End Stage Liver Disease

Tripp you have a lot of friends here. Lot's of prayers are being said for you and your husband.

Cabin fever can really work a number on people. It does me. I hate the cold wet weather but yesterday when it was raining it felt really good to be outside..........rain and all. My co-workers thought that I was nuts. But it was driving me nuts being cooped up inside too long.

I know how scared you must be. You know your husband better than even the doctors. I always doubted myself when my husband needed to go to the ER. I kept thinking that the hospital would think that I was over-reacting......but each time I took him they would admit him, or if they didn't have any beds or not enough nursing staff we would be in the ER for 24 hours or longer getting him stabilized.
Like you and every caregiver out there....I was totally exhausted and stressed to the limit. It came pretty close to killing me. So please try and take care of yourself too. Can your sister-in-law give you a little break? Even if you don't go anywhere and curl up in a corner and read a magazine. Just something to get your mind off of it for a little while.

I thought the same thing about my husband ........that there would come a point when I could not take care of him anymore......His doctors kept telling me to get hospice involved....I resisted until finally his transplant doctor told me it was time....Then I knew there was nothing left that they could do for him.....with the help of Hospice, I was able to keep him home to the end. Both him and me had had enough of hospitals.

Take care...........thoughts and prayers...........

Tripp, you sound pretty together to me and I'm glad that you are making time for yourself.  It's important.  I'm very glad to hear that Ed is doing better.  As you know by now, it's a roller coaster.  So enjoy the better days!  And Happy Birthday!  You have survived this long--you are stronger than you think!  And Happy Birthday to Mr. Ed, too. 

I have a question. Is loosing teeth part of the stuff that happens? Ed has been loosing his teeth on a regular basis. They are just falling out. So far he has lost 4. The teeth are also getting darker. His teeth were fairly healthy before this started. Everything else is pretty much the same. He has his ups and downs as usual.

Ed has 3 more weeks to go to beat the last time frame they have given him. He has beaten 4 of them and is going on his 5th. Tomorrow is a scary day for me. I have a drs appt in day surgery. They discovered a fissure in my vertabrae that is not healing evidently. So they are going to inject some florescent stuff into my spine to pin point the areas. After they have located them, they are going to inject steroids into the areas affected. I know this is not anyway as bad as what some of you or Ed is dealing with but it is just another worry added to my mind. I've been dealing with the pain for months now and 5 doctors later someone is finally listening. Problem is the dr has a really heavy accent and I can hardly understand what he says. He mentions shots in the back but I don't know if he is just doing a local or going to put me out completely. I'm hoping for the second as the asked me to have someone drive me home.

Ed is in another of his downswings. So he is sleeping a lot and his speech is really slurred and confusing. I could not quite figure out something he said a while ago.  It was either "You didn't tell me" something   something " cat mat" or "you didn't tell me you were back" I think it was the second but can't be totally sure. As he does come up with some totally off the wall stuff sometimes. Sometimes he swears up and down that he heard his son's voice when he hasn't been here at all. Sometimes talking with him is like working a puzzle as he substitutes names of things and names of people. He might say blueberry instead of blackberry or use someone elses name for the person he is talking about. He also uses guilt trips on me when I have to leave for awhile. When I get back he will say stuff like "Well I only fell twice while you were gone" Yet there isn't a mark on him. So I really don't know what to believe.

Thank-you once again for letting me ramble on about my worries and woes. It does help to let it out once in a while. You guys are great.

Thoughts and prayers will be with you Tripp tomorrow.  We will be waiting to hear how it went.  

Connie is absolutely right about not taking it personally.  Sometimes it's hard though I know.  I must have walked a hundred miles around our property to calm down on my husband's bad days.  My husband was also good about laying on the guilt too.  Just remember to take care of yourself too.

Have a good evening........

OOOHHH (((Tripp))), I am so sorry to hear about your daughter and grandson. Life sure isn't fair some times.

Your husband's son couldn't take care of him for even a couple of days or so? Maybe it's about time for him to get a taste of what your life has been like these last few years.
I think I would just tell him that you have to go to your daughter and he needs to watch his father...........because you are leaving regardless of whether he is there with his father or not. Just threaten him with it see if he takes the bait. You don't have to follow through with it if he won't watch your husband. Or maybe see about a rest home for a few days or so. There's got to be a way..........

I will be praying for you and your family..........

I just feel so frustrated right now. My daughter lives in NJ and I am in Oregon. So I would need more than just a coouple of days to go to her. Plus on top of the medical problems that are hitting my family, this stupid bus we are living in is slowly going to wreck and ruin. We have a propane leak in the cookstove but whoever converted the bus didn't know what they are doing. If you turn off the valve on the line that goes to the stove it also turns off the gas to everything else. There's 3 different valves and they all have the same results. Turn any one of them off and no gas to anything. The lighting is slowly going kaput one item at a time. With everything going on it seems I go from despair to anger. Any little thiing just sets me off. Ed can ask some simple question and I have to bite my tongue to keep from saying something that I dont really mean or throwing down whatever I was doing at the time. I'm seeing plots against me that really aren't there. I feel like a rubber band that has been stretched too tight and could snap at any minute. Ed's son is due here shortly and I am going to see if he will stick around for a bit so I can go for a drive to my favorite ocean view look out
Ijust feel so angry. I haven't had to deal this hard in controling my anger in a long time.
Thanks for listening and for your comments.

Ben a while since I have been on.  Ed is still with us. Problem is,  can not do this anymore. ur match was never a love match. But I made a commitment 15 yrs ago and have tried to stick it out.  For the last month Ed has decided I need to be home all the time. No more going up for a quick cup of cofee.  or any of my little outside quick trips.  For the last 2 yrs I've been just his caregiver. I feel horrible and mean, although all or friends say I'm not, bt I have decided that Ed needs to go t  a home. He sleps most of the time and eats very little. He has reached the stage where he needs 24 hr care and my health and sanity can't do it anymore. My daughter wants me to go to NJ for the birth of her new son. She needs me there as the baby has scoliosis and I need to be there. My sister-ai-law says she has ben watching me fall further ad further into depression.  just don't know how to get him to the home without it being a big kicking and screaming scene. He thinks there is nothing really wrong with himself. He thinks he can still do the things he always did.  he other day he turned on the water in the kitchen sink to fill a bucket in the bathtub.  My strength and sanity are almost gone and I have to do this. I just dont know how to do it.

Well it has been a long time since I have been on here. Just a update on everything. I ended up in placing Ed in adult foster care. I could not handle it anymore. I moved in with my brother and sister in law. Went to Jersey for the birth of my grandson. 9 lbs 20.5 inches.  He had some breathing problems when he was born plus the spinal problems. The breathing is ok now and the spinal stuff is not as serious as the drs thought it was going to be. He will probably have to undergo surgery at 2 yrs and again at 10 yrs.

Ed's new caregiver is also going to be his new payee and she took him to the bank while I was in Jersey and had him pull $100 out of thebank, unfortunately it was my acct. When I got back, she had him pull the rest of the funds from said acct and close it. I still have not figured how they managed that as my name was on the acct as primary acct holder. Then they went to Senior and disabled, to our case worker, and claimed I stole his money from SS. So the caseworker and I went over spendatures on the puter and I couldn't acct for $30. Had to write them a check for that. He also claimed that as his money purchased the bus, pickup and everything, that it was his and I was entitled to nothing. My name is on the titles but I guess they forged my name when he sold the bus.  My family is really angry at this treatment but I am just gladto be out of the whole mess.  I guess 15 years does not mean anything to some people. So I will stop grousing and whining now to say that my health has improved significantly since I have moved. After I get everything unpacked and settled I will need to find a new job. but I have my UI for now. Thank-you for being here for me when I needed someone to talk to.

Hi Grandma Tripp, Congrat's on your new grandson. So glad you updated us. Glad your health is getting better.
Been there done that with my first husband. I didn't care that he ended up with everything after 25 years......I just wanted out. So I can relate to you on a number of fronts. Sometimes it's easier to move on by yourself.........it was for me.

Don't feel that because your are not with him any longer that you have nothing to offer this forum. Your experience with his liver disease is priceless to others that are going through it. So please come back and share when ever you can.............

Thoughts and prayers for a terrific knew life..........

Hello Tweety and welcome to HealingWell. Please accept my sincere condolence also. My husband died of this horrible disease also. You are absolutely right, one never knows when anyone going to be called to meet our father.

Tweety if you don't mind my asking.......how long has it been? It's been about 2-1/2 years since my husband passed. Some time it is still like it was yesterday.

Take care.......thoughts and prayers........

Hello and Thankyou.

Yes he had symtoms for about almost a month.I looked them up online so i could know how to possiably help him.

He would not go to the hospital finally i told him i would call 911 if he didnt go. On that last day when he was home he was feeling a little  better but by now he was a bit jaundice.Since he was feeling a bit better he went and showered and told me he was ready to go.You know i really do think he was leaving there were so many signs i think he just didn't want to scare me.By the time we got to the E.R he was so out of breath and more yellow.He begged me not to leave him and go i told him under NO CIRMSTANCES would i ever just leave him. I stayed with him all night.As i was rubbing his legs as he lay in the E.R he took my head in his hands and told me how much he loved me and no one ever took care of him like i have and  that i was his angel at that point i think i knew he was going soon.He passed on july 4th of 2009.As i drove home i was crying horriably for myself and him, but in a way i was relived he was not in pain anymore.He has five brothers and sisters but they live far away and really dont like me.So needless to say theres no communition.But my daughters from my first marriage are there.

He was everything to me for nineteen years.I struggle through life without him everyday but i know in my heart he is in a far better place.

Tweety, I'm so sorry that his illness wasn't diagnosed sooner.  Perhaps then he would've had a chance at a longer life.  However, symptoms usually don't appear until liver disease is advanced.  With myself, my hep C was diagnosed in '93, but I'd had fatigue for a couple of years.  There was no test until '92.  So I was told it was menopause, stress, etc.  Also, when I was found to have a huge liver tumor that had metastasized to the inferior vena cava, it was not operable by then.  However, thanks to Mayo and a drug study they were doing, the tumor was shrunk and killed which allowed them to safely remove the rt. lobe of my liver.  It's possible the cancer will come back, but at least I've been given time that I wouldn't have had otherwise.  The year prior to the tumor discovery, nothing at all showed up on my annual sonogram.

You can be at peace knowing that your husband is no longer suffering.

Hugs,

Connie