HealingWell
Search Close Search
☰

end stage liver failure

Support Forums
>
Hepatitis
✚ New Topic locked
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/5/2007 4:52 PM (GMT 0)
Good morning ,

 

   Well we just got a call from the transplant center and my mom has to go down for more testing,

Neurologist, pulmonary doc wants to see her and the cardiologist. Hope that is the right spelling :-)

And more chest x-rays. We are going to try and work it out that she has all of her upper and lower GI done there also. Plus more labs.

 

  Paula with your x-husband, tell him it is one day at a time and if need be take it 1 hour 1 min or even 1 sec. Recovery is hard, been there, I am now in my 11 year should have been my 20th year, but stuff happens. Just remeind him he is powerless over his addiction. Have you yourself checked into Allon. It is for friend and family of somebody in recovery. Good luck with it all.

 

 

Jamie

Posted 9/5/2007 4:55 PM (GMT 0)
Pink Grandma,

  Differant subject, but from dealing and being a caretaker, my fibro has been in a flare since we got back from her last set of testing. I cant get on top of it. I am lost right now.

 

Jamie

Posted 9/5/2007 5:14 PM (GMT 0)
Jamie, hi from another sober alcoholic. I had 21 yrs. on Aug. 1st. Very good suggestion about Al-Anon. (Wanted to give correct spelling, in case it is looked up in the phone book or online.)

You sound like you need a good rest. Don't forget to take care of YOU. Remember HALT: Don't let yourself get hungry, angry, lonely, or tired!

Hugs,
Connie

Post Edited (hep93) : 9/24/2007 4:41:37 PM (GMT-6)

Posted 9/6/2007 4:33 AM (GMT 0)
Hello Jamie, I really feel for you. I still remember how hard it was for me to try to remember and do everything for my husband while I was in so much pain myself. I take fish oil and vitamins with the B vitamins. They seem to help me. I also take ibuprofen for the pain when it gets too bad. You might want to go on the fibro forum. There's alot of nice people there too. Hope you start feeling better soon. Take Care .....Pink Grandma
Posted 9/24/2007 6:46 PM (GMT 0)

Good afternoon,

 

  My mom was told to watch her protien intake, (red meats) does anybody have a good diet that works with liver failure.

Thanks a bunch,

Jamie

Posted 9/24/2007 10:57 PM (GMT 0)
Jamie, red meat is the most difficult protein to metabolize. I'm not much of a meat eater, anyway, so I very seldom eat red meat (maybe twice a year.) Instead, I eat beans, chick peas (garbanzo beans), eggs, chicken and turkey, and sometimes fish (not much of a fish eater, either, except for shellfish.)

Have your mom eat lots of fresh fruit and veggies, salads, pure juices. Also low-sodium soups. Watch fats, as well. No fried foods. Just think "clean" food with minimal animal protein.

It sounds like your mom is getting closer to transplant. She is very fortunate to have you looking out for her.

Hugs to you both,
Connie
Posted 9/25/2007 12:28 AM (GMT 0)
 Connie, thanks for some idea's for the differant foods, she eats peanut butter, the good news is we already do lots of chicken and fish, well my family does the fish, I am with you not a big fish eater LOL. She seems to also crave sweets. I have to watch how much of them she eats. I am a baker and always have some type of cookies or cakes around the house. So I make sure I hide them at night. She gets so upset with her self when she can't remember how to do simple stuff like working her remote to her TV. But the good news is that we have her out walking a couple times a day now, think that is makeing her feel some what better .

 

   They have changed my mom off of the lactulose to a antibiotic Xifaxam, it has less side effects, but works the same. Anybody else useing it?

 

 

Peace,

Jamie

Posted 9/25/2007 12:56 AM (GMT 0)
Hello Jamie, They started my husband on it along with his lactolose... his last few months. It's great that your mom doesn't have to take that nastly ole' lactalose. Just keep a close eye on her to make sure that the Xifaxan keeps doing the job. How are you holding up? Have a great evening. :-) Pink Grandma
Posted 10/6/2007 1:54 PM (GMT 0)
Pink grandma,

    I am doing pretty well, the weather makes me hurt. And my partner just had the nerve inplant thingy put in her spine to kill pain with out meds. So I am playing grownup again. LOL As I call it. But guess thats life. As far as my mom goes I don't think the xifaxan is working so well. We have moved her up to 3 doses a day right now, only becasue we leave for Mpls to see all the docs again on Wed. It is a 3 1/2 hour drive, and we all know what lacalose does. And she has to do the the meds for lower GI. I am realy afraid she is going to have to go back on the lactose, When we return home on Friday. She has been realy out of it again. Good news is we have her down to less the 1/2 pack a smokes a day. Some times I get realy afraid and think we are going to have to put her in nurseing home. It is hard to keep an eye on her 24/7. My youngest is in alot of activites and is busy, being only 13 well she will be 14 the day after Christmas, but she can't drive yet. And our oldest... ahhhhhh wanna kill her, got caught driving with out ins. And also can't drive right now, So mom here is doing all the driving . hummmm maybe thats why I got a key chain for my b/day that says moms taxi. tongue It is hard to watch somebody who has always been so independent, not know how to turn the vol. down on her TV or change the channels. Yes I know I have to take care of my self too, sometimes I forget to do that. Kinda like right now and had to go back on the hydocordone for pain, becasue the tramadoll is not holding though break though pain. They have also put me back on flexeral to help out. Anybody need a sweater I could spit one out for you. yeah Well thats about how things are around here for right now. Hope everybody is well and looking forward to up coming holidays.

 

Peace,

Jamie

Posted 10/6/2007 1:56 PM (GMT 0)
oh another question, about her eating I feel like I am going have to lock up food casue eats till she is sick, has anybody eles gone though this?

 

peace,

jamie

Posted 10/6/2007 4:12 PM (GMT 0)
Good morning Jamie, good to hear from you again. Sorry that your mom is doing so well. And yes they may have to put her back on the lactalose . But if they still keep her on the Xaxifan maybe she won't have to take as much of the lactalose so that she may be able to make the trip with very few pit stops. And yes my husband went through that stage of eating until he made himself sick. I had to stop buying goodies. They were what he seemed to be craving. How did her transplant evaluation go?

You gotta love teenagers. When my kids were teens they gave me a run for my money. Thinking back on it now it amazes me that we survived those years. It was a tough time for my family back then. Both of my kids have a daughters. When they complained to me about parenthood I couldn't resist a little dig. I told them that if there is a God... that their daughters will give them a little of the problems that they gave me. You should have seen the looks on their faces. Priceless. But now that they are in their 30's we have very good relationships. Have a great day Jamie.
Posted 10/6/2007 8:13 PM (GMT 0)
Hi, Jamie! I just wrote a long post and it disappeared! :o The main thing I wanted to say is that Xifaxan is an antibiotic. I don't really understand how this works to prevent diarrhea with or without Lactulose. Your mom is being seen at Mayo Rochester, correct? They have dieticians who can probably come up with a good diet for her. Before my hepatectomy, I was big on sweets and also eating all the time. Since the surgery, sweets don't appeal to me much and I'm eating mostly salads and soup. I used to enjoy spicy food, but my taste buds can't handle it now. Same with salt. I weighed the other day and found that I've gained back 2 lbs. of the 17 lbs. I lost (10 of that was water weight, prior to being put on water pills.

I'm not doing too well lately. Having a lot of constipation, poor appetite, and back pain. I'm trying to hold out until the 18th and 19th, when I will go through a battery of scans and tests, to see if the cancer has returned, and also if I am healed enough to have hernia repair (please, God!)

My 15 1/2-year-old granddaughter has been giving everyone fits since last year--minor scrapes with the law, cutting school, etc. I hope she will graduate HS...and without getting pregnant! My daughter is a single parent, so it's rough. Unfortunately, she is too far away for me to see her. I think it's been a year since I saw my daughter and 4 months since my granddaughter stopped by to see me on her way to the beach.

All my best to you, your partner, and your mom. Please keep us posted.

Hugs,
Connie
Posted 10/6/2007 9:29 PM (GMT 0)
Good afternoon  Connie and Pink Grandma,

     Connie I am so sorry you are feeling so bad, Sometimes you just wish the pain would go away for a little while. And yes Connie we are at the Fairview transplant center in mpls. Kids can be so much fun.. I still can't figure out how they live past 13 LOL. I am a self taught baker and usally have treats or goodies in the house, I have taken up having to hide them or just not make them because my mom think she needs to eat them all in 24 hours or less. The only people get upset when I don't make them becasue it is not fair to them. My mom is also graving ice, but just from haveing the gastic bi-pass I know that is from low iron, but because of testing coming up I have to take her off of her iron meds. I do under stand also with the kids, My partner Cathy and I have been foster adopt parents for the past 14 years. We have been together for 16 years. Our one daughters we adopted has FAE, and is a hand full, she spent the time from 14 to 18 in lock up and as soon as she was let go she was home for a couple of months new we only hear from her when she needs something. Sorry know this should be in another post, feel free to e-mail or IM  me any time.

     Pink Grandma,

   The fisrt set of testing went ok, the said she is at a 10 so have a while for transplant. But doing all of the testing they found stuff wrong with her lungs and heart. So she had to do stress test and a bunch of other testing plus seeing the nuroligest. Sorry for spelling. Upper and lower GI, think if you name it right now this she is haveing it done.

   Well ladies I have to get ready for a 6 year olds b/day party, keep well and remember one day at a time.

 

 

Peace,

Jamie

 

Posted 10/7/2007 5:10 AM (GMT 0)
"Fairview transplant center in mpls"

Is that affiliated with Mayo? I'll bet those cookies are really good, with you being a baker! :) What does FAE stand for?

Hugs,
Connie
Posted 10/7/2007 6:00 AM (GMT 0)
Hi everyone, I am new here as of right now. I was diagnosed with my liver failure because of hep about a year ago. I couldn't make the list because of my smoking. I quit them and after three months the coordinator resubmitted me to the board, and thank God I made the list. That was Tuesday 10-02-07, I am still in shock of making the list and afraid of what comes next. I am glad to have found this page to read, and maybe ask a few questions as they come to mind. Good to be here or anywhere, Ranger
Posted 10/7/2007 6:10 AM (GMT 0)

Connie,

 

  No it is not, they are with the Unniv. Of Mn. As far as my cookies and ect. goes yeah I have friends and other family members come over when they know I am baking. And now they are all waiting for me to start the holiday baking. During the time I have been maken, I have learned make the same ones for people with diabetes. All are made from scratch. Funny to is that is our friends and my youngest kids friends ask for when they walk in the house, ( Where are the treats) LOL

  

Check out this web site and it will tell you about FAE

What Is Fas/E

These fetal alcohol effects are often thought to be less damaging than the "full-blown" syndrome, however, they are often more debilitating to the person's ...
www.fetalalcohol.com/what-is-fase.htm -

Basicly her bio mom drank while she was pregnant with her. Never have figured out why women think they should be able to drink and do drugs while pregnant.

Anywho like I said before you are more then welcome to e-mail or IM any time. The one I use the most is Yahoo msger. Well I am off to bed, hope you have a restful night.

Peace, Jamie

Post Edited (jamiesota) : 10/7/2007 12:17:17 AM (GMT-6)

Posted 10/7/2007 6:14 AM (GMT 0)
Ranger,

welcome to the forum, hopefully as we all do is learn how to live,and have shoulders to cry on. Ask alot of questions and vent when needed.

 

Peace,

Jamie

Posted 10/7/2007 6:48 AM (GMT 0)
   Thanks, I probably will. I have been waiting so long just to get to the list and now have made it, and that brings up all new fears. Like not knowing when, but knowing it will. Very scary, wanting to find out as much about the procedure as possible before it goes down. Which may be possible or not, since I have no idea when. Well thanks, and will check in soon,  bedtime for now. redface
Posted 10/7/2007 7:19 PM (GMT 0)
Ranger welcome to Healingwell. Hope you got a good rest. Great news that you made the list . Congrats. Just make sure that you stay on top of all your doctors and the transplant coordinator. Make sure you have all the tests done when needed. Remind the docs if they don't mention it and you know a test needs to be done. Balls get dropped all the time. What I found out is that you have to take responsibility for your own healthcare just don't leave it up to the doctors and nurses. Do you have a caregiver that can help you out on your bad days to make sure things get done?

Jamie and Connie you just made me hungary taking about the cookies. I am going to have to bake some now. I hope your mom's other tests come out okay Jamie. Connie I am so sorry that you aren't feel so well. I hope that you start feeling better soon. I don't know how Xifaxan prevents diarrhea but they give it to people for that also. But ESLD patients get infections easily and the infections cause the ammonia levels to rise also. At least that's what I was told. So that's why they give it to some of the esld patients. It really did help my husband at first but near the end neither it nor the lactalose helped. Have a good day all.
Posted 10/7/2007 9:01 PM (GMT 0)
Pink Grandma, Yes I do have my wife as my caregiver to see about these things. But question, what is a bad day? So far I have been pretty lucky I guess. I am still working daily, I have missed 1 week because of not having enough strength to do my job. But I guess it will progress from here. I really do not know what to expect.
Posted 10/7/2007 9:04 PM (GMT 0)
I am hoping to get more info. on all that is ahead of me from some of you who have experienced it.
Posted 10/7/2007 9:38 PM (GMT 0)
Ranger that's great that you have only missed 1 week of work and are listed. My husband couldn't work from about Feb. of 2004. He made the list Jan. of 2007. Too many doctors and the transplant coordinator dropped the ball. He should have been listed by Sept or Oct of 2006. He developed liver cancer and because his cancer doctor didn't order his 2 chemoembulazation when he should have my husband's cancer grew too large and multiplied too much. They took him back off the list 2 weeks after putting him on. He past away the end of April. We gave it our best shot but didn't know enough to question the doctors about somethings. Thinking that they knew what they were doing. Not realizing that they had too many patients to keep track of all the testing that needed to be done. So I tell everyone who will listen.... Keep track of when every test is due. Keep on top of the doctors. It's your life that is at stake. Also let your wife know about this site as she may need someone to talk to that really understands what she's going through. Being a caregiver is probably the hardest job there is. Ranger what is your meld score if you don't mind me asking? If you have time go over some of the old postings titled liver transpant, ESLD or ammonia levels. They will give you and idea of what some of the patients have went through. Take care.
Posted 10/7/2007 10:05 PM (GMT 0)
Pink Grandma, my meld score is 16. That sounds like it is pretty low. But I don't know if that is good or not.
That would put me pretty far down on the list. My coordinator said that we were blessed in this state with donors, but I really don't know. i will continue to look at other sites to learn as much as possible. I have noticed a big change in the past couple of months, as far as energy levels. And it seems to be alot harder to get going in the morning's. I don't sleep as good as I used to, sometimes only about 4 or 5 hours a night.
Posted 10/7/2007 10:13 PM (GMT 0)
HI to all: I came to the site today to ask about cirrhosis patients craving sweets. My question was answered after reading these posts. It seems to be the only thing he wants to eat these days.

My husband seems not all there lately and the episodes last longer. At first it would last a couple days and then he would be himself again. Now it seems to last for days, maybe weeks. I really miss him. He has always been an intelligent man that could always get things accomplished but lately it is like he is a world of his own. He has trouble figuring out how to do little things that before were no problem. Will there be days that his mind will be clear again or has something progressed?
Posted 10/7/2007 10:14 PM (GMT 0)
I am very sorry to find out about your husband and his battle with this disease. My prayers are for you and your loss. I will try my best to stay on top of all the tests so as to not miss anything, now that I have heard of your experience. My wife will be checking in to see what she can find out from many of you. She read what you said about it being a very hard job. I am very blessed and lucky to have her in my life.
✚ New Topic locked
123