End stage liver disease... what should we expect?

New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/6/2008 3:42 PM (GMT -6)   
My 58 year old husband was diagnosed with Hep C back in 2002. 
He immediately went on the first of his two programs "The Pegasys" program ... much misery and weight loss and skin disruption and weakness and much much heartache.  He completed the course ( weekly injections into the thigh) and was told he was Hep C free.
We were thrilled! 
Until it came back immediately on the next round of blood work.
We took 9 months "off" - he grew to be healty again and we changed doctors.  We then started another program (Can't remember the name, but it was interfuron and ribavirin)  same kind of deal, just basically a different manufacturer. Also daily injections into the thight as opposed to weekly.   He took the program as long as he could. It almost killed him. His platelets basicially disappeared,he was so weak he couldn't walk eat or think.  He wound up hospitalized twice.  The final time the Dr told him "this is as far as I can let you go"  any further into this program and you will die.  So he quit.  He was not Hep C free, either.
For 3 years he decided to live out his life as normal as he could .  He gained weight, looked good, grew hair (the programsmake u lose your hair).  We had a nice life.  (With our little heads deeply stuck in the sand,pretending all was well)
Fastforward to Xmas of 2007. My husband's weight is up to the point where he can no longer wear clothing or shoes.  He is living in a sweat suit and slippers.  His abdomen is extended to the point of him looking like a pumpkin with a head on top.  His feet, ankles and legs are huge.
We go back to the Dr.  Since then my husband has been in the hospital 5 times (this is the beginning of July) and he is going back in tomorrow. 
They "tap" his abdomen to get rid of the accumulated fluids.  They give him albumin by the bag full, the give him potassium and vitamin K and lactulose and lasix and spirolacton and zinc sulfate, nexium, xixafan (?) and many many more and they 'put a bandaid on him" and then release him.  Telling him that's all they can do for him for now.
 
YES - He IS on the transplant list.  But our problem is that his blood work has still not gone to the low point it should be in order for him to get his donated liver.
 
I've seen his symptons escalate and escalate and escalate (Right now he has fluid in his lungs and he 'rattles' when he breathes.  He also sleeps 20 hours a day.  When he sleeps he experiences involuntary "gibberish"... he YELLS out and he talks and he argues and he YELLS some more.   None of this he is aware of .   We are obviously not sleeping together any longer.  I need my sleep to be able to care for him.  He is confused.  He scares me with some of the DUMB things he'll do with household things.   (Knives in toasters come to mind immediately)  And this poor guy was once a terrific defense attorney.  He was brilliant.  Now he is a vegetable.
He doctors made his stop work in January (Ouch!) and he had to stop driving also (ouch!).
 
OK, long long story here.  But the question is,  the Dr are excellent and very busy and business like.  As you all know. 
WE WANT TO KNOW WHAT TO EXPECT NEXT?   FROM THE REAL PEOPLE OUT THERE!  
Suppose his blood is NEVER to the point of transplant?  Is he going to die from all the other symptoms? 
I am really starting to take a look at MY life - the life of the caregiver - what happens to the caregiver when the patient dies??????
What could he die from?  What should I be watching for?
 
Help help help from people who have been in my position.......
 
God Bless You ALL!!!

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/6/2008 4:36 PM (GMT -6)   
Welcome to the forum La Bunna, My heart aches for you and your family. This disease is such a horrible disease. My husband also suffers with hep C and cirrhosis. Right now his main problems are ascites and encephalopathy. It is so hard watching someone you love slip away before your eyes. Cirrhosis affects each person differently so I am not sure anyone can tell you what to expect. There are a lot of possibilities but it doesn't necessarily mean that they will happen in every case. I just try to educate myself as much as possible so that I can be prepared just in case. It sounds like your husband is much sickier than mine at this time. I am so sorry that you have to go through this. I know that it is very frustrating waiting to move up the transplant list. But believe it or not, being listed is a big accomplishment. There are many people that don't qualify. Just keep praying and have faith that he will get his transplant. I will also pray for you and your family. There is a lot of helpful information on this site. If you have time to read some of the older posts. I have also researched cirrhosis on-line and found a lot of useful information.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/6/2008 5:38 PM (GMT -6)   

Welcome, La Bunna.  I am a patient with hep C, mild cirrhosis, and living on one lobe of the liver, the other being removed due to primary liver cancer from hep C.

If you'll skip to the second page, there is a thread (second from bottom) about the stages of liver disease (started by our wonderful nurse participant here, Shelly) that you might find very helpful.  I think if you read some of the older posts here, you might find the answers you are seeking.  People progress with this disease at different rates.  Not everyone is the same, so it's difficult to say what you might be facing in the future.  However, you can get a general idea of symptoms, etc.

This is also a good place to "vent."  So keep coming back!

Hugs,

Connie


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/6/2008 8:10 PM (GMT -6)   
Hello La Bunna,

Welcome to the forum. The thread that Connie is talking about~ I bumped to the top so it would be easy for you to find.
I am sorry that your husband is having such a hard time, but it is a good thing to educate yourself about what could happen. Ask away, about anything. Someone here might be able to help you. I'm still learning myself.
I am my husband's caregiver. He is 56 yo. I have the same thoughts as you, about what happens to the one left here by themselves. It's not something we want to think about, but it is only smart to prepare for yourself. If you don't, it will be a lot harder on you. I still don't have everything set up. There is always so much other stuff to take care of just day to day. I really need to write this on my calendar and work in time to do this. Thanks for reminding me.

Take care,
Carol
 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/6/2008 9:58 PM (GMT -6)   

Hi La Bunna  Welcome to the forum.  I know exactly how your life is right now.  My husband is 59 and we started this horrible journey 15 months ago.  Please don't give up.  I know its so hard but if he is on the list there is always hope.  They used to drain my husband as much as twice a week.  He has lost his muscle mass totally.  From March 20 until Feb 08 he was in the hospital as much as he was home.  Then in Feb 08 he went three months with no hospital stay.  It was like the best vacation we have ever had.  We had started building our second home when he got sick.  I ended up doing most of it from the hospital. So we got to go to the beach for two weeks.  He has been hospitalized for everything under the sun.  At first it was electrolyte problems then dehydration then Amonia, then internal bleeding, then vomiting and dehydration and so on and so on.  I'm sure you are familiar with it all.  I too think What am I'm going to Do if I lose him.  I just have to drive that out of my mind.  Our life basically sucks but I keep telling myslef I still have him.  Is your husband on diuretics?  They keep adjusting Jerry's because of the fluid.  LIke I said we had three good months.  My husband was a workaholic and can barley walk these days.  Can no longer drive even though he will try every now an then.  He's so used to being productive so it makes it hard.  We're getting ready to put a recliner and maybe a small TV in his office so he can take naps.  He just insists on going to work.  I also know what you mean about sleeping.  I am worthless without sleep.  I finally got  really involved so I could fight for him.  You should try that it makes you feel like you are helping.  My husbands MELD score has been at 17 for quite some time.  His son is now persueing the live doner transplant because we are all so scared his body won't hold up much longer.  Its amazing how much abuse the body can take.  Read through all the posts to get educated.  It really does help.  Just keep a stiff upper lip and stay in touch with this forum.  Its a big help. 

JoAnn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/6/2008 10:38 PM (GMT -6)   
Hello La Bunna and welcome to HealingWell,

Well I can tell you about my life since my husband died. He made the list but a little too late. So if you want to know what happens to the caregiver I guess I am a good example..........If you really want to know what it's like you can email me. My email is in my profile.

But until your husband breaths his last breath.... you got to fight it with all that you have. Don't give up....don't let him give up. Get educated. However you should get all his affairs in order.... but never give up. Miracles happen everyday.

My husband may have died but I am still fighting. Just for other people now. The more people get educated the better chance they have of beating this horrendous disease.

Take care of you too..........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.


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/7/2008 6:58 AM (GMT -6)   
I am not sure how to find the thread from Nurse Shelly that you all referred to?
Can someone tell me how to get to it?

And - I am overhwhelmed by the response from folks that are in/or have been in my situation.
I thought I was alone in the world.

PS - My husband is going back into the hospital to be 'tapped' AGAIN this morning.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/7/2008 7:35 AM (GMT -6)   
Good morning La Bunna,

You are not alone anymore. You now have a very compassionate online family to lean on here at HealingWell. We have a lot of wonderful people here as you can see. But there's a lot more of us too.

We bumped up most of the educational threads to the front page. just scroll down the list when you first click into our Hepatitis forum. They should all be on the front page now right under this thread.

Hope your husband's tapping goes well. Have a good day. :-)
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.


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/7/2008 7:49 AM (GMT -6)   
Thanks
I just found it. 
It is very very illuminating.  The doctors aren't telling us anything like this.
Scarey, because he is further along the deterioration than I had thought.
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/7/2008 11:19 AM (GMT -6)   
La Bunna, If there is one thing that I have learned is that the doctor's tell you nothing about this disease. My husband was told you have cirrhosis and prescribed some medications. I learned what I know from the internet. That is how I found this site, and I am so thankful that I did. It has really been helpful to learn of other peoples experiences with this disease and know that there are others that understand what we are going through.
Butterflythree
 
There is always hope!


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/7/2008 12:04 PM (GMT -6)   

I've just returned from the hospital.  Of course, they admitted my husband again, to 'fix him up'.

An encouraging note, though, is that THIS time while we were in the exam room, the transplant surgeon came in an examined my husband.  We've seen nurses, nurse practioners, residents and our doctor's partners.... but never a transplant surgeon.

As dispondent and disgusted as I am, the sight of him was uplifting.  Could we be getting closer?  Although, we were told once again by our primary hep doctor that the MELD score was not any worse.  (In fact it had gotten oddly better)   His symptoms have accelerated - and his MELD score got better.  I find this just plain weird.

Isn't it his liver that is causing all these symptoms and maladys?  I don't get that.   Can you just die from the symptoms and keep that "OK" MELD score?

Also - since I only found and joined this forum yesterday - (at the end of my rope yesterday)  I have a lot of reading to do and a lot of posts to catch up on.

Thanks to all who have helped me with their good info so far!

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/7/2008 2:34 PM (GMT -6)   

LaBunna

I know how frustrating it is.  The same thing has happened to my husband.  He can be so sick admitted to the hospital and his MELD goes down.  Start getting copies of his blood work.  They will give it to you if you ask.  I have started a note book.  The MELD is based on three things.  1ST-Creatine (Kidney Function) 2nd-Bilirubin 3-PT (has to do with blood clotting) 

Once you get these three figures you can google MELD calculater.  Then all you have to do is put the numbers in and it will calculate his MELD score.  My husband gets dehydrated his MELD goes up.  He goes in the hospital they "Tune him" as the Dr.s call it and his MELD goes down.  Its crazy.  If your husband is swelling a lot they will probably adjust his diuretics. 

Remember to try and gets lots of sleep.  You will need it to take care of your husband. 

JoAnn

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/7/2008 3:20 PM (GMT -6)   

Exhausted,

That is really good info - that MELD calculator.

I will start using it myself!   And I will keep a notebook, too, of the bloodwork.

I found, as you probably already know, during all his years of being sick on the Hep C 'treatments' that you HAVE TO TAKE CARE OF THINGS YOURSELF.  Too many times I got 'the run around' from nurses or labs.  Too many times we were give plain old incorrect information.  Too many times we were left wondering "what just happened here?".

You are a proactive gal, and I am going to use your experience and information to HELP MYSELF and hubbie.

Thanks and thanks again!

 

Thank you so much.

 


waycool
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/12/2008 12:53 AM (GMT -6)   
La Bunna, after a bad exp. with interferon, I was left with "taps" in my upper & lower abdomenal cavities once a week.They were routinely draining 3-6 liters a week. I was then given a TIPS shunt, which my body slowly adjusted to. I am down to 2500 mg of salt per day (sometimes more) with no more taps & very little fluid build up. I am taking 20mg amiloride, 80mg lasix per day. Talk to your doctor. -Steve

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/12/2008 7:51 AM (GMT -6)   
Steve, Just wanted to welcome you to the forum. It is good to hear that you are doing well.
Butterflythree
 
There is always hope!


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/12/2008 8:17 AM (GMT -6)   
Question for you, WayCool,
 
How do you feel your Encephalopathy is doing since the TIPS? 
No change?  Some change?  Major change?
Our doctors have pretty much decided to do the procedure on my hubbie.  "Next time".  They released him yesterday (after a draining session) and he is home now.
 
Thanks for your input and prayers for your health.
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/12/2008 10:08 AM (GMT -6)   
Hello Steve, I just wanted to welcome you to HealingWell. Thank you for giving La Bunna some answers. I know that we have had some members with experience with the TIPS procedure but can not remember who they are.
We are a pretty well rounded forum with a bunch of very knowledgeable and compassionate people.

Welcome again........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.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/12/2008 9:39 PM (GMT -6)   
Hello Steve
My husbands Dr. are talking about a TIPS after 15 months of being tapped.  Right now its coming at least once a week and getting 4 to 6 liters.  He is now on 1MG Bumex and now on 300 mg Aldactone.  He is also on Neomycin twice daily (500 mg each).  What I was wondering how long you have had the TIPS and how it affects your amonia levels.  I have heard of people that have no problems with the TIPS but I think those people never had any amonia problems to begin with.  I could be wrong.  Thank you so much for any help you can give any of us.
 
JoAnn

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/13/2008 8:32 PM (GMT -6)   

LaBunna

I forgot to tell you I had a good conversation with Jerry's Gastro Dr. On Friday about the live donor program.  He told me the Univ of Chicago is having a lot of success with the live donor program.  He thinks they are doing most of them.  I just thought you might be interested in that little tidbit of info.  Hope you are doing OK.  We go tomorrow to get tapped again.  It will take most of the day.  Have you got any more info on the TIPs.  I just found out a friend of my daughters her Dad had a TIPS.  I'm going to try and reach her so I can talk to her mother.  Her father died last year.  From what I understand he got a viral infection and that is what killed him. He was on the transplant list for 5 years.  They were just getting ready to remove him from the list.  Why they would do that  I don't know.  Also this info came to me from his daughter who might not have understood all the details.  I will keep you posted.

JoAnn

Carol I know I owe you a call just been a crazy day.  Hope you are doing OK


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/13/2008 10:54 PM (GMT -6)   
Hello JoAnn,
I've been pretty busy myself. Got my yard mowed yesterday and car washed today and a nice Sunday dinner cooked. Mom had a bad day, but that finally calmed down and she & Terry sat outside while I washed the car.
Terry has an appointment tomorrow with his internist. Just a follow up. I think we might start seeing a GI again. Does it hurt Jerry to get tapped?

Carol
 


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 7/13/2008 10:56 PM (GMT -6)   
LaBunna, hi and welcome to HealingWell. I just finished reading your post and all the wonderful responses you recieved. What a blessing this site and it's members are. I was most interested in your concern over the possibility of your husbands passing and what you will do if he should. I think that all of us that have been in the face of death with our loved ones can totally relate to your fears. Some members have had to deal with this reality because their loved one did indeed pass on. The fact that they are still on the site and helping others is a testament to the healing that can and does happen even though at the time you really don't think you can survive it. Pink Grandma is absolutely correct in saying that you should NEVER EVER give up hope. I have come to the sad conclusion that for me, and I can only speak for myself, and my own grief over the loss of my precious mother was based soley on my selfishness to keep her with me. I was angry, sad, hurt, depressed, etc. etc. etc. then finally I had to face the fact that it was for me I cried......not for her. She was finally at peace with no more pain. But I on the otherhand had alot of pain just in losing my mother, my best friend, the woman I admired most in my life. I think that I was able to come to grips with it all at that very moment. I still cry and I will always miss her. That never changes, at least for me but I cry less as time goes on and I laugh more. I now think of funny things she has said or done, or things we did together that brought us happiness. What seemed so impossible just a few short months ago are now possible.
Your questions and fears are real and we shouldn't be afraid to ask them. Our society as a whole discourages us from being open and frank about death and after dealing so many years in the health field I have come to realize that this isn't to our benefit at all. I hope not to offend anyone by posting this way but I think in the scheme of things it helps us to express the fear and find what has helped others to cope.
Not to be trite or anything I would add that several years ago one of my patients was talking to me about his impending death. (He had terminal cancer)
He was expressing his fears and had some comments and questions all at the same time. He was lucid and had put a lot of effort into formulating what he wanted to say. He wanted some answers that I wasn't sure I was comfortable expessing. After some hesitation on my part he gently took my hand and said very clearly, "Shelly, why are you so afraid to talk to me about death? I don't want to die but I know that I'm going to die. We are all going to die so why are you so scared to talk about it? It will help me and my wife if you just talk to me and answer what you can."
How ironic it was that he actually comforted me at a time when he needed comforting. I learned from him and I changed much of my thinking and my fears about asking questions or giving some answers about death.
I don't know if this helps you or not.....I hope it does in some small way. You are far stronger than you think you are. Learn all you can about this disease, be proactive in your husbands care, ask questions of the Dr's and demand answers. Never say never and never give up hope. Sometimes hope is all we have.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/13/2008 11:13 PM (GMT -6)   
Shelly, You are always so helpful. It is good to hear from you. I hope you are doing well and your book is coming along. Hope to hear from you again really soon.

Take care. You are still in my prayers.
Butterflythree
 
There is always hope!


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/14/2008 9:40 AM (GMT -6)   
Hi Shelly
 
Thanks for your input and experience.
 
I should have mentioned that I have some experience with losing a dearly,  dearly loved one.
My father died on June 30th (this year) after a long long long battle with several cancers.
I have a lot of faith , but I had to ask God "why did you let him suffer for SO LONG?"  Of course, I'll never know why.  But, it's over and I keep telling myself, like you said, at least he isn't in pain any longer.
 
I was at his side every weekend - as he lived 300 miles from where I live.  And then the final moment and then the funeral.  It is still extremely hard for me to think about it and deal with it.
The worst (pity party for me... when will I stop this?) was that my hubbie was absolutely too sick to travel.  So I went alone everytime.  And had the funeral alone.  (Family members were there... but the person I really needed and wanted there to support me couldn't be there.  Hubbie)
 
So, yes, I do have recent experience with loss.  I didn't LIVE with my dad, though.  I visited him and then went home.  I LIVE with my husband.  Cannot imagine being in this house without him ever coming back again.   Ugh.  Yuck.  Ouch.  It hurts.
 
I've made the decision to call a counselor today.  He is a part of our parish, so I know he will be faith-based... which is what i need.
 
Also - as a goofy note to everyone who reads my posts - my husband has FORBID me to use our real names on the internet.  So.... OK.  Whatever.  I'll respect his wishes.
 
Thanks to all.
You are good people.
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/14/2008 2:19 PM (GMT -6)   

LaBunna, my condolences to you on the loss of your dad.  I'm sure it was painful, especially to have to deal with it without the support of your hubby.  Certainly it helps to know your dad is no longer suffering.  I lost my own dad to suicide when I was in my late 20s.  What a very painful shock that was!  But I had to keep telling myself that he was at peace.

Shelly, thank you for sharing your experiences so beautifully.

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/14/2008 6:58 PM (GMT -6)   
Hi La Banna, Just wanted you to know that I know how you are feeling. I lost my mother 14 years ago. She was murdered by my step-father, who then turned the gun on himself and took his own life. I still miss her very much. It has gotten easier over time. It hurts me very much to think of losing my husband. We have been together so long. It seems like it has always been us. I have already lost part of him due to encephalopathy. The lactulose helps alot, but he is not the same man anymore. Everyday I hope to look into his eyes, and see the person I know. I can only hope that transplant will return him to me. Just keep believing that your husband will get that transplant. That is what I always try to remind myself. It is hard sometimes. I was always an optimist but since my husbands illness I catch myself becoming very pessimistic. I am working on that. I haven't given up hope though, and I know you won't either.

You are still in my prayers.
Butterflythree
 
There is always hope!

New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Saturday, August 23, 2014 2:28 AM (GMT -6)
There are a total of 2,200,649 posts in 244,862 threads.
View Active Threads


Who's Online
This forum has 155162 registered members. Please welcome our newest member, AsianMan.
228 Guest(s), 2 Registered Member(s) are currently online.  Details
33333, MsWorryWart


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer