posted 1/25/2012 10:04 AM (GMT 0)
Of course you're afraid... it's not easy for anyone... a short intro... my partner... Mike had hep c... and ESLD... I was his caretaker for 5 years... anyways... if you read there are stories... on all sides of the spectrum here... people who quit drinking... people who didn't/haven't... people with transplants.. people without... so somewhere in all of this you should find some good answers and then have more questions... but for sure you will find people who are supportive and educated regarding ESLD... my own motto is Never say Never... take a deep breath... read the info at the top.. I have no doubt that one of the moderators will be here shortly and address your concerns more specifically.... for sure if a person with ESLD does not stop drinking... one dies... end of story... also this person would not be considered for a transplant until a period of sobriety was documented usually by attendance at AA meetings... this is specific to the transplant location's rules... first thing you can do for yourself and family is take a deep breath... educate yourself... and come back here often for further education and support... there is hope... and each situation is different... you are in my thoughts and prayers today... Sandia
Posted 1/25/2012 1:57 PM (GMT 0)
Hello Abbydo and welcome to HealingWell.  I am so sorry that your brother is so sick and that you are dealing with this.  I did it twice, once with my husband and again with my brother.   I do know how scared you are right now as do the rest of our wonderful forum.   We are glad you found us.

He's got a couple of things going for him.....his age for one.....and for two.......you.   Not sure what the family dynamics are....but he does need a caregiver as well as someone to be his healthcare advocate. Some days he will be able to do things for himself and then somedays he will not.  Looks like one or both jobs maybe be yours????

Liver patients have and do come back from the brink.........we have a number of them.  So think positive and don't give up.  

You're a wonderful sister to get educated on this disease.  I've always said.....you have to know your enemy in order to put up a good fight.   We also have an educational thread in the resource folder at the top of our forum.  It has lot's of good information in laymen's terms. 

Abby hang in there......you now have a wonderful internet family to help and guide you through this.....Take care.........thoughts and prayers.......

Posted 1/25/2012 2:13 PM (GMT 0)
Thank you so much for your kind words. I am the youngest of 10 children...7 girls 2 boys then me. My other brother committed suicide years ago after my mom died of colon cancer and this brother is the 9th child. There are at least 3 of us in the area to help with him. I do hope but I also want to prepare. I have 2 teenage daughters that I want to be prepared as well, I do realize you are never fully prepared however, this is just now sinking in for me. I have been up all night reviewing information on different forums. I am trying to let this information sink in and be there for him the best I can. Thank yo so much for your support.

Post Edited (abbydoo32) : 1/26/2012 4:25:16 PM (GMT-7)

Posted 1/25/2012 2:34 PM (GMT 0)
Abby, welcome to the forum. Melissa Palmer's book is a very good one...very informative.

Your brother absolutely needs to give up the booze entirely if he wants to live. He has already done severe damage and the hep C (which I also have) is doing further damage.

The resource folder is at the top of the page, entitled Hepatitis Resources. There is lots of information in there regarding liver disease.

Your brother also needs to eliminate red meat from his diet. It is the most difficult protein for the liver to process, especially a damaged liver. If he improves his diet by keeping the sodium low and eating lots of fresh fruit and veggies, it will go a long way towards fighting his liver diseases.

BTW, it's spelled diuretic and the med is Lactulose. There is also a list of medical terms and some of the common drugs in the Hepatitis Resources folder.

I deleted your previous post on an old thread since it was essentially the same and this is where your post should be.

Hugs,
Connie
Posted 1/25/2012 3:09 PM (GMT 0)
Thank you very much. I saw the post above mine on another thread when you told someone else to start a new thread AFTER I posted there. He was released from the hospital Sunday and has not been drinking....day 4. I thought he would start again right away but he hasn't which gives me some hope he wants to live. He has known about the cirrhosis and hep c for years. He has never attempted to stop that I can remember. Trying to keep the hope while trying to stay in reality (that I have only been in for about 10 hours!). The information is great. Gives me a real sense of peace and calm. I have not slept just lying there worrying for the last week. It pays to be informed.
Posted 1/25/2012 4:15 PM (GMT 0)
Abbydo32

  Welcome...take some deep breaths.   You will need some stamina (and education) for the caregiver role... 

 Hi, I'm Angie1953 and my hubby has ESLD and Hep C and is currently in a nursing home (we call it the B & B, as he feels he's too young for a Nursing Home).  He is 65 (me 58) and has had Hep C for over 30 years, but in Feb 2011 it all caught up with him and his health got really bad.  I was his 24/7 caretaker for about 10 months and then I just got worn down and he is spending some time in the B & B, while I get rested, back to work and see if I can find a way to take care of him at home again.

  There are many helpful folks here and they give very practical advise and don't sugar coat things...if it needs to be said someone on here will say it.  It helps to know that you get the straight scoop..and each person's experience is a little different.

  The caregiver job is not for the faint of heart.  It is often frustrating, heartbreaking, angermaking, etc.  You can't be thin skinned.  It is one of the toughest things I have ever done, and it will be helpful if you and your other brothers and sisters can share the job. 

   ....must go to the B & B now.   So sorry to read that your brother is sick and so young.  But you will find there will be good days and bad days...enjoy the good days.  Later Abbydo..welcome to our little corner of the world   :( 

Angie1953

PS  I usually am more upbeat, but hubby was mentally "not with it yesterday" and was a heartbreaker to see him thus, after  a few "good days".

   

Posted 1/25/2012 5:00 PM (GMT 0)
Thank you for your support Angie.. I appreciate each and every tip, kind word, everything form all of you during this difficult time. God Bless you all.
Posted 1/25/2012 6:16 PM (GMT 0)
Hey Abby , I dont have Hep C but was diagnosed with terminal E.S.L.D a few years back . I am a alcoholic or a recovering alcoholic , Been sober since diagnosis . I have struggled through your brother's predicament and seen many ailments associated with liver failure , It's hard to say if your brother will make it at this point , I was given 3 months initially to get my personal affairs in order . The good news is I made it through almost 4 years and have regained most of my normal life back . The bad news is it took over a year for me to start seeing a glimpse of hope , Chronic Ascites build up was the biggest part of my battle but other things like umbilical hernia , Encephalopathy , Renal failure and today I have very little liver function at all .
Medications and surgery has gotten me through to this point , Abstinence from alcohol , Low sodium diet , And being very careful about what I eat . I currently am being treated by one of the top university's Hepatology dept. in N.C and at one point was active on the transplant list . I have since been removed off active list and am stable with a low MELD score . It is very likely at some point I will need a transplant but for the moment I'm fine . There is hope that your brother will make it but he has a long way to go . I will try to check back in this afternoon and fill you in on some details from my perspective . I also am around your brothers age and lived with a similar motto as he .


A. Ziffle
Posted 1/25/2012 6:51 PM (GMT 0)
Thank you so much! This gives me some hope. You have no idea what your post means to me. Ironically, as kids my brother and I used to call my sick brother Arnold Ziffle from Green Acres:) Thank you so much. You have given me some hope. Thank you so much.
Posted 1/25/2012 7:52 PM (GMT 0)
You're going to be right at home here Abby.  I can see that already.

 I am the youngest of 11.  The brother that I cared for was number 10.  Like you I had lots of older brother's and sisters.....but unlike you only 2 sisters and 8 brothers.

 We call it a roller coaster ride because of it's many ups and downs.  Your sisters will come in handy during the down times.  Hopefully your brother will follow all the doctors orders and start stablizing soon.

Thoughts and prayers.........

 

     

 

Posted 1/25/2012 8:21 PM (GMT 0)
Abby,
Welcome to Healing Well. So sorry that your brother is sick. My husband has cirrhosis due to alcohol. He has not suffered from any complications, and we are very thnakful for that. We he was first dx, his doctor said the very best thing he could do for his health is to never drink again. Except for one slip, he has done that and it has made a HUGE difference in his health. I know your brother is only on day four...but that is a start. The single digits will turn into double, then you will be counting weeks, then months. Your brother is lucky that he has a loving sister like you to be on his side. And he is still young.
Welcome.

Emma
Posted 1/25/2012 8:34 PM (GMT 0)
Abby -
My mom received great care in Pittsburgh.

What have you been told is the next step for your brother as far as follow up care?
Posted 1/25/2012 8:36 PM (GMT 0)
Thank you so much. You have no idea how much you information and support has helped me already. Although we are a big family and we are communicating about him, we all know that sometimes you get the best support from stranger or a friend, including cyber friends:) I am so glad I came across your forum. I am starting to understand a little and feel more capable of dealing with this instead of being "the stupid little sister". Not that they treat me that way but that is how I feel not understanding some of the lingo, medications, technical terms, etc. hearing everything second hand, or third hand. He has confusion and I need to go to my sister that is in charge of his medical stuff. She is really great. She just stepped in and took charge, as older sisters tend to do. She was down the hospital with him constantly and heard everything first hand from the dr. and I was home busy with my kids except to visit. Thank you all so much.
Posted 1/25/2012 8:42 PM (GMT 0)
My brother is scheduled for blood work to check his levels. They originally said he was to have the bands checked and another scope at 2 weeks, but, after we discussed health insurance (he has none now. my sister is waiting on his birth certificate to get medical assistance for him) they pushed back the tests to 4 weeks til after he has insurance. Can they do this? Don't they have to treat him. Medical assistance will go back 90 days and we are just waiting on his birth certificate. We can take him to the VA as he was in the Air Force years ago but....pppffftt. They would probably give him water pills for his abdominal swelling. We do want him to have proper care. Can we push this issue?
Posted 1/25/2012 8:48 PM (GMT 0)
Abby,
I believe that Debbie "cablepoodle" --- her husband is receiving his care through the VA. When you are logged in to HW you can go to the search box near the upper right corner and type in a search word(s) to go back through old posts or to search symptoms...whatever.

My husband is scheduled for a banding next month. His GI doc said that there would be a follow up scope to check on the banding and that it would be about a month after the banding procedure. So maybe waiting until 4 weeks after would be okay.

Although my husband has not suffered from any swelling, from reading here it seems that patients suffering from edema and/or ascites do take one or two different types of diuretics. So if you brother could get some care through the VA that would be good.

Emma

Post Edited (healthynow) : 1/25/2012 2:33:01 PM (GMT-7)

Posted 1/25/2012 9:04 PM (GMT 0)
what about the real expensive liver medicine we cannot afford to get him. The prescription is $1,200!! Can the VA supply him with that type of medication? Don't get me wrong, I am grateful for whatever the VA will help with. I don't mean to sound disrespectful, but, have had some other family member that we didn't feel had adequate care. Sorry.
Posted 1/25/2012 9:29 PM (GMT 0)
My brothers discharge papers said follow up in 2 weeks. When it came time to schedule and about insurance, the pushed it to 4 weeks. We just don't want to wait for his care if we can have him to a follow up at the original 2 weeks as they suggested.
Posted 1/26/2012 2:27 AM (GMT 0)
Abby, it might be best to try to get your brother seen at the VA. Debbie/Cable Poodle's hubby is getting care there and is on the transplant waiting list, near the top. They provide transportation there, too, which is out of her home state.

It would likely take longer than 4 weeks to get SSI/Medicaid.

Which medicine are you talking about? Is he on Xifaxan along with the Lactulose?

Medicare is paying the majority of cost for my post-transplant meds, which are thousands of dollars. I have a small co-pay.

In answer to your question asking if they don't have to treat him regardless of his lack of insurance: No, they don't have to. In the ER, yes. In clinics, no.

Hugs,
Connie
Posted 1/26/2012 2:44 AM (GMT 0)
Abbydo,
I know about that $1,200 medication. Xifaxan, I'll bet. Same here, Liver transplant Dr. prescribed it to help with the confusion. We couldn't afford it and my hubby is not getting it...and most of the time he is doing okay. Sometimes too much meds are not a good thing either. He seems to be doing fine without it, but I note some others here take it with good result.
The key for my hubby's good days is very simple...he has to poop A LOT. If he goes 24 hours without pooping, confusion pain etc.
Sounds so simple...but each time he gets bad mentally and pain wise has to do with NOT POOPING. I told him his JOB now is to poop 3X a day, per Dr. (I tried all kinds of other things I thought might help,,,but nothing helps like this. Since liver can't filter toxins out of body well anymore, only way out is poo.) Toxins make his brain foggy. Anyway this is now it works for my hubby. It helped me understand to have it explained this way.

Angie1953 (Oldest sister of 6)

Posted 1/26/2012 2:47 AM (GMT 0)
Two A. Ziffles?   TWO MUCH !!  redface

Angie1953

Posted 1/26/2012 3:01 AM (GMT 0)
Abby , Yeah A. Ziffle the neighborhood piggy here . As mentioned taking him to the E.R would be your best option at this very moment should something go awry . I would strongly suggest you get him into some form of assistance program quickly , Medicaid , Medicare , VA . As far as the medications are concerned he can apply for some of his meds like Xifaxan through the patient assistance program at Salix ( Manufacturer ) a 90 day supply can be received with no cost to him as long as he has a prescription . Alot of drug companies have websites that have downloadable request forms for these programs . Look at his prescriptions and who makes them , Good chance he can not pay anything for them if you do some research .

Another thing that has been discussed here many times is the need to keep your own set of medical records ( Make copies of everything you can get your hands on ) this golden rule will save him alot of grief when the hospital loses something , They will and they do believe me . I currently have a filing cabinet drawer over 1/4 full from medical records from day one , And I have had to produce my records 5 times for the hospitals various departments in the last few years . Don't depend on a overworked secretary to handle your documents properly .

A. Ziffle
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