Cirrhosis diagnosis many questions

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LiverDown
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/20/2007 6:01 PM (GMT -7)   
   Hello everyone, My husband was told he has cirrhosis 2 weeks ago.     He has ascites, but his blood workups have improved since he first went into hospital.   He is an alcoholic.   The biggest thing we have going on right now is ascites, loss of appetite, and weakness.    He is on all the medicines, lactulose, diurectics etc.    I wanted to ask if anyone ever took anti-depressents during this , if they helped.   He started on llexapro , I am hoping it will help.   What time of day does everyone take the lactulose.  I have read alot of sad stories and alot of hopeful stories.    My husband has been a drinker his whole life.   I just hope he gets his appetite back.    He is so uncomfortable with the ascites that he does not want to eat.  They have tapped him twice already.   He seams to be maintaining a little bit.     This is a whole new world learning about cirrhosis.    Not a fun thing to have.    Any advice would be great.                   

apple4u
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/20/2007 6:41 PM (GMT -7)   
Hi Liverdown--I know your story well; my DH has cirrhosis, is an ex-drinker(sober 9 months). He's on the transplant list at Penn in Philly. Has your DH stopped drinking? My DH also has refractory ascites; he's had 3 paracentesis but fluid keeps reaccumulating. Also weak and tired, with NO appetite, and he used to LOVE to eat. He was diagnosed 9 months ago. Are your husband's doctors talking about transplant? My DH doesn't seem to have any need for antidepressants, surprisingly enough, although I think I could use them at times! My DH times both his lactulose and diuretics to avoid embarrassing bathroom stops. Yes, this is a whole new world. If he gets sober, you may find it's a better world depsite his illness. It certainly is for me.

LiverDown
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/21/2007 8:41 AM (GMT -7)   
Thanks for reply, Has your husband been able to work?????   How much weight has he lost????   Yes there has been transplant talked about.    Have you seen any improvement in strength over the months.   I thought the anti depressant could help with his appetite.     My husband has never been a big eater ,  drinking was always top priority.   Five years ago I would not alow him to bring hard liquor in the house, but he still drank wine.   and had shots of tequilla out to lunch every day.   You dont realize how important that appetite is until you dont have one.   It is really a gift for our bodys.                Judy

apple4u
New Member


Date Joined Apr 2007
Total Posts : 7
   Posted 4/22/2007 7:35 PM (GMT -7)   

No, he's retired military/civil service; he couldn't work now anyway. He's lost probably 30 actual pounds but more than that because he has at least 20 pounds of extra fluid. No, he's not getting stronger, and at this point he's not going to until he gets a transplant. Unfortunately, for most people, once they start developing these kinds of symptoms, there is no other cure. Has your husband stopped drinking and how long ago? Most transplant centers require 6 months sobriety and many require documented AA involvement.

Liver disease seems to cause people to lose their appetite, even aside from the discomfort of the ascites. My husband eats VERY little and he used to LOVE food. Now eating is a chore for him; he says nothing tastes good.

The best thing to do now is make sure he has a good hepatologist and that he quits drinking, if he already hasn't.


Nealwayne
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 4/23/2007 7:37 AM (GMT -7)   
Hello Liverdown
I can relate to your husband. I have cirrhosis. I have had it about 3 years. I'm also on a transplant list and taking some of the meds mentioned. A little apetite loss should be expected. One of the things that I have to do in the morning is eat before I take my meds. The easiest way to take the lactulose for me is to mix a little fruit medley Diet V 8 splash with it. Something to be aware of for me was ammonia build up around the brain. Makes you think you have the flu, nausea, confused and not able to comprehend anything hardly. My best advice is atitude is everything. If your husband puts his mind to it that he is not going to give into it without a fight it will help him more than anything else. It is not easy but it is do-able.

billybob
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 4/23/2007 7:11 PM (GMT -7)   
Hi,Judy. My name is Bobby. I am also new to this site. I also have ESLD. I lost 100 pounds from last june to christmas.
I had no appetite, but now my liver is compensating, and I don't need the transplant list now. So, now I have a good appetite and
I am trying to slowly lose 40 more pounds so that if my liver tanks, I can qualify for a transplant. Big greasy meals will not help
someone with liver disease, I learned from hospice while my best friend was dying from it. They said small, colorful meals
would be less likely to overwhelm them. After awhile, I gave her ben and jerry's just to get some calories into her. Sodium has to be watched
of course, as I'm sure the doctors have informed you. Fat can be troublesome as well, but at some point it becomes a real struggle
to get them to eat. I wish you the best. My doctor told me friday that when someone develops fluid in the abdomen, they need to
get evaluated for transplant, because they will have a 50/50 chance of 2 year survival. I hope your husband can get on the list.
Bobby.

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 4/23/2007 9:25 PM (GMT -7)   
HI new ones:) welcome to Healingwell,,,,,,please feel free to read the archived posts,,,,,,,,there is alot of good info on this forum and the people here are wonderful for support and first hand info,,,,,,,,,take care
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


LiverDown
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/24/2007 12:35 PM (GMT -7)   
A BIG THANK YOU TO ALL........ My husband can work out of his office ,  so that is very helpful.    He has not taken the lactulose for 2 days.   He has lost 5 pounds so far.    I am watching the salt. but he also needs calories .   He said his liver spot is actually painful if pressed on.   Probably still inflamed from the drinking.    I have requested all his medical records so we are starting the beginning stages of cirrhosis.    I spoke to a nurse from the American Liver foundation, and she told me that what she has seen over the last 5 years, that drinkers can sometimes improve the most, if they quit.   She said give him six months and even with the ascites he could really improve.   That has been the most hopefull statement so far.    I know the statistics about ascites.   50/50 for living longer than 2 years.  He does get better a little bit each day, we go for a walk every day.   He is uncomfortable still sitting up.    I will write more later.                     Liverdown  

billybob
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 4/24/2007 2:22 PM (GMT -7)   
Every story of improvement gives me new hope. I am on pain management for my liver pain and spleen pain. It can be
just unbelievable. I thought livers didn't hurt, but mine does.Very smart to get copies of EVERY medical record and clinic note.
The doctors make unbelievable assumptions without proof of every symptom. I complained of itching 9 months ago, and
my hepatologist tried to blame it on oxycodone, but I've only been taking oxy for a month. I have the clinic notes from 9 months ago
and when I see him next I will request he amend my medical record. I'm glad you two can go for walks. Enjoy every day,
and what Trish the moderator says is sooo true.God bless you both. Bobby.

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 4/24/2007 11:28 PM (GMT -7)   

Hello to All the new ones here and welcome to HW. I do know what you are all going through!!! My husband is post liver transplant, March 16th, 2007. My husband had refactory ascites, he had several paracentesis, they were taking any where from 10-15 liters off of him weekly, they then did a TIPS, which helped some. He had several bouts of encephalopathy, with comas on a few occasions. He had the appetite loss, weight and muscle loss. He drank high protein Boost for the needed calories and also the protein. The doctor ordered this, because the albumin was low, which means the vessels can't hold the fluid in. It is a nutritional issue!! The protein in boost is easier to digest than the meat proteins and not as toxic. If your husband is having forgetful episodes or confusion at times, I would suggest he not stop taking the lactulose. I do understand the sides to the lactulose all to well, but it has saved my husbands life on quite a few occasions! I would suggest you have your husband evaluated for a transplant, while abstaining from drinking definetly does help the liver heal, cirrhosis can be a very progressive disease and with the ascites the survival outcome is not that promising, some do stabilize, others do not. Better safe than sorry! Itching is a issue in ESLD because the bilirubins are higher. I believe there is something that can be given for that, questran I think not sure about the spelling. My husband was not able to work, he got disability first try. If I can be of anyhelp let me know, I have been through all of this with my husband. I thank the Lord everyday for his Precious gift of life!

Hugs,

Teresa


billybob
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 4/25/2007 12:19 AM (GMT -7)   
Hi, Teresa. I'm Bobby, a 43 year old man with a long history of alcohol abuse, and smoking. I quit smoking
in '03 but kept drinking till last summer. My best friend in the whole world was dying of cirrhosis, and I was
her caretaker. On the July fourth weekend, she was hospitalized for the umpteenth time, and I decided to
stop drinking, as I had started to have severe pain in my liver. My doctor did the complete physical
and also two ultrasounds and a CT scan, all negative. My friend died on August 3rd and I drank heavy for a month,
and got even sicker, my spleen was hurting as well. I finally checked into a detox on sept 15th, and after
a hyda-scan, and another CT scan,and EDG,all negative, had a LAP/CHOLE. Thats when the surgeon found macronodular
cirrhosis. I went to a transplant center in my area, and I am considered well compensated. MELD-9 CP-6.
The thing is this: I have severe pain, right and left upper quadrant. I have portal hypertension, a splenomegally,
encephalopathy stage one to two, and take 45 ml lactulose x3+ rifaximin. I'm still sober but feel as though I
stopped right on the edge of the cliff, and am standing there with my toes hanging over the edge. I have no
energy. It's one in the morning, and I can't sleep. I'll sleep away half of tommorrow. I'm usually very
shaky with the nasty sweet taste in my mouth, but the last two days not so shaky. I have some small
collateral veins , but no large varicies. You've been through this, which means you know a lot. I lost my job
yesterday,I havn't been to work since sept. My long term disability will run out in one year cause I drank.
We're applying for ssdi , but I'm afraid they'll say, "oh no, your not sick enough" I can barely leave the house
because of the lactulose, and if I'm late for a dose, then I take a visit to "liverland" and I don't like it there.
I'm very glad to hear about your husband's new liver. Any comments would be appreciated. I'm scared to
death. I don't want to suffer. Right now ,I hurt and sleep alot, but I'm not really suffering. I just don't want to.
I'm curious how did it start with your husband. thanks, Bobby.

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 4/25/2007 12:47 PM (GMT -7)   

Hi Bobby, My husband was a heavy drinker for several years, he use intravenous drugs back in the 70's. He went into a coma for 3 weeks in 2001, he recovered after that and was living a very normal life until the summer of 2005 (fluid build up and muscle cramps). He was not drinking heavily for quite a few years, he had a couple of beers went he went deer hunting. That was all it took, in November- December 2005 he crashed all at once, the ascites became unbearable, muscle cramps, forgetfulness, confusion, diabetes, lose of muscle mass. The only thing he didn't have going was bleeding varices, varices were minimal, no banding. He came so close to dying it wasn't funny. A local GI doctor just about did him in, he doubled his aldactone to 200mg without checking his labs, he ended up in E.R. with a potassium level of 7.8. I stood very firm and demanded he be sent to a transplant clinic, they transfered him via ambulance to a clinic in Memphis, (another long story). The clinic got him stabilized, and started working him up for transplant in the hospital, unbelievable but his MELD was just 11, the surgeon said he had only 20% liver function at that time. When we got home, about a month later the transplant clinic in Little Rock sent a appointment scheduled with the GI clinic, I called them and they took us in right away, finished working him up for a transplant. Mark had been going to A.A. when he could, he was not able to drive and had so much trouble just walking. We got him through that part and he was accepted for a liver transplant in June, 2006. He was hospitalized over 17 times in about a years time. He went into so many acute encephalopathy episodes, I thought I was going to go crazy. Thats not even counting the weekly visits he had for paracentesis 10-15 liters each time. They finally tried doing a TIPS it helped a little. Then after the TIPS he started having heart problems, mild heart attack, mitral valvle prolapse, and atrial fibrillation. He was listed inactive for about a month, in Feb. to the begining of March. The surgeon called us in for a appointment, listed him active and told us he would get a new liver in March, he was listed around 10 days and we finally got the call, it has been such a blessing, he is doing just wonderful, we have our life back!

I will tell you this site has been very supportive, and I thank God for bringing me here! ESLD can be such a isolating disease, without the support I got here I would have probaly gone off the deep end!

The best advice I can give anyone is to follow the doctors orders, make sure you have a good hepatologist. If appetite is poor, check with your doctor about nutritional supplements. It will help slow down weight loss and muscle loss, and even help with ascites. Mark absolutely hated the lactulose, what he hated more was waking up in the hospital and had no idea what had happened to him. This is why I say not to skip doses of lactulose. It got to where Mark just took it without reminders. If the encephalopathy continues, there is always a possibly of infection, electrolyte imbalance, be persistant about finding the reason for it, ammonia build-up is not always why it happens. Inverted sleep patterns and fatigue is a common problem with ESLD, talk with your doctor about it. Mark was allowed to take Benedryl for it. Something we got tired of hearing during our wait for the Precious gift was, YOUR NOT SICK ENOUGH YET. This was so frustrating for us, considering he was hospitalized every month and sometimes twice a month. Just keep faith and know the Lord does provide when it is time.

With SSD/SSI, if you are listed for a transplant or in the process, you usually get it first try. Encephalopathy also helps you get it. Fatigue also works in your favor. Ascites with paracentesis also helps. What it comes down to is what the doctors have written in your chart. I think the main thing SSD looked at with Mark was the diagnosis and his predicted outcome, his quality of life. If I were you I would get started on it right away, before your year with disability insurance runs out. Good Luck with it, just keep positive thoughts about it

I hope I have helped you, if you have any other questions please feel free to ask. Keep coming back, we are here for you!!!

Teresa

  


billybob
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 4/25/2007 2:11 PM (GMT -7)   
Hi, Teresa. Your post helped a lot. It answers many questions. I know that everybody is different, but at least
I have a better idea of what a good out come looks like. My best friend continued to drink, and I can't really blame her. She had no family to rely on, and I did get her evaluated for transplant, but the transplant social worker
said without social support , she wouldn't be considered, and they would have needed to use a feeding tube,
as she was in awful shape. As soon as the social worker told my wife and I this, I asked them to stop all
aggressive treatment, and get her to a hospice. She went to heaven 6 days later. As for me, I need to show your
letter to my wife, and then get on with with this wild ride called LIFE. I don't mind taking lactulose, and
compared to your husband, I'm not very sick. I feel like I was hit by a truck, but hey, I drank 15 beers a day
for the last ten years. I don't know what I was thinking.
thanks, Bobby
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