end stage liver failure

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jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 5/18/2007 8:38 AM (GMT -7)   
Hi I am new to the forum, Just found out yesterday my mother has end stage liver failure. I am so lost and confused right now. They have started her on the Lactulose 30 cc twice day. She also has hep c from a blood trans. 30 years ago. We see her doctor again on this coming Monday to find out our options. I am not a match for living transplant, neither is my brother. sad Just don't know what to do right now. She seems to be taking the news pretty well, but stays in her room most of the time. My mother lives with me, my live time partner, my brother who is also ill and our 13 year old daughter. Any adivce on food and how to keep her comfortable.
 
Thanks a bunch
jamiesota

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 5/18/2007 2:05 PM (GMT -7)   
Hello Jamiesota and welcome to healingwell. First of all I am so sorry about your mom. This is going to be a long hard journey for everyone. Has your mom be evaluated for a liver transplant? Ask her doctor to refer her to a hepatoligist to get evaluated if she hasn't. They can get her on all the right meds she needs. And it's alot more than the lactolose. They also can give you a diet plan for her. Each doctor has their own idea about what a person who has liver damage should be eating. Some say high protein others say low protein. All I know is that she needs a balanced diet with poultry,fish,beans,nuts, milk products etc as the protein. Try to stay away from red meat. That's the hardest for the liver to process. My husband with told to take a multivitamin without iron, along with vitamin A, zinc, magnesium, and calcitriol as well. It was easier for him to eat alot of little meals aday verses the 3 traditional ones. And you know she should not drink even a drop of alcohol as it will damage her liver further.
Watch for swelling of her feet/hands and abdomen. If any of that starts happening she may need to go on diuretics to keep the swelling down.
There's alot more to learn about it. There are good websites to look on for hepatitis and end stage liver disease. Google them. Get educated and stay on the doctors. Everyone on this forum is very knowledgable about the many forms of liver disease. They will start jumping in with their knowledge shortly. My thoughts and prayers will be with you. Take Care of your self too. Pink Grandma

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 5/20/2007 7:24 AM (GMT -7)   
    Thank you so much for the post and to the ones who have sent me e-mails, all of them have been comforting and helpfull. Please excuse my spelling errors. Today is Sunday May 20th, we see the doc tomorrow. For the past couple of days my mom has seemed like her own self. Which has been nice to see. Now my family is worried about me, as I worry about them. My brother as I have said in my last post is also ill. He has hep. C also, schizophrenia and Insulin depentant diabetes, that was caused from one of his meds he had been taking. I guess why I am taking it so hard is my mom has only been back in my life for about 9 years. She would not speak to me after I came out. We are now closer then ever and she loves my partner that I have been with for 16 years. We lost so many years in there. Our 13 year old daughter does understand death but is worried that her mama is so sad.
    No she has not been evaluated for a transplant yet. We I first had to tell her the news she said she didn't want to go though all that hassle, but now I think since we have been talking she is at least willing to listen. We have friends with her blood type who are standing in line if she needs blood and to donate 1/2 of there livers if she can have it. But sadly she may be to week to have it done. Her doctor did say something about having to drain her belly for the fluid build up. Thank you all for listing for my rambles, I need to get busy around here. If anybody wants to msg me on yahoo or MSN feel free to do so.
 
Thanks again,
jamiesota
 
 
 
 
 
 
 
 
 
 
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/22/2007 8:34 PM (GMT -7)   
Welcome, jamiesota! Be sure to let your mom know that there is now treatment for hep C. Depending on how sick she is, that would be a first option. She may also be eligible for a transplant. Please keep your mom's visit to the doctor next week. Is the doc a hepatologist?

Your mom may be feeling both fatigued and depressed, which may be why she is staying in her room. She is probably also trying to sort out the recent news of Hep C.

As Pink Grandma said, learn as much as you can about liver disease.

Also, keep posting here!

Connie

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 6/10/2007 10:33 AM (GMT -7)   
Just wanted to give you an update on my mother, We have now gotten all the paper work for a transplant and to see the new doctors at the Mayo. She is doing pretty well right now, sleeps alot but guess thats just part of it all. Thank you all again

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/11/2007 7:21 AM (GMT -7)   
Jamie, I'm thrilled your mom is going to be seeing Mayo docs. I have hep C, which led to a huge, cancerous liver tumor. They literally saved my life, though I didn't need a transplant. Please keep us posted. And yes, sleeping a lot is part of the disease.

Hugs,
Connie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/11/2007 8:17 PM (GMT -7)   
Jamie I am happy that your mom is doing better. And that she's gotten the paperwork. I know it is alot to digest but it will be worth it in the end. But do take care of yourself too. It was the hardest job I ever had.. was to be my husband's care taker. It was very stressfull. But if you have any questions at all please come back and ask. I and others have been there and done that so we may have some useful suggestions for you. Just remember to keep on the doctors and if they say that she needs any testing done monthly or every 3 to 6 months it's going to be you and your mom who have to make the appointments or make sure that the doctors orders them when they are needed. You also have to make sure that the preauthorizations are gotten before most of the tests. Doctors and their staff drop the ball on those kinds of things alot... is what I have learned. You will be your mother's advocate and don't be afraid to exercise her rights to good health care. :-) Thoughts and prayers.......Pink Grandma

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 6/17/2007 6:37 AM (GMT -7)   
Good Morning,
 
   Just a quick update, think my mom taking to her transplant cord. has put her at some ease. She was worried a lot after reading the paper work about rejections. The recovery time and so on and so on. Some times I think they give to much info LOL. She is worried about the cost and all of the travel. We live about 4 hours from U of M Medical Center FairView. And will have to stay there during all of the testing. And doing alot of wondering about living donors, could be some of our family could be donors but all live down in Okla. and they say they dont have the insurance that would cover it, whos insurance pays for it all if a live donor is used? confused   She did make a funny comment yesterday, we were sorting though stuff for a rumage sale for our daughters 4-H club, and some of her pants that dont fit. She looked at them and said nope I am going to keep them becasue after my transpalnt the swelling will be gone and I can wear them again. I thought that was very positive of her. tongue Oh and yeah we are now the proud  family of two little fillys. First one was born the 2nd and the other the 8th. Thanks again everybody.
 
jamie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/17/2007 3:54 PM (GMT -7)   
Jamie, I'm glad to hear that your mom is sounding more positive! After the surgery for excision of the right lobe of my liver, I lost 10 lbs w/o even trying...mostly fluid, I'm sure, but the swelling has gone down. Doc says that a little remains.  I told him some is belly fat!  LOL!  The Mayo Clinic in Jax has a charity program, which approved me on a year-to-year basis. You have to submit records of income, bank statements, etc., to see if you are eligible. My primary insurance is Medicare. Secondary is Medicaid Medically Needy, and then the charity program picks up any balances not paid by the insurance. I am sure Mayo Rochester must have the same program. They don't advertise it or even tell you about it. I happened to see it on their web site and applied at their financial services office. If your mom has any large investments, IRAs, savings, etc., now is the time to have those closed or signed over to you. And sometimes you just have to deny that anything has been sold or transferred. I don't feel guilty about a fib when your life is at stake.

Medicaid pays for transplants, though I am not sure about a living donor transplant. Please keep us posted! OH! When I was there on Fri., I was reading a Mayo publication which noted that they have a ONE MONTH wait for transplant. (I'm guessing this is after being placed on transplant list.)  I am not sure if this is just in FL, or if it's true for all 3 Mayo clinics. I will try to find that publication tomorrow while I'm there for blood work, to check this out. Sure, the info they give about transplant complications is scary...but they are obligated to tell the patient of possibilities. I ask them for percentages.  At any rate, I think your mom will find she will get a transplant much sooner than expected.

Hugs,
Connie

Post Edited (hep93) : 6/17/2007 4:58:28 PM (GMT-6)


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 6/17/2007 7:21 PM (GMT -7)   
Connie,
Thank you so much for your reply, I will have to check on that program, my mom is also on Medicare and MN Medical Asst.

Thanks again,
pax,
jamie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/18/2007 11:34 AM (GMT -7)   
Jamie, please do check out that program. I went for blood work this morning. I did not see any of those magazines. People take them home, as they are free. Nevertheless, I'm sure that the transplant wait is not very long at any Mayo Clinic.

Best of luck to your mom, and may God give you the strength to handle all that lies ahead, whatever it might be.

Hugs,
Connie

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 7/5/2007 2:30 PM (GMT -7)   
Good afternoon,
  My mom is now waiting on her testing, but just saw her doc. her toxin levels are at 169. He didn't say what her liver levels are at, just that they are high. We have been watching her pretty close and now have stopped leaveing her alone at all. Even with the meds she still seems so lost and confused. I have even made her stop smoking in her room, I don't trust she wont fall asleep, we have also cut her down on the amount of soda she can have and her proteins. At times I feel like I am being really mean to her. She sleeps alot and that I know is normal, but seems to be she has her days and nites mixed up. Any ideas that can help me out a little more I would love to hear.
Thanks again,
Jamie eyes

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/5/2007 9:43 PM (GMT -7)   
Hello again Jaime, It's very common for liver patients to get their sleeping patterns all mixed up. My husband was afraid to go to sleep at night. He was told by his GI that he would just go to sleep one day and not wake up. Boy was he full of bull. That doctor needs his license yanked. They gave my husband Trazadone to help him sleep. But he wouldn't take it very often.
If you can get your mom to stop smoking before her transplant that would also help her recovery go easier. Where my husband was listed it was part of the don't's. He could not be listed if he smoked. I guess each tranplant hospital has their own set of rules. Take care :-) Pink Grandma

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 7/6/2007 7:34 AM (GMT -7)   
Pink Grandma,
  Her paper work says she should stop but does not say she has too. Yes it says recovery will go better. The hard part is watching her be so sick. Dont remember if I said it in former replys but she also had 2 strokes about 4 years ago. She just wants to stay in her room and watch tv not realy doing anything.  And knowing that my brother who has  hep c, schizophrenia and is diabetic  watches this knowing that all this could happen to him. Knock on wood all of his test of late have come back normal. I feel so lost that I cant can't help either one becasue of our blood types. Go figuare I would get my dads and my brother is AB+, and our mom is O. Also what is hard is knowing we live 4 1/2 hours from the hospital and and hour away from the nearest airport. Should we look for a place closer to the hospital, When the time gets closer? She gets bruises easy and they bleed, she picks at sores on her face. We all are realy careful when handling and of her clothing with blood on it. I realy think if I was not pushing for her to have this she would just give up and die. At times it wears me out see I also have fibromyalgia and ostoarthrites I am almost 43 and have had both my knees replaced. Ok seems like I am just whining now so I will close. Hope all have a wonderfull day.
 
 
Thanks again,
jamie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/6/2007 9:10 PM (GMT -7)   
Hello Jamie, It's funny I also have Fibro. It kicked in right after surgery and right when my husband started showing symptons. I believe stress played a huge part of my Fibro. Now that my husband is gone my fibro symptoms subsided alot. Probably most caregivers feel helpless. Only certain things are in your control. Most of the control is held by the liver patient. You can take them to all their appointments and give them their meds everyday but it is mostly up to each patient to do everything possible to stay alive. I did what I call double back flips for my husband but in the end it is what he didn't do early enough and what some of the doctors didn't do early enough either that caused him to lose his battle. You can lead a horse to water but you can't force him to drink. That really applied to my husband when he first got diagnosed. Until he start having symptoms he did not do follow any doctors orders.
When your mom goes to her transplant evaluation they should have alot of literature on what she and you need to do. It should tell you the length of time from when you receive the call for the transplant until you get to the hospital. I think we had 2-3 hours to get my husband there. But each transplant hospital has their own rules. I can not stress strong enough....stay on top of the doctors. Have a tablet and write down everything they say needs to get done. And remind them when tests are do. Call them for all test results. I had our lab faxing me his blood work results every week. Don't wait for them to tell you. Remind your mom's primary care physician to get the prior authorizations when needed. I was on first name basis with alot of the medical staff that were part of my husband's care. Doctors and nurses are human and make mistakes too. Don't be afraid to assert yourself when needed to get things done. Also get very educated about any problem your mom is experiencing. Google it ...I learned more by googling than from all of his doctors put together.
Bruising is part of the illness, itching is too. The picking of her sores may come from pain meds if she is taking any. I have one more thing to say before I step down from my soapbox. It is extremely important for you to take care of yourself also. You can not be any good to anyone if you end up sick yourself. I know it is alot easier said than done, but try to take sometime for yourself. Even a few minutes a day is better than none.
And don't feel bad about whining. We all have our days. You can whine and I'll bring the cheese and crackers. Our family here at healing well are good at listening and trying to help.
My thoughts and prayers are still with you both.
:-) Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/6/2007 9:25 PM (GMT -7)   
Hi, again, Jaimie! In recent trips to The Transplant Center, which is where I am seen, I've talked to a number of people who are waiting for a transplant or have had one. It seems that the wait at Mayo is one month. Of course, that does not include the pre-testing and wait time to get on The List. Everything they do--blood work results, visits, etc., goes into the computer and can be accessed by other doctors and other workers. I love that they share info, and really do keep a watch. I often make appts. by phone, but they are followed up by a typed schedule. I would say they are very much on the ball, but do ask questions. Also, they do not rush you, but take whatever time you need to discuss the patient's condition.

All of Pink's suggestions are good. Basically, you have to be proactive.

Hope to see you post again soon!

Hugs,
Connie

crazzymadwitch
New Member


Date Joined Jul 2007
Total Posts : 2
   Posted 7/7/2007 4:59 AM (GMT -7)   
Please excuse my spelling errors, i have had stoke and 2 heart acttacks but my self am doing well.......... I am new to all of this now
i have with me my friend of 33 years staying with me with 5% working liver . I am so lost and confused right now. about all this we go back many years we are souls mates but he always wented to live a faster life then me now he is paying for it he has hep c and liver failure which we didnt find out till he almost died eatting ice cream one nite but i knew some thing bad was wrong from the eye yellow and i mean yellow he was hiding in hawai so people would think he was tanned, which is some kind of joke cause yellow not looking tan to any one only one he`s fooling is him self
the drinking stopped not a drop since he``s here which is good they saybut if any one can tell how do i get him to eat food i know he has to eat low protien the most i can get in him is a slice of cake at lunch time
in the 5 years i didnt see him he spent all his money(DRINKING) he is waiting for med covage to kick in and just ran out of the pills from the ER i know how hard it is when your body lets you down i dont know if i can keep him here with me it sound like this is going to get pretty bad let me know people what am i in for here i love this man i love what left of him i want to help him the best i can what best for some one with failing health like this thank you all i hope to get better at getting my point out

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/7/2007 7:33 AM (GMT -7)   
Hello crazymadwitch, welcome to our forum. Boy you must be a tough cookie to survive 2 heart attacks and a stroke. Yes it is a very hard road to walk and sometimes crawl. Does he or you have any family that can give you a hand? With your past medical history this maybe more than you should be taking on. He needs to start helping his self to survive. Cake alone is not going to do the trick. I had to get tough with my husband sometimes and force the issue (whatever it was at the time) to try to make him follow the doctor's orders. I wasn't above trying to make him feel guilty as hell for not complying. I used our granddaughters as the reason for him to survive. But in reality it is really up to them to do it. It comes down to how bad do they want to survive. There's alot of help from different agencies out there. You need to ask his doctors or nurses or google it. What kind of meds is he on? What state are you in? There's people on this forum from everywhere and maybe someone is in your state and can give you some suggestions. Take care and my thoughts and prayers will be with you both...........Pink Grandma

crazzymadwitch
New Member


Date Joined Jul 2007
Total Posts : 2
   Posted 7/7/2007 1:39 PM (GMT -7)   
thank you for answering pink grand ma we are in ny brooklyn since this is so new to me i dont know where to start meds are where i should say pentoxifylline every 8 hrs then nadolol, pantoparazole,cipro,thiamine folic acid, multi vitamin and some cream for the pocket of blood under his skin nystatin triamcinolone he has no family never had kids i my self have grown sons that thank i am nuts thank y theyve give me this name lol, thank you for the prayers we really need them most i feel rigth need i guess if some doesnt want to live then all you can do is make them comfortble and deal with it off hand can them take any thing for pain that wont kill them like on the spot
i know not to give him tynoel he teeth are falling out one at a time
no denist will work on him with out medicaid card that he waiting for he worked all he life this is so hard for him not many people knew he drank like this the last good job he had he quit after the wtc came down he drove meat dliverie truck that med run out when he moved out of state ive never had to do any thing this hard in my life thank you for all your help people god bless all of you

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 7/23/2007 11:23 AM (GMT -7)   
Good afternoon,
 
    Sorry for my delay in writing back, my moms toxins went high and we had to get them bck down again, amoung not letting her do stuff like use the stove or other things that she would get hurt doing. We did get a call on Friday that the 29th of Aug. we will be going down to the cities for her evaluations. Wish us luck, also in the mean time we have come up with at least 2 to 3 possable donors for transplant if able to go that way. hope all is well .
 
jamie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/23/2007 10:13 PM (GMT -7)   
We understand..........and good luck at the evaluation. Pink Grandma

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 9/1/2007 6:40 AM (GMT -7)   
Good Morning all,  confused  
  Sorry it has been so long since I have written, live gets crazy around here. We my mom and I just got back from seeing the transplant doctors. Very confusing time.I think my head was spinning the whole time. Also please forgive my spelling errors. I now know I need to have alot of words with the doc here. They asked me what hept c virus strand she has, no clue. But we did get some good news and some bad news. Good news is that she has a way to go before needing a transplant. Her count was a 10-11 needs to be 15 at least of liveing donor and 28 or above for a whole liver. But just with out taking her lactalose for one day her toxin levels went up to 118. But I guess there is a new med out for that, and it does not have all the side effects. has anybody started useing it yet? Her EKG didnt come out so good, and her pulmonary function test didnt come out so good. I read the results when we first got them, but didnt get them when we left. She has a couple of sever things wrong with her lungs. And yes if you remeber she is a smoker, but I now have her down to between 4 smokes to 1/2 pack a day, pretty good from two packs a day. The gastroenterology doc wanted to know why she has not been in for a mamogram, upper and lower GIs. Why she had no has the Hep B shots. They found cyst in her liver and both kidneys. Everybody there was so nice and helped out so much. I need to call her transpalnt cord. to have copies of her files sent to us also, so I know more what is going on. They other good news is the socail worker did tell my mom the same thing I have been tellling her, she cant just sit in her room doing nothing, her musecls are getting weak because she does not use them. So now we are going to make her start doing some walking. We used a driver to take us and she could hardly get in and out of his van and she is only 64 years old. My brother sees the same doc here and wondering since he had now ran test on my mom should I ask him to do them on my brother or just start looking for a new doc. Anybody has any questions I do have all her lab work test with me. So i should be able to answer. But before life start this morning thought I would get this in. Hope all is well.
Peace,
Jamie

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 9/4/2007 4:12 AM (GMT -7)   

hi everyone, sorry i haven't written in a while...ex husband is faithfully attending his aa meetings, just trying to do the right thing so he can get on the donor list? he's actually a little more aware of his illness and actually tries to help himself. thats a big step from a month ago.  hi pink grandma and connie and amy!!! i am reading your posts all over the boards and we are all so lucky to have you ladies to turn to!!!   jamie, i just read your journey of the last 3 months and you and your family have been through so much, i hope everything works out for your mom....keep us posted.

paula

ps jamie --my ex is in the process of trying to get on list for liver--dr said he must go to aa for months! what is next? can u please shed some light on how this works?


Post Edited (paula1965) : 9/4/2007 5:15:16 AM (GMT-6)


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 9/4/2007 2:16 PM (GMT -7)   
Paula,
 
   Has he been evaleated by transplant team yet? If he hasn't pretty sure that is the next step. Also make sure he has a TB test, tested for antibodies for Hep A and if has not had his Heb B set of 3 shots. He should get that done also.
 
Jamie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/4/2007 10:31 PM (GMT -7)   
Hello Paula and Jamie, Paula before my husband's eval he had to have done the following done locally (per our insurance) and have all results faxed or brought to them for the eval.
1. EKG (heart)
2. ECHO with Doppler (heart)
3. Persantine Thallium (heart)
4. Endoscopy with banding if needed. (varices)
5. Colonoscopy
6. Pulmonary Function Tests ( lungs)
7. Triphasic CT scan of the abdomen,pelvis and chest
8. TB skin test
9. Blood work (they may give you the orders to give to your regular doctor).
The hep A and B shots were done later.

The eval took over a day and a half of meetings. We talked with a transplant coordinator, a hepatologist, a social worker,a pyschologist, a dietician, a surgen, a financial coordinator and a group meeting with other transplant hopefuls and transplantees. It was very exhausting. Alot of info to digest and to come to terms with. Your ex got a head start on the AA. That's good. My husband was turned down the first time because of needing to lose some weight and needing to go to AA. (He had already quit drinking on his own over 2 years before.) But they still required that he go. Hope this helps. T and P Pink Grandma
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