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Old 11-29-2006, 12:26 AM #1
gambles gambles is offline
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Default Has anyone ever seen someone die from liver failure??

I'm sorry to ask such a difficult question, but I don't know where else to turn. I used to sign on here all the time way back when for my pain issues.

Now I desperately need to know what to expect. My husband has been fighting liver cancer for four years. They have run out of things for him to try. He seems to be going downhill VERY rapidly.

I'm going to be VERY specific about his condition so that if it sounds familiar to anyone or if anyone just know someone/someplace else I can ask, please let me know that too.

In Sept. he was working and doing everything normally. He actually had a coworker who commented that he couldn't really be sick because he looked so healthy! Then after four years of nearly continual chemos and surgeries, he had a chemo embulization which make him very sick. He has been running a fever since Sept! He also started coughing at that time.

In the past 2 weeks he has had three blood transfusion since his hemoglobin is in the toilet. They dont' seem to take.

In the past week, massive pain, exhaustion (he sleeps almost 20 hours a day and can barely walk from one room to another) he can't eat or drink. All he is getting in is force fed Ensure which will obviously just make him weaker.

Today, he face got all yellow. I know that means the healthy liver cells that had been keeping him so healthy for all this time are failing.

I need to know what to expect. I can't ask the doctor with him in the room. He hasn't given up and I don't want him to know that my hope has run out in the past few days.

I need to know if there is a common time period it takes for a liver to fail completely and what happens after that??

Somebody please help me if you can. I'm desperate. I know this is the wrong board for this post, but it used to be my board of comfort and I know nothing and can't find any cancer boards that are active.

Any little glimmer of information on the actual process of dying will be greatly appreciated. I don't even know if and when I'm supposed to take him to the hospital or if there is nothing they can do, do we just stay here.

My spinal injury makes this difficult because I can't physical stay at the hospital, and even be able to move the next day.

Thanks for letting me post. Even writing this helped a little

Suzanne
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Old 11-29-2006, 01:24 AM #2
rfinney rfinney is offline
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Suzanne,

My heart goes out to you. I find it difficult to even imagine what this is like for you right now. I wish I could provide what you want to know. I can't, but I have had some experience with this situation, and I will share what I can.

Background: I am a Clinical Psychologist by profession. I have been disabled due to chronic pain secondary to neuropathy for the past few years. While I am not able to practice, I had a fairly lengthy career during which I worked in quite a few different capacities. Currently, I am trying to write a little and have plans for a book - hoping I will eventually be able to manage that.

Some years back, actually about 10 I believe, I had a patient who had severe liver disease. He had contracted hepatitis B from a blood transfusion and was having significant medical problems. He was on a list for a transplant, but was not high enough on the list. He was told that it was not likely there would be a replacement for him if he neared death soon.

When I was first seeing him, it was an outpatient basis. He able to come to my office. But he did continue to get worse, and I began seeing him at his home - sometimes with his wife.

Finally he got so sick that he had to be hospitalized. While he still had some hope of a miracle transplant, he faced an increasing likelihood that he was going to die. He continued to move towards acceptance of that as he got weaker and weaker.

It was truly just a hellish nightmare for all of us around him, including me. But you know something - it was not exactly that way for my patient. Yes, there were times of huge distress with all the upset that you might imagine. But those times were the exception. Most of the time, he just wanted to be with those people who meant the most to him.

When he had the strength, he wanted to talk. It was clear that towards the end he had accepted death. I don't mean that he just resigned himself to it, but that he had made some sort of peace, uneasy at times, with not only death, but also life. He certainly wasn't putting on a good face - he was beyond that or even the ability to do that.

One thing that emerged was clear to me. I knew very strongly that he needed to be told that it was ok for him to die. That it was ok if he went because nobody needed him to be there for them - that this was just about him and that no one else's needs would be in the way.

His wife was also able to sense this. We talked about it, and she was able to spend some time alone with him to tell him how much she loved him and to say goodbye. After their talk, you could see a dramatic change in him. He had this peaceful, almost serene quality, perhaps even a kind of glow about him.

It was not that he wanted to die or that anybody else wanted him to die. He still knew that everybody wanted him to live, if possible, and get that dang transplant. There were still some difficult moments in the next 2-3 days before he passed on, but he had found as much closure to his life and death as he wanted or needed.

It sounds as if you are too much alone in this right now. I would hope you would be able to talk to his doctor - perhaps just you and his doc. You are entitled to get more information as to his condition and other relevant things. I think that you would also want to talk to religious and or spiritual people - if there any who know him, that would be ideal. But even if not, it could be very, very helpful - to you as well as to him.

I hope that you have positive relationships with members of his family. When everyone, or perhaps just a few, whatever is best, gets together and sits down, some things often get clearer.

There also might be some services available in your community that can be of use. Maybe they arrange for help with routine things that need to be done, or help you look into hospice if that is a possibility, or maybe other things.

And I just have to throw out the old cliche - you must take care of yourself if you are going to be there for him and be there in the way you need to be for yourself. I would suggest that talking to a therapist or other counselor would be very, very helpful right now.

I will hold a good thought for you both,

rfinney
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Old 11-29-2006, 10:40 AM #3
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I am very sorry you have to go through this. Preparing for your husbands death has to be horrible.
If the doctors have said there is nothing left to do then keeping your husband as comfortable as possible is what you want to do.

Have you contacted Hospice? They are a wonderful organization with some of the best nurses you will ever find. Your husband couls stay home and when his time comes--go in the comfort of his own home.

Get his docs to order Hospice if they havnt already--they are also there for you.
As far as the actual process of death--he will most likely slip into a coma as his vital organs shut down.

But dont let that stop you from talking to him as his hearing will still be working.
Play calming music in his room, pray with him or whatever else you know he likes.

As long as he still has hope--there is nothng wrong with that but dont be afraid to talk together if you think he will--that is where Hospice can be a big help.
You have to take care of yourself and can not be expected to do all his personal cares--so I hope you will quickly look into hospice care.

My prayers are with you.
Bubbi
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Old 11-29-2006, 02:58 PM #4
gambles gambles is offline
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Default Thank you both for answering me

You're right. I am very isolated. I do have my mother who is very close. That is really about the only constant though there are a few other preople (sister and one friend) still in my life.

I have lived in constant pain from migraines for 25 years. During that time I managed to teach for 14 years and had a very active life. Then I had a ridiculous trip and fall on a field trip that left me with spinal damage - both cervical and lumbar. Post surgery, I can finally sit up again, but the pain is constant. I pushed everyone away and basically in most cases they let me so now I am homebound with no where really to go anyway. I have gotten over the initial anger and depression, but I destroyed my social network and now I have to live with that.

Because of our health problems and not being neat freaks anyway, this house has become a pigpen. I know that shouldn't matter at a time like this, but the thought of a hospice nurse in here is mortifying. I know very little about hospice, but I guess I will be looking into it.

My husband is definitely not ready to quit. He has another chemoembulization scheduled on Friday if he is well enough. I'm expecing them to cancel it when they see how sick he is which will tear him apart because he is hanging his hope on this chemo gelatin balls surgically implanted shrinking his dozens of tumors back to a size which would make him a surgical candidate again as he has done remarkably well through all his previous surgeries. We also went through all the available experiemental treatments from a local cancer teaching hospital.

I have tried to tell him that whatever he needs and whatever he feels is ok, but I don't want to take him down a road he is still fighting against. It is very hard to balance. We don't even have wills since it is such a touchy subject!

He is also no longer able to carry my wheelchair and push me to doctors appts so I don't have access to his oncologist. We have been to many doctors and second, third, fourth, and fifth opinions, but we are back to his original oncologist who told us in 2002 he has about 4-6 months to live. We came back to him after the most recent oncologist told us he has 2 months to live on Sept 11, 2006. We did go out to dinner as a "Greg is not dead" celebration. Since then he has weakened dramatically and quickly. Until he started getting very jaundiced yesterday, I thought maybe if they could get his red blood under control he would get some energy back. Then I realized he has way too many symptoms of actual liver failure.

I also don't want to ask the hard questions when he could overhear me which is why I posted back here. The braintalk board used to be my life line when I couldn't sit up. I could actually kneel in front of the computer and feel connected. Lately my own pain has gotten worse and sitting here this long right now and even walking down the hall can be difficult. I have to choose between turning onthe computer, showering, or trying to come up with dinner. I simply can't do more than one in any block of hours.

Thank you both again for every single word you wrote. I will reread them several times and take everything to heart. and I'm also extremely excited to have found this pain board after losing braintalk. I'll have to work on making the computer a priority for my own sanity.

Thanks again,
Suzanne
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Old 11-29-2006, 03:47 PM #5
Curious Curious is offline
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((((suzanne))))

the people with hospice care are very very understanding. they really do know that other things in life when there is illness, are way more important that house cleaning.

i haven't personally had experiences with anyone going through what you and your husband are. my brother passed from cancer. he was at home with us.

being blessed to be with somebody you love so much in the end is hard to describe. i was very close in age with my brother.

one thing we did was let him be in charge. it was his life that was ending. who he wanted in the room....what he ate..or not ate. my brother had the most awesome sense of humor. he wanted a cherry coke slurpy. my mother was mortified. she said "you are going to get sick". he said" well it ain't gonna kill me".

making peace with their life and those who are in it very important. and very important for those being left behind.

with all the pain meds that are given at that time, hallucinations are common. my brother had no bad ones. it really helped him on his journey. us too.

body systems start shutting down one by one. if you have hospice they will help with this. our hospice nurse for some reason showed up the day he came home...and not again until afterwards. i'm not sure why. i think she thought that me and my sisters could handle it. it was best for my brother. he hadn't gotten to meet this nurse beforehand. i absolutly reccomend that. and i don't reccomend you try and do any of that type of caring. those are not the memeories you will want.

my brother delegated roles to my sisters and i. me being his little sister...i was there for his emotional comfort. and he giving me comfort. his death was devestating for me. 2 of my sisters were more of his carers. one sister coudn't handle being there towards the end. i was blessed to be on the bed with my brother holding him. i breathed in his last breath.

yikes..sorry...i didn't realize this had gotten so long. just remember hon, we are here for you.

post when you can hon. we understand about the pain. let us know how his dr's appointment goes.

my prayers for you both

Curious
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Old 11-29-2006, 04:05 PM #6
rfinney rfinney is offline
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Suzanne,

As you have found out, the board here has many caring and knowledgeable folks. You should use it as you see fit and how often as you want. There is no question that can't be asked.

I don't know where you are located, but many communities have paratransit services for people who are unable to get themselves to their medical appointments. Hoping you can use something like that to get to your doctor's appointments as well as talk to your husband's oncologist.

I think it may be relevant that all of us who have responded to you have mentioned hospice. I sure hope you can begin exploring that possibility. I do understand how embarrassed you are about the house - nothing unhealthy about feeling that way. I also hope that you will not let that get in the way of what is best for both of you - if it turns out that way.

It sounds like you have started the process of giving your husband permission to go, if that is what is to be. And as someone else posted, he is in charge of that. You are there for him and are creating the space so that he can choose what his beliefs are, knowing that he has permission to go anywhere he needs to and with whatever feelings come up as a result. There is no need to force things to go in any other direction.

Take care,

rfinney
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Old 11-29-2006, 10:04 PM #7
LindaM LindaM is offline
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Suzanne, Know that you have my heart felt sympathy to be going through all that you are.
I was with my Father in his dying days back in 1995 when he passed away from liver cancer, his actually started in his colon but had spread to the liver by the time it was found.
You have already gotten some very good advice here and I have to say that if not for hospice I don't know how we all would have dealt..
Although hospice will only step iin if a patient is willing to sign that they will not continue to take life saving measures such as chemo or anything that will prolong death and have a dx of 6 months or less.
I know my father lived for almost 2yrs after his dx of 6 months and they helped all the way and they will no matter how long you may go on as long as you agree to theyr terms.
My father after trying chemo and other methods said he rather live life without all the side effects he was getting from those methods and hospice took really good care of him and keep him as pain free as possible and supported us all through it all.
I have to say that everything they told us to expect was right and on the tee, I never would have thought that the proces of dying from cancer would be so much a like for each person.
Even if he choices to continue with treatment I believe that hospice could give you some very excellent advice and support.
I'm happy that you posted this here as youalso need support and others to talk with.
Know you and your DH are in my thoughts and prayers.
Very gentle hugs to you
Linda
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Old 11-29-2006, 11:38 PM #8
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Default my sis...

Suzanne, I went through what you are having to hold up under...but, mine was my sister. She did not have liver cancer. She had cancer everywhere. I know what you are going through, and hard this is for you. As you have been told by others, it is time for hospice. They will be there as much for you as they will be for him. Once he stopped eating and drinking, comfort for him is the aim. At this point, there should be all of the meds for pain that he needs. Nothing should be held back from him. I will keep you and your husband in my prayers.......sally
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Old 11-30-2006, 06:32 AM #9
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Suzanne,
I know how hard it is to deal with your own illness and try to care for your husband.
I am the primary caregiver to my mom right now--she has several illness's and dementia on top of that.

Its not always easy to decide to bring in people from the outside for help but my illness prevents me from doing it all. While I dont need hospice at this time I did avail myself of help through Home Health.

She has 2 aides that come twice a week to do personal cares and 2 companions twice a week to shop, clean and cook. An RN comes once every two weeks or when called. This gives me much needed breaks and help. Since my goal is to keep my mom at home--I have no choice but to get the help but it has worked out really well--my mom loves these girls.

Hospice offers counseling and advice without ever coming into your house if you just want to talk to someone prior to having them come.
They are also there for you afterwards as well.
They will not judge you Suzanne--I know this because before getting sick I was a home health nurse.

I know you say your husband doesnt want to talk about his death and thst ok. The time will come when he will.
I just want to caution you on a couple things, if I may.

I recently lost a friend to brain cancer and his wife did not want anyone in the home--so he ended up in a nursing home. Nursing homes are not equipped for this type of care. Because they did not have the proper delivery system for his pain meds--he died in alot of pain.

If a nursing home ever comes into play--know that you must be on top of it making sure doc orders what is needed and that the home can handle it. By the way--hospice will alos go into Nursing homes.
Next--understand that a hopsital will not keep him beyond a 72 hour window--they will either send him to a nursing home or home and I just want to encourage you to have a plan in place because sometimes the final event that sets this in motion can be fast leaving you with many things to decide.

I am leaving you with a web site on Hospice--gives you all the info and a hotline phone number. It also will help you locate them in your area.
http://www.hospicenet.org/

Take care,
Bubbi
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Old 11-30-2006, 09:12 AM #10
simby simby is offline
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I am so you and your husband have to go through this.
Please contact Hospice of visiting nurses. They were absolutley wonderful for my mom and me when my father got so sick.

hugs,
sims
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