cirrhosis of the liver

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tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/2/2012 11:25 AM (GMT -6)   
I have just found out that my husband has that cirrhosis of the liver. i called 911 @ 2a on 5-28-12 due to him throwing up blood. By the time he got there he had lost 3/4 of his blood. They airlifted him to las vegas where hes now been on life support for 6 days now. The hardest part is not knowing wth is goin on. His ammonia level is pretty high & they r trying to bring it down w some lactulose. Its so hard to wait for them to tell me something.

Post Edited By Moderator (hep93) : 6/2/2012 12:28:21 PM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3329
   Posted 6/2/2012 11:53 AM (GMT -6)   
Hi TL,

Welcome to the forum. We are a group of patients and caregivers of those affected by liver disease.

There are some good articles and suggested web sites at the top of the forum that have a lot of information about liver disease. You need to learn everything you can.

One of the most serious side effects of liver disease is uncontrolled bleeding. If they get this under control by banding the bleeding varices, he is not out of the woods. It means he likely has portal hypertension. The liver is not working well and the blood in the portal vein can back up causing a lot of pressure. Some have bleeding in the stomach as well.

There are good meds for this and with proper care, he may be okay for a while. Unfortunately, from what I have read, those with serious bleeds may have it happen again. They will want to scope him often with an endoscope to peek down his esophagus and check things out.

Good he is in Las Vegas at a major center. His condition is serious.

The high ammonia is quite typical of advanced liver disease and presents as confusion, aggression, sometimes causes the patient to sleep all the time. If he slips onto a coma, or you cannot rouse him from time to time (to drink and to take some more lactulose) it is time to call 911.
 
My partner started to go down hill in 2009. It was a long slide with all the symptoms...his bleeding was in his small bowel and they had to fix that up a few times, he had high ammonia and the resulting hepatic encephalopathy (HE), he had swollen legs and ankles, but not the swollen belly like many have. He grew girly breasts that were tender. And and and.

His biggest hurdle to over come was that the was an active alcoholic and needed to quit drinking. He didn't do that for a long long time, but finally got in a program and has been sober a year and a half now. He is post transplant and a liver cancer survivor (they took out that tumor with his decompensated liver at transplant in May 2011).

Could you tell us a little about the history of his liver disease. Does he have hemachromatosis (too much iron), Hep C, alcoholic cirrhosis, fatty liver, auto immune hepatitis? There are lots of ways a liver can become decompensated.

Come here often, ask questions. We have many members with different experiences. We'll support you both through this....IF he has caught this in time. Some of our stories don't have happily every after endings. And mostly for that reason, I'm sorry you have had to find us. But find us you did...welcome aboard. It is going to be a bumpy ride.

Hugs,
Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

Post Edited (MamaLama) : 6/2/2012 1:02:50 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2012 12:37 PM (GMT -6)   
Hi, Tl, and welcome to the forum. Your husband is a very sick man and certainly was near death with such a bleed. Did he show other symptoms of liver disease prior to this happening? Extreme fatigue, swelling of the abdomen or lower extremities, etc.?

I'm sure that your husband has been given transfusions. It's worrisome that he lost so much blood. ML/Carol, has given you good information. I hope that your husband recovers from this. He needs to not drink alcohol at all. Hopefully, he will qualify for a liver transplant. Yes, it's that serious.

Please keep us updated on his condition and also how you are doing. There is a Caregivers thread on the first page of this site, where you can get support from others in your position.

P.S. I corrected your spelling of cirrhosis and Lactulose.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3329
   Posted 6/2/2012 2:18 PM (GMT -6)   
Here is a suggestion.
 
On the  blue bar abouve the list of topice. The fourth choice is SEARCH. Put "varices" in the box and see old posts on this topic, or any specific topic.
 
I tried it and there is a lot of information over time.
 
Best to post any questions this reading brings up in your own recent post though, sometimes posting after an old post gets fewer replies.
 
Thinking about you this afternoon and hoping things are settling down in Vegas!
 
Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/2/2012 5:02 PM (GMT -6)   
Yes they gave him 9 bags of blood on mon-tues & 2 bags of plasma. the swelling in his legs was so bad that he had water leaking out of a sore @ the bottom of his leg. his scrotum also swelled so bad i thought it was gonna pop. hes got the ascites of the belly and they hv drained 5 liters of fluid as of tues. he seemed so swollen up again wen i seen him on wed. they r pushing 180 mg of lasix

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3329
   Posted 6/2/2012 5:32 PM (GMT -6)   
Oh TL, you must be so worried. Is he awake and aware? Can he talk to you?
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/2/2012 7:12 PM (GMT -6)   
No hes been on life support for 6 days today. they r waiting for him to wake up calm & able to follow commands. so far yesterday & today he woke up agressive from ammonia levels. i am just wondering is this it? how long does a person make it? I am very worried. hes 51 & im 39. way too young. Tammy

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 2984
   Posted 6/2/2012 7:53 PM (GMT -6)   
There's no way to tell how things are going to turn out. Many of the people here have been at deaths door and are doing well. And others didn't make it. I'm in good shape after a transplant, but things could go south tomorrow. I live for the day, that's all you can do. Be well.
No good deed goes unpunished...

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3329
   Posted 6/2/2012 7:54 PM (GMT -6)   
Tammy,

Everyone is different. Have they suggested he won't make it? Is he intubated? Is he making urine?

Some spouses who have posted have seen their loved ones near death and then they return to the world of the living, get their transplant and return to a pretty normal life.

Have you contacted any family members who would need to say goodbye if this is, indeed, his time? Have you called in support for yourself? Do you have his medical directive, his DNR, do you know what he wants if his condition is not reversible? Do you know in your heart what you have to do if it gets to that point?

I had decided not to call 911 the next time, and then Mike got his transplant and he is doing well. That is not always the case.

My thoughts are prayers will be with you.

Best,
Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 1570
   Posted 6/2/2012 9:37 PM (GMT -6)   
Tammy , I myself have Cirrohsis and suffered through alot of the complications it brings . I haven't as yet needed a transplant but had TIPS surgery to releave the abdominal ascites problem , I was up to a average of 16 liters of fluid a week before they approved the surgery .
I was given the 3 month survivability prognosis a few years back and never thought I would see a normal healthy day ever again . I'm happy to report that I am doing well today , No pain , No swelling , No daily trips to E.R or Doc's office . I keep up with doctor appointments monthly and see my Hepatologist once a year unless something goes outta whack .
It's likely my health will decline again at some point and a transplant will be needed but worrying about the future will get you nothing but crazy . So look no further than the next hour with this situation . Things can change rapidly in either direction . Just be prepared and educate yourself in this forum about the disease and what to expect as a caregiver . I wish you and your's the best .


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2153
   Posted 6/3/2012 1:34 AM (GMT -6)   
One moment at a time Tammy. Get throught this episode first then ... day to day... take a deep breath.. come here and tell us about it... we're here.. I was here when my Mike lay in the ICU... many of us have walked this journey... we're here... and we care... prayers are with you both.. sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom

tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/3/2012 7:32 AM (GMT -6)   
well we have no insurance. the hospital is gettin some disability goin. how long does that take to get? ill b on my way in a couple hrs wen i get off wk.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3329
   Posted 6/3/2012 7:51 AM (GMT -6)   
Sometimes the hospital social workers can get these things through.

YOu need to check out Social Security Disability and Medicaid. If he has the right lab results, the Disability can go through pretty quickly IF he has enough recent work quarters. My Mike was ill a long time and could not work, but not according to their lab chart for eligibility. then when he did qualify on their chart, he didn't have recent work quarters.

If you get SS Disabilty, Medicare cuts in after 2 years. So if he holds on, that could help.

Medicaid depends on family income. So with you working, that might not work. Mike and I are not married, so he qualifies by himself. and that is a big relief as he got the transplant, etc on Medicaid.

It is good that you are going over the business side of this...make sure your will and house and kids are organized properly also.

Let us know how he is today.

Hugs,

Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

Post Edited (MamaLama) : 6/3/2012 8:00:41 AM (GMT-6)


Angie1953
Veteran Member


Date Joined Jul 2011
Total Posts : 933
   Posted 6/3/2012 7:57 AM (GMT -6)   
Tammy,
  Welcome to the forum, so sorry your guy is so so ill. My hubby was given 3 months to live 15 months ago.   His quality of life is not what we had hoped, and he lives in the nursing home, but somedays he is pretty good, others not.
 
  We did not have insurance either and applied for disabilty.  I just took him for whatever treatment/Dr appointment he needed and after the care told them we had applied for disability and Medicaid and would they send me a bill and I will keep them informed of the process (which I did). Every month I wrote each creditor a note and gave them the status of disability or medicaid and sent $5.00 on the bill.  No one gave me a hard time.  When he got disablity I wrote and sent all the creditors a copy of the letter and asked them to submit the bills to disability.  I submitted them also.  This worked for us, don't know if it will work for everywhere.  (In Vegas it may be much tougher to do this, as we live in a small town.) 
 
All care providers seemed to know that with ESLFailure he would be okayed for disability and were ok with waiting. (Process took about 3 months for disability and 5 for medicaid).  We were very lucky...but sometimes it was hard to take him to Dr. with no money and when it came time to pay, just explain the above.  Dr. was very helpful and caring. 
 
  Come here often, we care, and know what you are going through.  It's hard for others to understand, especially the HE from the high ammonia levels.  Last winter, I don't know what I would have done without this forum to vent to and ask questions.  A sanity saver for the care givers.
Angie1953
 
 

tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/3/2012 8:07 AM (GMT -6)   
Thank u guys really. its amazing that i even found this site but am very grateful for it. what state r u in angie? hes in vegas but we live in az

cable poodle
Regular Member


Date Joined May 2011
Total Posts : 491
   Posted 6/3/2012 12:57 PM (GMT -6)   
Is your husband a Veteran? If he is, apply for medical thru the VA .. and find the closest VA hospital to get him into.

Good luck
Successful transplant Feb. 8,2012 at Pittsburgh VA Medical Center

tlasky
New Member


Date Joined Oct 2011
Total Posts : 8
   Posted 6/3/2012 10:17 PM (GMT -6)   
no he is not a vet.  i have got great news though.  i walked in & called his name & BLING  u c his eyes open!  oh gosh i was so EXCITED!!!  then he started following commands & being calm.  they took him off life support @ 4 pm!  YAY!!!  I got to talk to him & tell him that i loved him & thank u Jesus!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2012 11:35 PM (GMT -6)   
TERRIFIC news, Tl! That's the kind of great news we love to hear! Hopefully, he will stabilize.

Big hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2153
   Posted 6/4/2012 2:51 AM (GMT -6)   
very good news... I will continue to pray.. Sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Angie1953
Veteran Member


Date Joined Jul 2011
Total Posts : 933
   Posted 6/4/2012 6:34 AM (GMT -6)   
Excellent news Tammy. We live in Nebraska after living in AZ for 23 years (well, I did...he traveled everywhere for work).
Hope this is a good day for the two of you.

Here's a jewel of info a Hospice Nurse friend gave me when we first found out about the ESLD "There will be good days and days, try not to make the good ones into bad ones. Just enjoy the good days"

Angie1953

bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 6/4/2012 11:54 AM (GMT -6)   
Mynameismary, there it is in a nutshell. ESLD is a crazy unpredictable disease. How true!
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