hep c ...end stage liver disease

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blonde504
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Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 7:52 AM (GMT -6)   
Hi
I came across this forum ...while researching ....my husband has hepatitis c and is in end stage of liver disease ......we have been battling this alot the past year....we have been admitted to hospital so many times I've lost count. He is diabetic also. We are at hospital as we speak. He slept alot yesterday and woke up confused And not being able to walk

His ammonia level is 180. And his bilirubin was 6.2
gosh this can take a told on the sick person and their care giver/ love ones. I know I'm not alone but it sure feels like it :(
A

MamaLama
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Date Joined Oct 2010
Total Posts : 3301
   Posted 8/12/2011 8:10 AM (GMT -6)   
Dear A,

Welcome to HW forum on Hepatitis. One of the moderators will be along soon to welcome you. There is some good information at the top of this forum, general education that might be helpful. Poke around the site, you can search for older posts, and there are a lot of them, about a specific topic.

If you search on my posts, MamaLama, you will see that my husband is 3 months post transplant after a horrible year with the final ESLD symptoms. There are several caregivers and patients themselves posting about their symptoms and status. There is also a thread especially for caregivers who are having their own set of issues, working with their grummpy, ill patient-husbands-partners-kids-parents. Feel free to post regularly and to let us know how you both are doing.

Your husbands labs are quite high, and I would suspect he is/has been very ill. My hubby had a MELD of 24 when he arrived at the transplant center for evaluation in October 2010 after a 5 day hospitalization with high scores in every test! His urine was coke colored, he was having intermittent rectal bleeding, his legs were very badly swollen, he was confusted (and grumpy) and sleeping all the time. He often threw up and was, in general, a mess.

The docs told him he'd be gone in 3 months if he didn't stop drinking alcohol. That was the key. Once he got on their regime of meds to reduce ammonia level, improve his edema/ascites, regulate his blood pressure and sugar, etc etc he was actually feeling better for quite a while. The lactulose and xifaxan for hepatic encephalopathy were a life saver in my opinion. But the #1 item that produced improvement was when he realized he could no longer drink AT ALL. He quit cold turkey, went to AA 4-6 times a week. And earned himself a place in a pre-transplant program. They told him that if he lived thorugh 6 months sobriety, passed their other criteria (no large tumors, good cardiac health, etc.) they would find him a liver -- and they did.

It has a been a miracle. I thank God every day that we have him BACK almost normal. Almost. He still takes a lot of meds and goes for a lot of tests.

Others will post their stories. Some caregivers here have had different expereinces...their loved ones were too ill to come back and over the course of time, they have passed. It is sad. My Mike said in April he was prepared either way...but he could not go on much longer...and for us it has been a positive outcome. Not so much for some others.

You will get a lot of support and information here.

MamaLama aka Carol

blonde504
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Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 8:35 AM (GMT -6)   
Thanks mama lama
.....he has progressively gotten worst and at the point he wants to give up. I found him in a pool of blood this April in our bathroom ..I quickly called 911 and doctors told me he would not survive ...I wasn't taking That as a options ...I transfer him to the hospital That will eventually do the transplant ...they quickly did the tips procedure and about a month later he was home ...we started the work up because his meld was at 15 .since then his labs have been all over the place.a month in a half ago his meld score was 18 ..then back down to 17 a few weeks later. We started workup but had to stop so they could admit him because his red blood count and platelets are always low
So We had to stop and reschedule workup then his appt came close And his left leg was swollen three timed the normal size. He had staph infection from a IV port so the did surgery and he is still on wound vac. They kept him long enough to miss his work up appt so I rescheduled once again .....we were home four days and he was having trouble breathing by time ems came his oxygen level was 50% so he was in icu and hospital for week and a half ...and missed Work up again. We were home called and reschedule Work up for next and this happened .....with ammonia levels
...so we are being admitted and will probably miss appt
I asked if we could do it inpatient but our insurance wont approve it. He is holding fluid. Like always on lasix and they had to hold aldtone because of his kidney functions. He is on insulin.beta blocker for esp varraisse. Had tip procedure. He is supposed to take lacolose but almost always refuses to take It. So worried and doing this alone and its tough
Happy to hear Your outcome was positive ........

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 8:38 AM (GMT -6)   
When I take his labs his mel's score Is at 22

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1705
   Posted 8/12/2011 9:37 AM (GMT -6)   
A,
Welcome to Healing Well. I am sorry that your husband is so sick. This is a good forum with lots of caring people that will help you not to feel so alone.
One of the moderators should be along soon to welcome you too.
My understanding is that taking the lactulose is very, very important to control the HE. Even with all its unpleasant side effects.
Please post often, and take care.
Emma

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 9:46 AM (GMT -6)   
Thanks Emma, I tried telling him That ....they wanted to give it to them And he refused to take it. So they came in to get it in with a tube . I got sern with him and said take it for me the easy way .....or they will do it the hard way. Its nice to have people who can truly relate what we are going through and hopefully I can help some one in the process also ;)

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 9:51 AM (GMT -6)   
Oh btw he decided to take It the easy way .......he's very much not himself lately ..he's so easy going but has gotten very difficult but I read That's part of a side effect.
Oh and actually the " A" at the bottom of last post was a accident on mobile its actually. "Elle

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 10:29 AM (GMT -6)   
Emma , The tips hasn't seemed to help ..but I'm not 100% sure of that ..but back in April the doctors didn't think he would survive another day ..then he has tips ans he's here 3 months later so I guess I about take That back. My husband hasn't really ever been a drinker but he has has hep c for a very long time and he Is only 39 very young ;( Thanks for all your help.it is greatly appreciated
....elle
Blonde504 aka Elle

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 11:01 AM (GMT -6)   
Well That's Good news his bili went down
He still sufferes with ascite and fluid again at one point he was holding 65 pounds of water fluid this was after tips and HE is progressively getting worsti will look at older post. .thanks
Blonde504 aka Elle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2011 11:44 AM (GMT -6)   
Hello, and welcome to the forum Blonde504/Elle. I am sorry that your husband is so ill. Hep C is such a nasty disease. I was diagnosed with it in '93, though I know I contracted it in the late 60s. I basically went untreated and did well for years, except for fatigue. Suddenly, in '05, a hepatocellular carcinoma (HCC) of 12 cm x 11.5 cm showed up on annual ultrasound. It had also metastasized to the inferior vena cava (large vessel that comes off the liver.) I went to Mayo and they literally saved my life with treatment and a rt. lobectomy. For 4 yrs., I did fine....then, the end of March this year, it was found that I had a new HCC. I was evaluated for transplant over a 6-week period (look for my thread entitled My Transplant Evaluation.) The tumor was growing rapidly, so on July 18th I had chemoembolization. I have been listed for a new liver and now am just waiting (see new thread, My Journey On The Waiting List.) In 3 mos., if I haven't yet been transplanted, they will scan me to determine the size of the tumor. If it has grown much, I'll again have chemoembolization.

Throughout all of this, my liver has not decompensated. My enzymes are always elevated, but my bili is normal. I have no varices and minimal ascites, for which I take Lasix and Aldactone twice a week (reduced from daily and a higher dosage at one point.) Edema and ascites, plus increasing fatigue and need for sleep, are the only side effects I've had thus far (knock wood.) My MELD (which I calculated myself and Mayo got the same number) was only 7 prior to the HCC, which increased my MELD to 23.

I'm telling you all this to let you know that everyone's story varies slightly and that there is always hope. Back in '05, after the original tumor was found at Shands, they told me they were sorry, but there was nothing they could do for me. I refused to accept that death sentence and went to Mayo. And I am much older than your husband. Six years later, I am still here.

I'm assuming that your husband had diabetes prior to his liver failing. That presents special problems, but it's treatable. It's also possible that the TIPS has increased his hepatic encephalopathy (HE.) I am really sorry that he has been in the hospital so much that the evaluation for transplant has not yet taken place. It's really a shame that he can't have it started while he is in the hospital. I think I'd fight insurance on that.

The other members who posted gave you very good suggestions about using this site. Please do be sure to check out the Caregivers thread, as you will get much support there.

Again, welcome, and I'm glad that you found us.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 12:06 PM (GMT -6)   
Thanks Connie ....we are in hospital now and rest of work up is next Wed And Friday ...gastro doc said if it happens again we will see if there are any loop holes around doing it. Inpatient making it look like it was done out patient. I hope all goes well with you ...Thanks for sharing your story.
Blonde504 aka Elle

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2011 1:22 PM (GMT -6)   

Best of luck to you and your hubby, Elle.  Please do keep us updated.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 1559
   Posted 8/12/2011 7:45 PM (GMT -6)   
When was a flow check of the TIPS last done ? He will need to have a sonagram done every so often to check if it's working properly . There is a procedure they do to clear the shunt of any obstructions . If the shunt was installed a millimeter out of the correct position it can also cause blockage , I have heard of a few cases where the TIPS doesn't work but most are very successful . Diet , exercise , medications / vitamins are a must . Xifaxan and lactulose has become a regular part of my life . Lactulose is only taken as needed now but there are times when I still use it .

A. Ziffle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2011 8:19 PM (GMT -6)   

Good input, Mr. Ziffle!  :-)

Hugs,

Connie


hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/12/2011 9:11 PM (GMT -6)   
Well he had tips done in April and they have check it 3 times looks like its working. Properly ..I've ask the doc that on several occasion ..I try to stay on top of things the best I can and am constantly researching the disease. He is not currently on xifaxan but will surely ask doctors about if he can start taking it. I try to keep up with his levels and our hospital has web site you can view labs And test ....the problem I have run into is when done as inpatient they are not there. I ask nurse for levels of inr. Creatine. Bilingual ..red blood count ....platelets and what ever else seems high or low at the time they wont give u copies .I was told I have to go to medical records. I did ask about his liver enzymes and they were all in 400 range and I research ans seem up to 40. Is on normal range ..but how bad is it at the 400 range ...I didn't write them down So that's what I remember glanceing at. Does anyone know? Thanks for your help Mr ziffle it is greatly appreciated.
Blonde504 aka Elle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2011 10:55 PM (GMT -6)   
"Bilingual"  
 
Did you mean bilirubin?
 
I would say that LFTs in the 400 range are pretty high, though I've seen higher.  Even with liver cancer, mine have never been higher than 84.  But there's a big difference between compensated and decompensated liver disease.
 
Regarding the labs, you can call Medical Records, ask that a release form be sent to him, have him sign it and you can fill out what it is you want, then mail it back to them.  They will send the reports, though they are likely to charge $1.00 a page.  I just did this with a report from my TP evaluation.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 1559
   Posted 8/13/2011 6:32 AM (GMT -6)   
Sometimes when I remain on my feet for extended periods of time my legs/feet retain water , I was told by my Hepatologist that they may have to put me on a mild dosage of Aldactone , But they prefer I curb my exercise instead . The trade off for taking some medications can out weigh the benefit in the long term ( Further damaging liver , kidneys and etc. ) .
I had fluid build up albeit minimum for a couple months after the surgery and once had a Paracentesis done after it . My doctors only allowed 3 liters to be removed during paracentesis and stopped all diuretics after that . Eventually the shunt began working on it's own . Point being , If your body has grown used to outside sources ( diuretics/paracentesis ) to do what the body can do itself it forgets how to . If you don't use it you lose it . It may take awhile for the body to get used to it's new modification .


A. Ziffle

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/13/2011 8:05 AM (GMT -6)   
Yes I did mean bilirubin ...That's my spell check ...lol
Blonde504 aka Elle

blonde504
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Date Joined Aug 2011
Total Posts : 449
   Posted 8/14/2011 6:53 AM (GMT -6)   
They started him.On xiifaxan yesterday and doctors seemed more concerned how he is doing at this point his labs today were worst today And the confusion is still really bad but they are giving him lacolose for 24 hours hopefully it will start helping soon. Hope every had. A good weekend
Blonde504 aka Elle

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 8/14/2011 1:52 PM (GMT -6)   

Blonde, I hope that the Xifaxan helps him...also the Lactulose.  Are they giving the Lactulose to him continuously over 24 hrs. or just for 24 hours in doses.  I don't quite get why they're not giving it to him as a regular med if his confusion has intensified (though that's a possible side effect of the TIPS.)

Hugs,

Connie


hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/14/2011 6:55 PM (GMT -6)   
Well he is getting every so many hours around the clock now. In the past the doctors have told him if he has so many bmovements That he could hold it. But he does not take it at all at home but I think this was a scare to him ....we saw liver doc today and she seems very concern ..his stomach is swollen and thinks their is an infection ..started him on IV drip she said ( liver doc ) she was gonna fight to do rest of work up in patient with our insurance company because he needs to be listed now. This worries me Howe bad is he ...they never seem to tell how bad off they really are. They confirm all his lab as they are high and seem to read true by how his liver look in ultrasound. He has bruise all over ...his muscles are detierating and generally he looks bad. How does this happen so fast. Its so sad to watch the one you love. Become someone you do not know anymore.and wat hing my children deal with this and are scared ...they now have come to the point with him going in the hospital is normal ...it worries me how the outcome will affect them Well on a positive note after I left he called and said they did a TB test and were saving his urine on ice I guess for the 24 hour collection of urine ..which were things That we had left to do on work up. Once he is stable they send him home ..when he truely isn't ready he barely could walk and got stuck on potty and had to crawl out of bathroom barely made it to sofa where he got stuck it took me and my two healthy strong brothers to get him up and to bed where he after a while got stuck and I had to call 911...that Is this hospital stay and I'm scared that I can't take care of him the way he news to be ...it would break his heart if he knew I felt this was I try to stay strong and keep it together for the both of us but I don't know physically and mentally I can take
..I guess it doesn't help all his family lives in Michigan and we live in new Orleans so I basically do it by myself luckily my parents help me with the kids so I can take care of him with appt and er
.hospital stays Well I know that was a rambling mess but it feels good to get it off my chest ...
Blonde504 aka Elle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/14/2011 7:23 PM (GMT -6)   
Hey, Elle. BEFORE he is discharged, ask them to order him a walker and a bedside commode with arms. It comes with a bucket that can be emptied and when he gets better, it goes right over the existing toilet (removing the bucket.) Because it's higher and has arms, it's much easier to use than the regular toilet. The walker would also assist him in getting up and down from the bed, sofa, etc. These things are durable medical equipment, which his insurance should pay for if they are prescribed. That's the trick...get them prescribed and sent to the house or hospital BEFORE he's discharged. Should insurance balk, you can see if there's a loan closet in your town for this stuff, or a medical supply company you could rent from. I still use my over-the-toilet chair since my original hip replacements in '02 and '03. I also have a shower chair, so I don't have to stand and risk falling while in the shower. Any kind of help like this is great! You might also ask about visiting nurses when he gets home. The doctor could prescribe that, too, and insurance would pay.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/14/2011 7:41 PM (GMT -6)   
My mom actually gave me a travel bed side commode and a walker from.my grandma but I guess since he is young and a man ..he bucks me on these issue and doesn't want to use them maybe I Just have to put my foot down with that and lacolose
...like I saw in someone post make it like business as if It was his nurse ...home health does come out to change his dressing for his wound vac 3 times a week ....Thanks for the info Connie
Blonde504 aka Elle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/14/2011 11:23 PM (GMT -6)   
The male ego often seems to get in the way of common sense concerning health issues. Frustrating! rolleyes

Hugs,
Connie
hep93
Forum moderator - Hepatitis


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

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 8/15/2011 4:55 PM (GMT -6)   
They started finishing the work up inpatient so that's good news
Blonde504 aka Elle
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