Hello On_hold and welcome to HealingWell. Sorry you had to come looking for us but am glad you found us. The liver disease ride is no joke....... as you see.
We have quite a few educational threads... please read over them. They can be very useful to people trying to found out some of the why's and what fors that go with this disease.
Do they have your wife on antibiotics? Probaby so with her having had a paracentesis.
My husband experienced siezures and even a minor stroke. I believe it's because the blood gets too thin. They gave him Keppra to stop the siezures . And he starting have blood transfusions every so often when his blood count got too low.
Encephalopathy does change a person's behavior. Even knowing that it wasn't really my husband.... that it was the disease it was hard to deal with so frequently. I took a lot of walks to calm down. I only had to call the ambulance once though but that was enough. Along with the ambulance, I had about 3-4 sheriff cars in front of my house. The 911 dispatcher asked me if he was violent and I had to tell her yes....but he didn't know what he was doing......he was sick. But as soon as the paramedics started to talk with him .....he became very docile and went calmly with them. (I had been dodging swings trying to get his shoes on and get him to the car.)
Anyways hang in there......this forum was a God send to me when I was going down the road.......
Thoughts and prayers.........
Welcome to the forum On-hold.
I’m sorry you and your wife are going through this. But I relate to so much of your story that I must say, this is no time to be passive. I’m simply reading between the lines. I’m going out on a limb here and I would like to apologize in advance if you think I’m completely off-base. My heart goes out to you. You sound hopeless. You haven’t told us . . .
o What liver disease your wife is suffering from
o What age group she is in
o Whether or not she is a transplant candidate
o What her MELD score is
But based on what you’ve relayed and what you haven’t relayed, here is a little “tough love” . . .
Hospitals are notoriously understaffed. You need to expect this when you arrive. It is up to you and those who love your wife, to bring focus to her needs. The only way to do this is to be there, or have someone with her, 24/7. Have patience, but not to a point where your wife is uncomfortable. Don’t dwell on how it should be, just work with what you have.
The Hospice representative is annoying to you because you don’t believe it is time to throw in the towel. She is obviously assuming the worst and wants to help you through this difficult time. Don’t hold it against her. It’s a difficult job for her and she may feel you are in denial.
You need to trust your gut! No one knows your wife better than you do. If you think she will pull through this, then you must get in there and fight for her. It’s time to pick yourself up and realize who’s the boss. You pay the bills. If your wife is in need of a wheelchair, call the case manager and insist on getting one! Don’t be embarrassed. Be the squeaky wheel. She needs you to speak for her! If you have issues with money, dial 211 for United Way. They should be able to assist or direct you with medical equipment needs.
Vocalize what you have written to us. The nurses understand because they are living it. They don’t want to give your wife poor service; they were placed in a position where they cannot be in 10 places at a time. Make friends with them when your wife is in the hospital. Good nurses will prove to be your greatest allies. Make it personal. Let them feel how much you love you wife. They will come to bat for you if you do this.
Did you know that your wife may be eligible to have her MELD score increased by a 10% mortality equivalent every 3 months for having Hepatic Pulmonary Syndrome (HPS)? The hepatologist would know this and should be fighting for it. If she is listed on a waiting list, ask if the transplant team requested this exception before the UNOS (United Network of Organ Sharing) board. In the meantime, it is important to maintain her oxygen level at >90. Also know that HPS can be reversible (if not too severe) with favorable survival following liver transplantation,
I hope I haven’t offended you. I just want to reinforce your rights. Get the facts, learn all you can about your wife’s disease, then use this information to fuel a fire under the doctor’s butts!
I will be thinking of you and hope you accept this information in the spirit it was given. Good luck to you my friend.
On-Hold, welcome to the forum. You are very articulate in stating what you and your wife are going through. You will find people here who are going through the same thing, or have. I agree with Penny: You need to be an advocate for your wife.
After a seizure, the person goes into a post-ictal state. That is what you describe as "living, breathing" but "not there." The patient has no memory of the seizure or what went on during it. They normally sleep for awhile after the seizure is over.
Weakness is part of the disease. I am also interested in what type of liver disease your wife has and when she was diagnosed, as well as her age and whether she is a candidate for transplant. This information helps us better understand what is going on.
You will find the educational threads very informative, and you will also find the people here to be very supportive and understanding.
Hi, On-Hold. Thanks for the personal info. You seem to have an awesome memory. That's a bonus.
It's most likely that your wife contracted HCV during the transfusions. It's possible that it was transmitted during snorting coke, but the transfusions are more likely as they did not start screening for hep C until the early 90s. Smoking cigarettes has not been implicated as a possible means of transmission. It is a blood-borne disease.
I've had that happen, too, in the hospital where the nurses are loud and laughing at the nurses' station late at night. They just forget that there are patients nearby who are trying to sleep. Then the phlebotomists come around at 4 AM to draw blood!
Hang in there and continue to read and post. You will find a lot of caregivers here who can relate to all you are experiencing.
Post Edited (hep93) : 3/16/2009 1:38:34 PM (GMT-6)
Thank you for sharing your experiences so articulately. I believe it helps to explain what we're going through. It also helps others to realize that feeling "on hold" or just tired of the sadness of this disease is very human. I have been coming back to this forum for about a year now. Many times it has helped to put the "wind back in my sails."
Post Edited (hep93) : 3/16/2009 1:44:36 PM (GMT-6)