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

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Posted 7/15/2008 11:40 PM (GMT 0)
Hi LaBunna,
I lost my husband to pancreatitis 6 years ago. Two weeks after his death I had to tell my sons that I had Hep C. They were 13 and 15. The hardest thing for me was I felt robbed. He was the strong one. He was a Navy corpman for years and he took care of us (when he wasn't drinking). I did well for about 6 months. I had to. my oldest boy tried to overdose, and he needed me. I lost it for a while. Pulled away from everyone. Basically I just couldn't go on with out him. Or so I thought. You know what, I am stronger than I thought. I won't lie. It has been hell, but I am the proud grandma to 2 beautiful little girls with a third on the way. When I think about what I would have missed......well I'm glad I hate pain so much because I just couldn't hurt myself. I miss Fred every day. I also still find myself angry at him. But I am more thankful for the time I had with him. This may sound very unfeeling, but I hope you will try to understand. I envy you. By that I mean we had no idea he was sick and he was gone in a day and a half. There are so many things I wish I had said. So I still say them out loud and I am sure he hears them. First make sure to take care of yourself. You will nto be denying him anything if you take a few moments for you. In fact you need to or you will be sick yourself. And as impossible as this may sound, take it one day at a time and at the end of the day thank God for giving you one more day with him. As I sit here crying remember you will get angry, sad, all kinds of things and you are intitled to all of them. Don't feel guilty for the things you feel. That is what makes us human. I will pray for both you and your husband. There are super people here. Take advantage of it. And take care of yourself.
Love and prayers,
pasey
Posted 7/16/2008 12:30 PM (GMT 0)
Pasey,

 

Wow. 

And thank you for taking the time to share your experience with me.

 

I've taken a giant step backward and I am looking at what is going on here with a different attitude today.

 

Thanks again.

Posted 7/17/2008 3:54 AM (GMT 0)
Hi Pasey so nice to hear from you. La Bunna I second everything Pasey said.

Hope you two are doing okay. I'm doing fine. Getting ready to hit the hay.

Have a good night. smurf
Posted 7/29/2008 12:47 PM (GMT 0)
 

Hang in there that is all you can do and like someone said just try to get affairs in order but dont give up there are miracles.

My 56 year old husband of 34 years had hep c and did get a transplant in Miami (the greatest transplant center) in aug 2000.  He was near death and so much of what you describe sounds identical, then his condition was so bad we went on Angel Flight to Miami where he was in ICU waiting for a liver, well he made it and made it thru the transplant.   Well its a tough surgery and at times you just cant believ what they are going thru.   I was at his side the entire time.   Well be got to come back home 2 months after the transplant.    THe medications are difficult but when your a fighter like my husband was he handled it all.    It didnt help that he was also a diabetic due to the interferon treatments early on.  HE even had to go on interferon after that transplant as well.   That was difficult.  Well we had 3 years together then his poor body just couldnt fight any longer.  He had a stroke and we ended up back in Miami at the transplant center.  He stayed there and when I knew he couldnt fight any longer I pushed the use of his living will. (be sure he has one) the Drs fought ne but I knew and he let me know it was time.   I brought him home under hospice care.  He was only home 1 week and he passed, he was here at home where he wanted to be in our house that we built. 

I was in denial and did not have the things lined up that would have helped me at that horrible time.  We had insurance and all but I just didnt have it straight in my mind as to what to do who to call,  thank God for my sweet brother in law he came in and handled alot of stuff when I just couldnt.

 

It has just been 5 years this month.   Yes life goes on and I decided that If I spent the rest of my life miserable because of loosing him he would have been unhappy, so I picked my self up and have continued to live.   Believe it or not I am now remarried, my new husband lost his wife of 30 years to breast cancer so we both lost our best friends and now we have each other.   We are able to bring our late spouses with us into our marriage.    I am sure If someone had told me this could happen I would have never believed it but part of is that I decided to live again and see what happend. Strange thing was I was not looking for anyone and neither was he.  He and  my late husband and I belonged to a corvette club so I knew of him thru that.  

     I know as caregiver it is like you have the disease too, just never give up and take care of yourself. If you want to email me please do.        Lyn

Posted 7/29/2008 1:05 PM (GMT 0)
Thanks so much for your story, Lyn.

 

I am sorry... so sorry... that your husband had so many health problems and eventually had to give in to them.  I am so sorry.  It hurts me to think of it.

 

But, the new life you have sounds very nice... supportive, loving and comfortable.  I guess since you both lost your spouses, you really can 'relate' to each other.

 

I'm sure you understand that at this point in our battle, I cannot even fathom a life without hubbie.  You remember feeling that way, don't you?

 

But, I'll try to keep strong.  I have another post out there called "we got THE CALL" which documents all we went thru 2 weeks ago when we actually got THE CALL. It came as a complete surprise.  But, no liver.  Back to where we were.

 

This forum is so strong and so full of good storys - even tho we are all here due to bad storys.  I appreciate all of your strengths and weaknesses and loves and angsts and hopes and intellegences.

 

Thanks again.  Peace be with you.

Posted 7/29/2008 1:26 PM (GMT 0)
 

Yes I know how it feels to think of life without hubbie.   I could not imagine it so I just didnt,  I loved him very much  we were married when I was only 19 and he was 22  we raised 3 kids and thru all the tough times medically, (at age 21 I had a suspected brain tumor and had brain surgery) we managed.    I saw him thru this nightmare of ulcerative colitus,  an illeosotomy,  diabetes, hep c caused from a blood transfusion from a motorcycle accident when he was a teenager.  THen the transplant,  like it was said when they are wonderful men that have stuff happen beyond their control all we can do is support them and be caregivers.  My husband was a hard working professional man, college degree, the most brillant man I have ever met.   When he went on disability for the 11 years prior to his death is was hard to watch him struggle with the loss of the life he loved working.

I could not imagine ever being happy again when the love of my life left me.   I was so relieved for him that he was no longer in pain but not for me I wantet to keep him here forever.  I hope for that transplant for your husband,  I will tell you I saw alot of miracles in the transplant center in Miami.    DONT GIVE UP.    Please keep in touch.    When I was going thru this I had no one that had been thru it to talk to.           Lyn

Posted 7/29/2008 1:46 PM (GMT 0)
Lyn,

I guess you REALLY DO know what I'm going thru.

 

Hubbie had been a hard working attorney, (with a AAA personality type), for the last 30 years. He was almost a workaholic.  Not quite, but really a hard worker and always always on the go - thinking, doing, thinking, doing, etc.

 

Since Jan 1 of this year, he has been 'retired'.  His doctor told he can no longer drive (due to the encephalopathy).  As you can well imagine, with the enceph'y, he can certainly no longer practice law.  Jeez.... he can't even remember how to lock the front door anymore!

 

So he sits.  He sleeps.  He has the TV on all day and all night.  He is just wasting away.  Mentally and physically.

 

You know...........  you've been there.............  it hurts..........

Posted 7/29/2008 8:36 PM (GMT 0)
La Bunna,

Yesit hurts it hurts really bad and sometimes you just dont know how you will make it to the next day, but you will. Your sick of people telling you how strong you are and how you will make it. I know I was. OR I just dont know how you do it. THe answer is I dont either but I dont have a choice is all. WHen you love someone you just do for them what it takes to help them as much as you can is all. I used to think how sad it would be to have to go thru that all alone. So for that reason as hard as it was I was glad I was there to help and try to make life as normal as it can be.
I will never understand why some of us are given such burdens, I doubt I ever will be able to either. My husband was my life for 34 years and even though he is gone I love him just as much today as I did the day I married him. He doesnt have to be here for that. I miss him, I miss him painfully and I cry, I still cry sometimes. Not as often as I used to. Birthdays, anniversarys, walking our little girl down the aisle for him hurt, it always will I guess. Just know that there are miracles and I have known so many transplant recipeints that are living a good normal life. DOnt give up.
I do believe in Miracles. My prayers are with you. Lyn
Posted 7/29/2008 10:51 PM (GMT 0)
Hi Lyn, I don't think I have ever welcomed you to the forum. It sounds like you have been through alot. I am so glad you were able to pick up the pieces of your life and go on. Thanks for taking the time to share your experiences with us. It is really helpful. Heartbreaking at times but helpful. My husband is not yet on the transplant list. He is not sick enough yet. For that I am very thankful. But there are times I wish that he would be sick enough to be listed so that I could have him back (I hope that makes sense to you). Coming here has been very helpful to me. I am very glad there are people like you to help us all through this.

Take care. You will be in my prayers.
Posted 7/29/2008 11:04 PM (GMT 0)
Lyn,

You are sooooooooooo on the mark!

People are always saying to me "I don't know how you do it"  and "I couldn't do it".

 

I always think, "I don't know how you WOULD NOT do it".  This is your husband.  This is your love.  This is your chance to be a good and decent and caring and loving human being.

 

How would they NOT do it? 

 

Would they just walk away into the sunset?

 

Oh gosh.  I am so sensitive right now.  I am ready to cry.

 

Please know this, though,

Your words are very inspirational to me.  I am so appreciative that you picked up this post and took the time to write.

 

Thank you.

Posted 7/29/2008 11:54 PM (GMT 0)
La Bunna

All I know is when my husband was going thru end stage getting on the transplant list. I was scared and all alone with miy fears, I couldnt burden my poor husband with my fears, although Im sure he knew them. So I became the leader, calling Drs, being the persistant one and teaching myself all I could about the unknown. THe Drs just dont tell you what you need to know. I guess its so routine for them I just dont know. I didnt have a forum like this and I have read some wonderful inspiring things here. Just know if you want to ask me anything I will try to be honest and as helpful as I can. I know I sure could have used it. Like what will it be like after the transplant, what about those antirejection drugs anything.

Yor right alot of people cant do it they do walk away from someone they say they love because they dont want to deal with all the pain. We really have this disease with them in a way. I dont want to make you cry, although Im sure at times you already feel cried out, I sure did. Just know as long as he is here and waiting for that liver there is a chance and when that call comes it will be hard to but your in it for the long run. I hope I have helped you and I am glad that I picked your post to read as well. WHen I read what you wrote about the interferon the acites, etc. I felt like I was reading something I had written. Iam so glad that something good can come from my experince, helping someone else handle it just a bit better.
Take care of your self.. I know easy said hard to do. Just try hard to do it. Lyn
Posted 7/30/2008 12:03 AM (GMT 0)
Butterflythree,



Thank you for the welcome. I am glad that I might be able to help someone deal with Hep. C. I do know we become experts on it when we live it. I do know what you mean about wishing your husband was sick enough to list. I remember saying it over and over. Why is it they have tob be so sick to get listed, doesnt make sense, maybe if they were a bit better the transplant would be easier. I just know one thing I encourage everone I know to fill out the donor card. I hope your husbands time comes soon. Rembember there are miracles at transplant centers, I have seen them... Lyn
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