Help me understand the observable symptoms of liver disease.

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glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/22/2008 11:12 AM (GMT -7)   
Hi Folks!
This my first post and from what I've read you guys are really helpful not only with the facts but with much compassion as well. Perhaps someone will be able to help me understand the symptoms I am observing in a friend who is diagnosed with final stage alcohol related liver disease cirrohsis/hep C.  Here's the story:
 
My friend was admitted to the hospital 3 mos. ago when he became very sick. He was extremely yellow (skin and eyes) fluid on on the feet and abdomen. At that time, the doctors were not sure if he would respond to drug treatment (I believe it was some type of steriod) to regain some liver and renal function. At that time there was minimal function of the liver yet to my surprise he did improve and has since returned home. My friend did give up alcohol and has not touched a drop, the yellow has faded from his skin and eyes with perhaps just a touch in his eyes if you look for it. He is on a salt-free diet with an emphasis on consuming as much protein as possible. While in the hospital, 5 liters of fluid was removed from the abdomen. 4 weeks later 6 liters of fluid was drained, he was disoriented and kept falling. Now 3 weeks later 10 liters of fluid has been drained yet his mind is very clear, very stable balance, feet are slightly swollen (much better than before) and he is able to putter around outside for short periods of time taking a rest every 15 mintes or so. His weight is still dropping from 196 in June to 164 this week. He looks very gaunt and his muscle tone has deterioated. To be frank he looks like he is a victim of starvation withe exception of his abdomen and legs. 
 
The doctor says he must have a liver transplant to live and family members are lining up to be tested for compatibility but of course there is the 6 month waiting period since it was an alcohol induced condition. After taking him to the hospital this past week for draining, I had the suspicion that he was probably not going to live long enough to recieve the transplant and I know medical staff try to be positive around patients to keep morale up yet I am haunted by this feeling that his passing may be near. The doctor says his bloodwork is improving yet he eats very little and seems to be wasting away before my eyes.  
 
I know you guys have seen much of what I have described before and believe me I'm not giving up hope for him yet I feel the need to understand what I'm observing in my friend. I live about 90 miles from him so I go once a week and spend the day with him, sometimes taking him to the doctor so his fiance can continue work. My friend is 40 years old. I am also a pastor so he feels comfortable in confiding with me what he's been dealing with mentally, emotionally and physically. I'll support him in any way I am able.
 
Can anyone offer some advice as to confirming or contradicting my suspicions? What should I expect to see as the condition progresses?
Thank you.

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/22/2008 12:47 PM (GMT -7)   
Hello Glwired and welcome to HealingWell. Wow what a good friend you are.
Sorry that your friend has this devastating disease.


I just bumped up a thread entitled " End stage liver Symptoms & Developements". It may give you an idea of some of the things that may happen with friend. It should be right below this post.

Some patients develop or experience some or most of the list. Each patient goes through it a little differently and it depends a lot on how well they are taking care of them selves as to what and when some of the symptoms appear.
It's a good thing that he hasn't experienced encephalopathy (confusion caused by high ammonia levels) yet. That's one of the most common that we hear about on the forum. My husband passed away from this disease last year and once he started experiencing the encephalopathy it went downhill from there. But as I said it is different for everyone.

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


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/22/2008 2:13 PM (GMT -7)   

Hello Glwired, Your friend is very lucky to have such a compassionate friend yeah .  My husband has had liver disease for almost two years and since he quit drinking has done much better, it constantly amazes me what the human body can endure so don't give up hope for your friend.  This forum has really helped me to deal with it all and not feel so hopeless, the encephalopathy is the worse part of this disease, when I first found out he had cirrohosis I just knew he was going to die but he is hanging in there waiting for a transplant.  There is always hope,

 

Judith


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/22/2008 2:59 PM (GMT -7)   

Hi, Glwired and welcome to the forum.  I am sorry your friend is in such bad shape.  PinkGrandma mentioned that he doesn't have encephalopathy yet; however, you mentioned in your post that at one point he was "disoriented and falling."  This could have been encephalopathy, which is a very high amount of amonia in the system.  Or it could have been something else.  At any rate, I was surprised about the emphasis on protein, as most hep C patients are told not to consume much (if any) animal protein, especially beef, as it is hard for the liver to break down.  However, with his muscle wasting, I can see the need for protein.  It doesn't have to be meat, though.  Cheese, eggs, milk or ice cream, nuts, beans, all can supply the protein he needs.  Iron is also not good for a damaged liver.  Is your friend going to AA meetings?  I would certainly recommend it, and the transplant coordinator will require it, if he is to be eligible for transplant.

As PG said, there is a topic on the symptoms of end stage liver disease.  Not everyone gets all these symptoms and they may not be in that order.  I was diagnosed with hep C in '93 and developed liver cancer and cirrhosis as a result.  However, I am now cancer free and doing pretty well, aside from constant fatigue and elevated liver enzymes.  I will be meeting with my hepatologist early next month to discuss possible treatment. 

Your friend can improve by taking care of his health, meaning NO alcohol and a diet heavy on fresh fruits and vegetables.  Also lots of water.

There is always hope.  He is lucky to have you as a friend.

Hugs,

Connie


Post Edited (hep93) : 8/22/2008 4:12:14 PM (GMT-6)


glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/22/2008 8:48 PM (GMT -7)   

Thanks guys for the info and encouragement. The list supplied by PG is very helpful. My friend did have a short period of elevated ammonia but it lasted only about a week and cleared up. I believe his lactulose was adjusted during that time and it seems to be working very well at the moment. I'm encouraged by his determination not to drink again and I believe him. His appetite is virtually nonexistent due to nausea that arises after a few bites so I suggested protein shakes using milk instead of water (it does make them taste better) and he tolerates those much better to supplement what little he eats...Hep93 you are right about the beef, he's not to eat any. There was something interesting that one of you mentioned about anger...I've certainly seen that flare a few times when he talks about his condition. I thought it abit excessive at the time and have learned to remain silent and just listen until he works through it then his mood will swing right back to the opposite. as I said it happens alot when he talks about his condition but can occur over other minor things. I thought it odd but now I see it is a symptom.

Hep93 mentioned AA and I know my friend has a big problem with this which stems from a bad past experience. There is only one meeting in his area which is 20 miles away and transportation is a bit of a problem (he is not physically strong enough to drive). I think his doctor has worked out an alternative with a psychiatrist that would be acceptable to the transplant board. I told him quite frankly that this was his life that is in jeopardy and he needed to do what he needed to do to live. I know he cheats some on the salt-he said he's found it easier to give up drinking than to give up salt. Again I repeated the same...do what it takes to live.

Yall have been very helpful and I appreciate your counsel ( oops my N.Carolina accent slipped out) I'll be in touch as I try to gain more understanding of this condition so I'll be a better help to him.

Thanks so much!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/22/2008 10:37 PM (GMT -7)   

That's good that a psychiatrist will be an acceptable substitute for AA.  You are right--your friend absolutely needs to do everything that is required of him to receive a transplant.  about the salt:  Lemon juice is a good substitute, as are herbs and spices, and even Mrs. Dash.  When one gets used to less salt, things that you once found tasty (like chips) seem waaaay too salty.  It's just a matter of retraining the palate.

Best of luck to your friend, and please do let us know how he progresses.

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/23/2008 5:38 PM (GMT -7)   

Glwired

My husband has cirhossis.  He was diagnosed a little over a year ago.  He is having all the symptoms your friend has had.  At one point early on they drained him three times in one week.  about 25 liters.  They put him in an ambulance and took him to Vanderbilt.  I don't think the Dr. here had ever seen anything like it.  He has never been a real salt freak but has had the same problem as yous friend.  He just cannot give up the salt totally.  It has taken over a year but we have managed (somewhat)to control the fluid problem.  We were told to cook with NO salt then sprinkle about 1/4 tsp on the food before you eat it.  It worked!  Everything must be fresh no canned goods.  He also has no muscle mass and has lost about 70 lbs.  The soy protein is the best.  The whey protein or any animal base (as my daughter would say if it has a mama) is no good.  I was sure my husband was going to die a year ago.  He was in the hospital every other week for over 8 mths.  He has had three blood transfusions, been drained more times then I can count and also vomited for almost a year.  They have finally got the vomiting and nausea under control.  I hope I have helped you in some way.  One of the hardest parts of this disease for me is I just can't seem to learn it all.  It is so very complicated.  So read as much as you can and thank you for being his friend.  Its hard to immagine what any of us would do without friendship.

JoAnn

 

 

 

 

 


grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 1:18 AM (GMT -7)   
hi everyone1this is my first time too iam very new at this my daughter gave me a computer so i can vent somewhat.

grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 1:37 AM (GMT -7)   
hi my name is joann, 1 year ago i went into the hopsital. i was put into icu they told my daughter i had 1 month to live, well that was the longest month of my life.lol i was diagnosed with cirhossis of the liver. i had paretenitusof the stomach,hep c.iam a diabetic also. when they sent me home i was 3xs my size from water i drank nothing but erbal teas and healthy foods. iam in a lot of pain all the time swollan on my hands and feet some days i cannot even walk. lately i fall a lot for no reason at all or a least none that i know of i tell my daughter and all she keeps saying is this how its gonna be from now on no one tells me anything .maybe you can give me some input help joann

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/24/2008 5:37 AM (GMT -7)   
Hello JoAnn, welcome to HealingWell. So sorry that you have this disease. Take an hour or so and read over some of our older posts. There is a lot of information on this disease to be found. We have covered it almost A to Z.

You have found the right forum. We have patients or caregivers of probably most forms of hepatitis and/or liver disease. So you won't be alone in your travel through this devastating disease.
May I suggest that you start a new post and introduce yourself to everyone. It's very easy to for us to miss your post or you having trouble trying to find it again when you are replying to someone else's thread as your first post.

Take care ...Thoughts and prayers............
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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 8/24/2008 7:56 AM (GMT -7)   
Hi Joann, Welcome to the forum. I am so sorry that you are dealing with this terrible disease. The problem you are having with falling alot may be from encephalopathy. Do you take lactulose? My husband had problems with falling alot and mental confusion. I was os afraid that he was really going to hurt himself. Since he started taking the laculose regularly he rarely ever falls anymore. He also has trouble walking at times, because his legs hurt so bad. He has had knee problems in the past, so we are not sure if the pain is caused from past problems or water is building up on them. He has a doctor's appointment tomorrow. I am hoping that you will be able to tell him something then.

I am gald that you have found us. There are very many caring, knowledgable people here whenever you need them. They have really been a life saver for me. When my husband was diagnosed with cirrhosis, I was devasted. The people here have made me realize that there is always hope. I am not so willing to believe that this is the end now.

I hope you continue to come back and talk. My thoughts and prayers are with you.
Butterflythree
 
There is always hope!


grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 10:47 AM (GMT -7)   
Butterflythree said...
Hi Joann, Welcome to the forum. I am so sorry that you are dealing with this terrible disease. The problem you are having with falling alot may be from encephalopathy. Do you take lactulose? My husband had problems with falling alot and mental confusion. I was os afraid that he was really going to hurt himself. Since he started taking the laculose regularly he rarely ever falls anymore. He also has trouble walking at times, because his legs hurt so bad. He has had knee problems in the past, so we are not sure if the pain is caused from past problems or water is building up on them. He has a doctor's appointment tomorrow. I am hoping that you will be able to tell him something then.

I am gald that you have found us. There are very many caring, knowledgable people here whenever you need them. They have really been a life saver for me. When my husband was diagnosed with cirrhosis, I was devasted. The people here have made me realize that there is always hope. I am not so willing to believe that this is the end now.

I hope you continue to come back and talk. My thoughts and prayers are with you.

thank you butterflythree i thought i was losing my mind there for a min. lolmy memory is shot and the falling is realy scareing me.there are so many things i want to ask i just dont know where to start.

grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 2:42 PM (GMT -7)   
thank you all for posting me back you are all very generuns people and im grateful i have found this web site yeah

glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/24/2008 3:02 PM (GMT -7)   

Thanks JoAnn,

I see some striking similarities in what you described and what my friend exhibits. The rapid weightloss really scared me more than anything...so things are not as dire as I imagined. I've been reading through many of the older posts and it's been a big help in understanding the nature of the disease. Finding good informative material online is exhhausting...luckily or should I say providence led me to this forum. I've never posted to a forum before so it took me a few days to understand the ins and outs. I do feel more confident in helping my friend combat this condition through many of the suggestions that all of you have posted.

I looked through the booklist that is linked to the forum...any suggestions for making a choice? I'd like to get one of the cookbooks and one that explains the disease without getting too "greek."

I've also noticed a few mentions about some herbs...any thoughts or experiences with those?

 

Thanks in advance,

Gary


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/24/2008 3:30 PM (GMT -7)   

Hi, JoAnn.  I'm glad you found us.  Are you on a "water pill;" i.e., a diuretic like Lasix (generic is furosemide?)  That would help a lot with your fluid retention.  Also, strictly limit your salt intake.  Canned foods have a lot of sodium, as do frozen dinners, so it's best to eat fresh or frozen vegetables.  Get in the habit of reading labels for sodium content.  These tips will decrease the swelling you experience.

Glwired, the only herb I know of that is specifically used to eradicate hep C is milk thistle.  I know someone who cleared the virus with that.  I took it for awhile, but didn't notice any difference in my liver enzymes, so stopped taking it.  There are other things one must do while on milk thistle, such as NO carbonated drinks.

Hugs,

Connie


grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 6:28 PM (GMT -7)   
hi connie yes iam on a water pill and it dont seem to work i wake up less swollan but by 3pm i can barely walk the paint in my bones hurt so bad at times i dont even want to get up in the morning but i do i drink a lot of antioxident teas for the liver i feel lately like the floor slides away from me and thats usually when i fall i get pains on my right side a lot like someone is tightening a rope around me whats that?

grannypants
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/24/2008 6:40 PM (GMT -7)   
hi gary when i was losing weight i went from 210 to 157 in one year now i think iam blowing up but not from food i hardly eat and when i do eat it comes back up when i was in the hospital in icu a year ago the ruberband my liver with a lot of rubberbands so i wont bleed every once in a while one breaks and i bleed from the liver but it goes away they also did it to my throut because the food from coming up so much streched it now i have trouble swallowing cause it hurts i drink all different teas all day eat a lot of fruit and vegies


joann

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/24/2008 8:56 PM (GMT -7)   

Grannypants, your diuretic dosage may need to be adjusted.  You need to contact your physician and/or make an appt. to see him/her.  Meanwhile, try to watch your salt intake and perhaps your fluid intake, as well.

Connie


glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/30/2008 1:28 PM (GMT -7)   
Hi everyone! I've been on the go this week and haven't had the chance to post. I didn't get out to see my friend this week but we talked afew times. The information that I've gleaned through this forum has been so beneficial and has prepared me for things to be aware of as I deal with my friend. Actually he called me yesterday and was just deep in the dumps, said he'd been up all night worrying over things that he knows shouldn't bother him. I remembered reading about the states of anxiety, depression, mood swings and was able to explain that these were symptoms of the disease. So we spent about an hour just talking things through and he seemed to calm down somewhat. One thing he's come to understand is that he's not taking his medicine properly during the day while he's alone. So when I go down to visit Tuesday we're going to come up with some plans to deal with some of these things. I think reality has gotten through the denial and he's becoming more serious about his condition...with regards to the things that he is able to do for himself (strict diet regimen, learning about the disease and symptoms to better communicate with his doctor, etc..).
 
I do have a question regarding fluid retention around his abdomen. Is salt reduction the only way to slow down the retention or are there other things that he can do to help? His drainings are becoming more frequent and he did say he was becoming uncomfortable again and it's only been 10 days since the last hospital trip. Is this a dangerous condition if the drainings are required weekly?
 
Thanks for your help in advance!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/30/2008 1:54 PM (GMT -7)   

Gary, I'm glad that your friend is coming out of denial.  Do you know if he is on a diuretic ("water pill?")  If so, he may also need to limit his fluid intake.  The paracentesis ("draining" or "tapping") is not really dangerous, but anytime an invasive procedure is done, there is are always risks involved, especially chance of infection.  I know there are people here whose mates have been drained more than once a week.

Try to get his meds straightened out for him.  If he takes a lot of pills, a weekly pill container may help.  It has Sun. through Sat. compartments.  I always set mine up on Sun. for the week.  There are also ones with times of day, though those aren't as easy to find.

Take care and keep us posted.

Connie


glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/30/2008 3:41 PM (GMT -7)   

Hey Connie,thanks for the quick reply. I am fairly certain that he does not take a diuretic. One of medical personal mention a some type of tube inserted into the abdomen that he could unclamp and drain himself. I can't recall the actual name but if the condition persists and becomes more frequent I believe he will ask about it. Yeah I was also thinking about the pill container that has the times of day since there is a couple of meds that he takes throughout the day but loses track of taking them on time or forgets altogether.

Take care,

Gary 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/30/2008 8:14 PM (GMT -7)   

Gary, what you are describing sounds like some type of drain.  I had my last one for about 2 weeks.  This was due to fluid in my abdomen after having incisional hernia repair.  Prior to that drain, I had 2 others and they clogged up (with tissue, clotted blood) within a couple of days.  There were two different kinds, and both were able to be emptied by me.  There is an indwelling tube that is stitched in place on the outside, and at the end of the tube is a type of collection device marked in cc's.  I'm thinking that is the type of device that has been mentioned to your friend, depending on how much fluid he has.  They probably have larger collection devices than the ones I had, though.  The patient has to wear loose shirts and be able to clip the tubing onto an article of clothing.  Pants pockets also work for holding the collection device.

Hugs,

Connie


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/30/2008 10:35 PM (GMT -7)   
Hello, ya'll, I am new to the forum. My husband was diagnosed 4 years ago w/ stage 4 cirrhosis (not sure of how many stages there are), and hep c. He did "okay" for a couple of years, and for the last year, wee have been in the hospital at least once a month. His deal is that because of the hep c, he breaks out with vasculitis. His belly is HUGE, but none of the scans or sonograms have yet to show any fluid...although his feet and legs swell. We, too, are watching the salt, and I wanted to make a comment. My husband had a really hard time giving up the salt, because he salts everything. But, I did find a "salt substitute" in the grocery store that seems to have helped with the taste, along w. Mrs. Dash, etc.....I want to thank you for posting the stages of ESLD, and my husband has bounced around a few of these....ammonia level up and down and we push the lactulose like crazy. Encephalopathy gets pretty bad...most recently he was in a rage in the hospital and it was pretty ugly and scary. His MELD score is only an 11 which kind of suprises me. However, he is on "inactive" status on the list because when we went in July to the hepatologist, they also ordered a pulmonary function test which did not go well...so they put him inactive until he got that cleared up. Saw the pulmonary doc and he says lungs are okay, but husband still has a really hard time breathing. This is all very frustrating because he seems to be getting worse, even though his bloodwork does not show it.....Iwish there were some way of knowing how close to the end of this disease. I think he's getting tired of fighting it.....he is in alot of pain in the side and legs and the pain meds do not seem to help much. Sorry for all the rambling, guess I needed to vent....happy to have found this sight......

glwired
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/31/2008 2:39 PM (GMT -7)   
Hey Connie, what you described sounds like what the medical technician was describing. From what you say it sounds like these "drains" are temporary and can be problematic. Do you still have one of these drains or has your fluid buildup come under manageable control? I gathered by reading some of your posts that you've been through alot and yet you have the heart to help others. I'll be praying for you.

Mer, you've come to the right place. I'm new here as well but let me tell ya...there are some really helpful folks out here who know what you're going through. This is all rather new to me and I've learned much from the experience of others here. You can't go wrong by staying in touch with these people!!! Hang in there and keep coming back.

My best to all,
Gary

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/31/2008 8:15 PM (GMT -7)   

Thank you, Gary! I am so very happy to have found this post......I have really felt alone in dealing with all this, and looks like I may learn so much from you guys! You know, when you are going through this, no one around you really understands....so very comforting to know I can have a "sounding board" here.....

Will pray for you that are the actual patients. Watching my husband go through this has really given me new perspective......

 

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