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Lost_in_Maine
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/1/2007 2:05 PM (GMT -7)   
Hi Folks this is my first post to the group
Been a long time since I been on IRC, but have lost track of
servers/channels where there are some Hepatitis Chat rooms..anybody
have some type of list, or URl I can go to thats current?

I am HCV positive myself,but doing well
but my wife has cirrhosis, very high ammonia levels,
and the encephalopathy is rapidly getting worse...
It is getting very stressfull, frustrating, for me...she yells in her
sleep all night, and is hullucinating non-stop...just need somebody to
talk to some nights for support. She was in the hospital last week for
4 days, they stabilize her, then just send her home..
She is now rejecting any help I try to give her, saying I'm running her
life, and she has seemed to have given up the will to live

Surely, Lost_in_Maine

Post Edited (Lost_in_Maine) : 1/1/2007 3:07:05 PM (GMT-7)


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/1/2007 5:00 PM (GMT -7)   

Hi lost in Maine, welcome to HW. Sorry to hear about your wife. My husband has encephalopathy, pretty bad at times too! He is taking lactulose and also on xifaxan for it. When his gets bad it is usually from an infection. Does your wife have a hepatologist following her? My husband was just released from the hospital on Saturday, he visits it frequently! I am not sure when the chat times are for this forum. I usually don't use the chats. Have you or are you considering treatment for the Hepc? Just keep coming back as there are others here on the forum with the same problems we face.

Teresa


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 1/1/2007 9:47 PM (GMT -7)   
Hi Lost in Maine.
May I welcome you as well. We have tried a hepatitis chat here on a few occasions but with little success. Trish (wheredidigo) is the Forum moderator. She may like to try again to find a time that suits most.

It is nice sometimes to chat to someone who understands.

Take care.
Marg
 


Lost_in_Maine
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/2/2007 1:06 AM (GMT -7)   
TDT said...
Hi lost in Maine, welcome to HW. Sorry to hear about your wife. My husband has encephalopathy, pretty bad at times too! He is taking lactulose and also on xifaxan for it. When his gets bad it is usually from an infection. Does your wife have a hepatologist following her? My husband was just released from the hospital on Saturday, he visits it frequently! I am not sure when the chat times are for this forum. I usually don't use the chats. Have you or are you considering treatment for the Hepc? Just keep coming back as there are others here on the forum with the same problems we face.

Teresa


Hi Teresa
My wife takes the same, Lactulose, and Xifaxan, but will not take it on her own...now she refuses to take anything I try to give here...She has been very de-hydrated, and renal functions are way off..She has an appt this week with the gastro, but she cancels appts, and is in denial of how sick she really is.....Its been another night of her talking, and thinking there are people in our house, along with the fits of rage, it is getting un-bearable
Yes, I have been on treatment three-four times but never cleared hcv....
I am really considering going to the courthouse in the am and see if I can get a commitment order or evaluation on her...she is out of control...nighttime is the worse...this is why I am up @ 3:00am
Doug

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/2/2007 10:40 AM (GMT -7)   
hi lost in maine, i just went threw this with my father who had cirrohiss, but we didnt know he had it untill july of last year and he was 88yrs old. sometime his amonia levels whould just go up and without worning it went as high as 325 that was a coma state, but with your wife not taking meds and refusing them thats most of the battle. you should get her evaluated.
my thoughts are with you, i know you will do the right thing. its a full time job i know. when he was home it took at least two people to take care of him, when i put him in skilled nursing they had a hard time as to how to give him his lactulose and some times he would refuse it to. he did his best when he was in the hospital as skilled. my fathers age was his down fall, but he was a fighter. his wasnt my husband or wife going threw this but it was just as hard watching my father go down hill fast, i wasnt used to him being sick, his mind was as sharp as a tack. i normaly look at the forum two or three times a day if thats any help to you i will be glad to listen. wish you the best.

myfathers child
annette

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/2/2007 11:09 AM (GMT -7)   

Doug, I really feel for you, I have been through that quite a few times myself!!! I don't blame you for wanting or doing the court order deal!! Especially since she is being non-compliant with her treatment! There is usually no one that understands what we are really going through for hours and even days when they are like this. It drives me crazy too! Does she have a chronic infection, maybe? After several episodes of this with my husband they found he has a chronic infection of the prostate, so now he is on a long round of antibiotics (levaquin) again. He is acting normal for now. The thing is they cannot be left alone when this is going on and they will not take their medicine when they are like this. My husband takes his medicine without a problem when he is himself. Electrolytes being outta balance can also cause these episodes. My husband has also had the renal problems like your wife, they had to find the right diuretic combination that was easier on his kidney's and he still had problems with ascites. They did a TIPS procedure, which at first did not take fluid off, the fluid actually increased. It did finally start working and he has lost 49 lbs. of fluid in less than a month. He went into a tailspin with this, but they found the infection was the culprit of the encephalopathy. Bleeding varices can also cause them to have the encephalopathy, he does not have problems with varices. I don't know if I am helping you any but I really do know what you are going through, it is very exhausting and emotionally hard. This last time I was talking about sending him into respite care, his doctor really didn't want this as he would be around too many germs in the facility and he is up for the transplant at anytime now. How long have you been going through this, and is there anyone that can help you get a break from this? Good Luck with this, I will be looking for you. Oh yeah, they have a new drug that should be coming out pretty soon for non-responders on the HCV, it is suppose to be easier on the body, it is still in the trial phases, but looks very promising.

((((((Hugs))))))

Teresa


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/2/2007 8:17 PM (GMT -7)   
Welcome Lost in Maine. Sorry to hear about your wife. But you definitely are not alone. There's plenty of us here on this forum in the same boat. Somedays that boat seems to be sinking and other days it's sailing okay. I too understand about going to the courts. Some days my husband doesn't want to listen to anything I have to say, especially about his meds. We just got back from his liver Dr last Friday and I had to write down all the changes to his meds. He wouldn't believe me until I showed him my notes. And he was right there listening to the doctor. It does get very frustrating when you are doing your best to help and not being even remotely appreciated for all your efforts. He thinks I am trying to kill him. It's exsaulting fighting your loved one when your just trying to do what the doctor has ordered be done.

Well Doug hang in there .........You have a lot of people pulling for you and praying both your wife and yourself............Pink Grandma

Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/2/2007 11:43 PM (GMT -7)   

Doug,

As others have said, I am very sorry for what you are going through. I have been a caregiver to my husband, who has alcoholic cirrohsis, since late August. It is a living hell.

You are right about nights being worse, but I don't know if it's them or us. I have far less patience when I am being awoken every hour at night for toileting, confusion, general conversation, the room's too hot or too cold, whatever. Whenever the same behavior presents itself during the day, I have much more patience.

You need help. If you don't have power of attorney, then a court ordered intervention sounds right. If you are low income or a veteran, you may be able to get gratis legal help from the state or federal governments, or from a local law firm that does pro bono work. The legal firm might also be able to pro bono assistance in getting your wife signed up for social security disability, if she qualifies, although that can be a tough row to hoe.

Have you thought about Hospice? They will provide help for end-stage liver disease even if you cannot afford to pay. If you belong to a church, you may be able to get volunteer and respite care from church members. Is your wife on Medicare? After 3 days in an acute care facility, she should qualify for home health care or a skilled nursing facility. Talk to her discharge social worker at the hospital she was in to see what sorts of resources they can send you to.

Sometimes other caregivers can get further with a patient (in terms of calming them and getting them to take meds) than can a spouse.

Do you belong to any social clubs or civic organizations that will "grant" you money to hire a private duty caregiver a couple nights a week?

Don't be afraid to ask around for help. People want to help when they know there is distress, expecially extreme distress such as yours.

Neighbors? Friends? Family? Even if it is only to bring in meals. She needs a low-sodium, low-protein diet, and maybe those persons can't cook to those specifications, but at the least, you need to stay as healthy as you can to care for her. You can likely talk with a nutritionist at the hospital she was in about her dietary restrictions.

Talk to her doctors. Let them know how bad the mental confusion is. They may be able to adjust her meds, or like a social worker, send you to resources to help.

I don't want to make this all about her, because I can tell how much you also are suffering. I know I've outlined a number of steps that will be exhausting to pursue, but in the long run, they may help you (personally) alot. My thoughts are with you. Take care.

 

 

 


Venita and Jim
Wlmington DE

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 1/3/2007 5:33 PM (GMT -7)   
hi lost in maine
Id be happy to get a chat together for this forum! Anyone with special times they cant do a chat,email me ,,Ill try to coordinate a time for everyone. Sorry your going through this with your wife,I too am a caretaker to hubby,,,,,,,and yes its a rough battle,,,,,,,more later......hes calling :sigh:
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 

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