End Stage Liver Disease

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Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/4/2006 5:07 PM (GMT -6)

Hello Everyone

I'm new to this so bear with me. I'm still trying to figure this out. I was searching for something else and came across healingwell.com, seemed to be a very supportive site with chronic health conditions. Glad I stumbled upon it. Here's my story: My husband who is 41 years old has been diagnosed with end stage liver disease due to alcohol abuse. Docs say he may also have alcoholic hepititis, they don't say for sure though. He's been sick since about Summer of 2005 when I noticed he was just not himself, losing weight, always tired, looking kind of yellowish at times. I literally drug him to the doctor in October where they did say he had liver disease but I don't believe they really realized just how bad of shape he really was. He collapsed on December 26, 2005 a devastating evening I will never forget. I almost lost the love of my life. He was rushed to the hospital and immediatley placed in ICU. He vomited about 4 pints of blood. He almost died from losing so much blood. He had to undergo several blood transfusions and medical procedures such as EGD's. He swelled up so bad he wasn't even himself, was confused, jaundicy and couldn't evern do anything for himself. It was the most emotional time I have ever gone through. He was touch and go for about 4-5 days. I prayed so hard to give him one more chance. Remarkably he bounced back after staying in the hospital about 12 days and a very slow recovery at home. Since that hospital stay, he has been in and out two more times. Just recently about 3 weeks ago, he was in about 10 days in ICU for bleeding. He has esophageal and stomach varacies, encelopathy, ascites. The docs in our home town basically gave him no hope and said his only options were a TIPS procedure and liver transplant. They said his life expectancy is not much longer because of his condition. He takes lasix, enulose, aldactone, propranonol and other medication to help with his condition. He also has high hyperportal tension going on when he gets hospitalized for bleeding. We finally went to to other docs out of our hometown with this last hospitalization when is the large facility we have in New Mexico. There is where he was to undergo a TIPS procedure. I understand there can be several complications with that procedure. Has anyone actually undergone that procedure and if so, what was your outcome? What were your complications? How are you currently doing and dealing with it? His GI docs stopped that procedure and said he was not a candidate to undergo it at that time. Only if his bleeding cannot be controlled. At this time, today, he is doing really well. His ammonia levels are down to 20 when they have been sky rocketed in the past 2-3 months, he has been watching is sodium and protein intake, he is scheduled for a EGD banding procedure the 1st friday in April and his mental and physical state seem to be doing better. The docs that he was dealing with gave him far much hope and lifted his spirits as well as mine. He has good and bad days but that to be expected. With so much of this going on with so many people, what are your thoughts? What has been the outcome? From what I've seen, he does really well for a while and then just seems like out of the blue he has some sort of relapse and goes back to square one. Do you guys experience this? Believe me, I've had to learn so much medical terminology real fast and what's happening with my husband. I'm the only one working because he is unable to work, where I work, I'm considered to have high income (if you can consider $47k a lot for a 4 person household) so I cannot qualify for any assistance at all whatsoever. He has put in for his social security but that's even taking a long time, we have no savings, trying to hang onto what we have. It's a very stressful time for me trying to manage it all. Does anyone out there have any ideas? I would great appreciate any input, advice, ideas, etc. Signed....Trying to get through it all

Marg57
Regular Member

Date Joined Dec 2005
Total Posts : 446

Posted 4/4/2006 5:19 PM (GMT -6)

WElcome to the Forum Shel. You will get plenty of advice and support here although I cannot help you other than offer my prayers. I have AIH with cirrhosis but fortunately i was daignosed before it reached end stage. Keep hanging in there! I'm sure someone on the Forum will have the answers to your questions.
Marg.

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/4/2006 5:34 PM (GMT -6)

Thank you for your prayers Marge.

Harley4Fun

New Mexico, USA

Email: shel@lanl.gov

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/4/2006 6:36 PM (GMT -6)

Thanks Valerie. April 7, 2006 will be the third time they band his varacies. I do not know what grade they are. Since all of this, I'm still trying to figure out all the medical terminology and everything that goes along with it. He does take lactulose, lasix, aldectone, postassium, furosemide, lorazepam, propranonol. He is also anemic. I do try to help him with his diet especially protein and sodium intake. From what I read, that really helps when those two are controlled. Thank you for your thoughts, prayers and response. Do you know anything about TIPS procedure? Just curious since they said that may be an option later on down the road.

*Shel*

New Mexico, USA

PN16
Regular Member

Date Joined Oct 2005
Total Posts : 98

Posted 4/4/2006 6:45 PM (GMT -6)

Shel -

Welcome to the forum - this site is very helpful. My father has end-stage liver disease - he was in the hospital with kidney and liver failure last Sept. and was on hospice care - he bounced back and is doing well but he did not have the bleeding at all - I can't be much help except to say that it seems from my experience on this site and with my Dad that everyone seems to have different experiences - and no one can predict one day to the next - liver disease is SOOO unpredictable. Hang in there - sending prayers your way.

Patty

hep93
Forum Moderator

Date Joined Jul 2005
Total Posts : 4171

Posted 4/5/2006 12:21 AM (GMT -6)

Shel, welcome to the forum! You certainly have been hit with a lot at one time. I'm sure the stress is awful. Be sure that you keep records of every appt., procedure, test, hospital admission, etc., and forward this info to the SS Disability office. Get a lawyer if you are turned down, but still be prepared for a wait, and continue to supply info, via the lawyer.

I was diagnosed with hep C in '93 and with liver cancer in May '05. My cancer is inoperable, but I will have chemoembolization on Fri., in an attempt to shrink the tumor and buy me some time. My lower extremities are blown up due to circulation being inhibited by the tumor, which is so large it takes up nearly the entire rt. lobe and has metastasized to the inferior vena cava, a major vessel in the trunk. My midrift and abdomen are also swollen.

I have days where I do nothing but sleep, and a few days where I feel almost well. I can never predict from day to day how I will feel.

Shel, my prayers go out to you and your husband. It sounds like he is doing better than he was at first, so keep doing what you can to keep him stable.

Healing thoughts,
Connie

Post Edited (hep93) : 4/5/2006 10:26:35 AM (GMT-6)

TDT
Regular Member

Date Joined Jan 2006
Total Posts : 402

Posted 4/5/2006 12:35 AM (GMT -6)

Hello Shel,

Welcome to the forum! I am my husband's caretaker (Mark) he has end-stage-liver disease, we are going through the process of a transplant evaluation. My husband also suffers from ascites, encephalopathy, portal hypertension, mal-nutrition. Fortunately, he has not suffered from esophageal varices, thank goodness. He was in a 3 week coma in 2001. He recovered from that and even went back to work. This past summer in 2005, my husband was working in extreme heat, taking tylenol and ibuprofen for muscle aches and pains. He began swelling in the feet and ankles. In Nov. his edema went up to his thighs and was 4+. His stomach started swelling rapidly, he gained approx. 40 lbs. in a month. The doctors kept trying to treat him out of the hospital. He was admitted to the hospital the first part of Dec., with extreme ascites. They did large volume paracentesis, it returned quickly and he ended up having the procedure 5 times from Dec. thru Jan. He still has ascites but it has not required another paracentesis since the end of Jan. His encephalopathy varies, though it seems to be under control with anti-biotics and lactulose. His condition does vary also. He is also on a low sodium diet.

My husbands, hepatologist prefers to stay away from the TIPS procedure, to prevent any damage to the arteries and veins, since he is a transplant candidate. They will do it if necessary. Are they evaluating your husband, for a transplant?

My husband was just approved for SSI & Medicaid, 2 weeks ago. I did the interview for him the first week of January. It took about 3 months. I was also the only one with an income and dropped a day of work to take care of him. I am not sure, how the SSI/disability works, but I do know the encephalopathy was a big determining factor, along with his condition being terminal if he does not get a transplant. For others I have heard it took them longer, up to 2 years.

I do understand how stressful, this is for you!! I also have a young child at home, he is 9 years old. I have been honest with him, just facts. No details. Just keep coming back to the forum, there is a lot of support here.

My Prayers and thoughts are with you and your family!! Good luck Friday!!!!

HUGS

Teresa

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/5/2006 10:11 AM (GMT -6)

Just wanted to say "Thank You" to all of you for your advice, thoughts, and prayers. My thoughts and prayers go out to all of you as well and your families. I am so glad I found this because it gives me great comfort to know I can communicate with people who are going through basically the same things and can understand what me and my family are going through. Thank you for being here. We'll see how things go on Friday 4/7. I'll keep you all posted.

*Shel*

New Mexico, USA

Rachel Z
New Member

Date Joined Jan 2006
Total Posts : 5

Posted 4/5/2006 8:51 PM (GMT -6)

Hi, Shel, Hope your husband would be better and better every day and day. I am hbv positive, i found it six years ago during a body examination. I was so desperated at the time found it, so sad at that time. I know that i am being in very dangerous situation. I must keep fighting with hbv virus in the rest of my lifte time. I had taken Lamivudin for around one year, and then stopped it. Doc said that better not take Lamivudin too long time. As it will enhance the hbv virus mutation. Now I always feel tired, depressed, disappointed. But i just keep one word in my mind " Never say give up!" .

lerie
Veteran Member

Date Joined Nov 2005
Total Posts : 966

Posted 4/5/2006 9:55 PM (GMT -6)

Hi Rachel,Welcome to HW forum. You will find a lot of caring supportive people here. I really like your attitude . One thing we can never do with any type of liver disease is Give up.So glad you found us. Take care. later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.

Valerie

Rachel Z
New Member

Date Joined Jan 2006
Total Posts : 5

Posted 4/5/2006 10:24 PM (GMT -6)

hi, lerie, thank you very much

wheredidigo
Veteran Member

Date Joined Mar 2006
Total Posts : 604

Posted 4/8/2006 8:39 AM (GMT -6)

Shel, one small bit of info concerning Social Security,,if its denied the first time around,,get a lawyer,file an appeal,and contact your senators office. They will have someone on their staff to help push the case through faster and they seem to take an active interest in helping get you the help you need.
trish

Barbara P
Regular Member

Date Joined Feb 2006
Total Posts : 256

Posted 4/8/2006 9:29 AM (GMT -6)

Hi Rachel,

Welcome to the forum. I haven't been posting much the past two weeks as my husband was very ill. But he has bounced back once again and I'm looking forward to interacting with my old and new friends alike.

Hugs,

Barb

LIVE IN THE MOMENT!

Hugs and Prayers

Barb

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/12/2006 3:35 PM (GMT -6)

Hi trish, thanks for the information about the social security. He's still in process of waiting, there has been no decision made yet. Keeping our fingers crossed. Thanks!

*Hugs, Thoughts, and Prayers*

*Shel in New Mexico, USA*

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/12/2006 3:46 PM (GMT -6)

Hello everyone. Just wanted to give a quick update on Robert's procedure that he had on April 7th. His banding procedure for his varices went okay. The procedure was little rough for him this time. Friday he stayed in recovery about 2 1/2 hours to make sure everything was okay. He was a little groggy and not feeling up to much the rest of the day on Friday. By Saturday he was doing better. We went to mass on Palm Sunday and he said he felt really good. But then all of a sudden we noticed that his legs and feet started swelling. He still has some swelling but nothing too bad. Looks likes the swelling is going down a bit.
Thanks everyone for your thoughts! Robert will be going for another banding procedure in 6 weeks.

*Hugs, Thoughts, and Prayers*

*Shel in New Mexico, USA*

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/12/2006 3:47 PM (GMT -6)

*Hugs, Thoughts, and Prayers*

*Shel in New Mexico, USA*

TDT
Regular Member

Date Joined Jan 2006
Total Posts : 402

Posted 4/12/2006 8:33 PM (GMT -6)

Hi Shel, Glad Robert did well with the banding procedure. Swelling is to be expected, it will vary. How many more bandings will he have to have? So far they haven't found any esophageal varices, on Mark. It took Mark a long time to recover from his hospitalizations also. Have the doctors started doing a transplant work-up yet? We have a appointment tomorrow with the hepatologist and then the transplant team next Tuesday. Seems like it takes forever to get listed! My thoughts and Prayers are with you and your family!

Hugs!

Teresa

hep93
Forum Moderator

Date Joined Jul 2005
Total Posts : 4171

Posted 4/13/2006 1:12 AM (GMT -6)

Shel, thanks for updating us on Robert's procedure and his liver disease in general.

Regarding the lower extremity swelling, was he told about or prescribed TEDS hose (anti-thromboembolitic stockings?) They have been given to me when I've been in the hospital, and also prescribed for me. I wasn't wearing them much lately, but noticed during he last hospitalization on the 7th, the swelling went down so much that I am continuing to wear them except at night. They really do help!

Connie

Shel
Regular Member

Date Joined Apr 2006
Total Posts : 117

Posted 4/17/2006 1:07 PM (GMT -6)

Hi Theresa, we don't know how many more bandings he will need to get done. I know he has to go back the third week in May for another banding. That's all I know so far. Robert's doc said that we can go meet with a case coordinator for the transplant for evaluation or something like that. I need to make an appointment to start working on that. There is just so much to check into, it's overwhelming at times.
Thank goodness they haven't found varices on Mark. Hopefully that is a good sign. It's terrible what they have to go through.

Hi Connie, Robert has not been told about the stockings that I'm aware of. That is a good idea, I think I will ask the doc about them the next he has an appointment. Sounds like they work.

Hi Valerie, Robert tries to keep his feet elevated and I'm trusting him that he's watching his sodium. He knows that he has to watch that. I keep reminding him all the time. I was thinking that it could have been the boots he was wearing but I don't know. No swelling now, so that's good.

*Hugs, Thoughts, and Prayers*

*Shel in New Mexico, USA*

LighninSilk
New Member

Date Joined Sep 2008
Total Posts : 7

Posted 9/28/2008 9:35 PM (GMT -6)

Are you's still there.... Ive notice the dates on these post.... I read yours.... Im in the same boat with my grandmother... I just looking for help... advice.. what to expect ... anything ???

autumnrain
Regular Member

Date Joined Dec 2008
Total Posts : 21

Posted 12/9/2008 3:53 AM (GMT -6)

What sort of questions do you have as I have been going through my sisters progressing illness past 10-11 years, so I know quite abit.

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