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gambles
11-29-2006, 12:26 AM
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




rfinney
11-29-2006, 01:24 AM
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

Bubbi
11-29-2006, 10:40 AM
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

gambles
11-29-2006, 02:58 PM
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

Curious
11-29-2006, 03:47 PM
((((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. :o 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

rfinney
11-29-2006, 04:05 PM
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

LindaM
11-29-2006, 10:04 PM
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

sallyb
11-29-2006, 11:38 PM
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

Bubbi
11-30-2006, 06:32 AM
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

simby
11-30-2006, 09:12 AM
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

Boopers
11-30-2006, 10:24 PM
Dearest Suzanne,
I'm so very sorry this is happening to you and your husband. It's just heartbreaking.
I don't know about liver failure but my Mother had pancreatic cancer and her liver eventually failed. My Father had already passed four years before, so I promised him that I would take care of my Mother and I fullfilled that promise. I moved in with her when she became too sick to take care of herself.
I honestly don't know what I would have done if it hadn't been for Hospice. They stay in constant contact with the Doctor who is taking care of them, so they are able to dispense pain medicine or anything of that nature to help ease their pain.
My Mother's worst fears were that I wouldn't be able to handle it after she was gone and I had to reassure her daily that I would be OK and it was OK for her to go. Although, at the time, I really didn't feel that was true as I didn't think I would be OK if she left me. I had to say it for her sake and peace of mind.
In the end, she went into a coma. I still talked to her as if she could hear me. I honestly know that she did hear me because I told her to give my Dad a kiss when she saw him and she actually smiled. So, that was when I knew she could hear.
Suzanne, I wish you didn't have to go through this. I wish there was something I could do to help you.
Please take care of you through all of this. We sometimes neglect ourselves as all our thoughts are with our loved ones, but we shouldn't forget about us.
I wish you and your husband love and peace through all of this. Just come on here any chance you get to talk about it. I found the more I was able to talk, the better I became.
If there is anything I can do, let me know,
Thinking of you,
Linda :)

gambles
12-04-2006, 12:51 AM
We spent Friday at the hospital supposedly for his second chemo embolization, but they couldn't do it as his blood was/is critically thin from Warfarin so now this week will be checking his blood daily and as soon as it is back to normal, they will be doing the procedure the next day. Apparently the first one on the left side of his liver did stop the rapid growth though there was no shrinkage. When the doc examined him, he had a horrified look that he quickly covered. Luckily Greg didn't see it. Apparently the largest tumor in the right side of his liver has distended around his side and is pressing on his kidney which is what is causing him massive pain. It shocks me that a person can even have "dozens" of tumors in the liver, but he does. Miraculously once it moved from his colon to his liver, it has just stayed there and gone nowhere else.

All the hospice info and the link are very much appreciated. I did mention it to Greg. His look was sheer terror as he associated it with no hope (as did I before I had more info) He is definitely not ready to give up. I have told him whatever he chooses to do or feel is prefectly valid and fine with me. He woke me last night because he looked in the mirror and thought he looked yellow. He was very pale, but he was actually much more yellow last week, but he never noticed. My husband is only alive because of strength of will. Over four years ago, we were told he had 4-6 months. I am in awe of his determination and strength. He worked and led a basically normal life for most of that time - though he had lots of chemo and surgeries. The fear definitely comes through more often now, but he isn't ready to give up. I feel like I am walking a tightrope of trying to be positive, but also at the same time trying to make it ok if he is ready to quit.

Last week I just kept expecting to find him dead and tried to prepare myself for that. Apparently my mother did the same thing for years before my father did during heart surgery a few years ago. Now I actually think he might make it till the New Year.

I can't thank you all enough for taking the time to answer my post. I have reread every post several times. I have really missed this board and am very glad to have finally found it after such a long time.

This will be another tough week for me as I have my own oncologist appointment on Wed. Hopefully it will be nothing. I don't think I could handle any more right now. It will be horrible if they do end up doing Greg's surgically implanted chemo on Wed as my appt is too important to cancel, and I can't be in two places.

Thank you (though that word isn't big enough for how much I appreciate your posts),
Suzanne

By the way, the answer to where I live is Miami, but the problem with transportation is my pain, and having a driver who doesn't know that the tiniest, silliest, little things make it soooooo much worse is terrifying to me! People who drive me regularly (basically mom and husband) know to avoid manhole covers, potholes etc and approach stops VERY slowly, or I won't even be able to get out of the car. I imagine lots of people out there can relate to that! :)

Curious
12-04-2006, 01:09 AM
(((((suzanne & greg)))))

i know this is such a terrifying time for him. none of knows exactly what he is going thru. you know more than anyone. him keeping his will and fight for life...wonderful!

has he met or talked online to any liver cancer survivors? i see commercials for cancer treatment of america. i will try and see if they have a message board.

you have to take care of you too.

you and greg are both in my prayers.

Curious

Curious
12-04-2006, 01:14 AM
here is the website for Cancer Treament Centers of America.
they have a toll free 1-800 number and a live chat.

http://www.cancercenter.com/

rfinney
12-04-2006, 03:50 AM
Suzanne,

I can really understand what you are saying about your husband's will and determination. I just happen to be in a position, because of your posts, to experience more directly YOUR amazing will and determination - not to mention your sensitivity, resourcefulness, willingness to accept input, and most of all, your courage.

I am happy to hear that you do have help from your mother - and it sounds like maybe some others as well. I urge to continue to use any and all potential help and not let normal anxieties and so forth to deter you. This is an extraordinary situation. Not only are you entitled to help, but in order to respect and honor both your husband's needs and your own, you must not turn away from any significant, possibly available help.

I have a strong sense that your priorities are well matched to your current situation. Something tells me that you will do whatever you can and need to do in order to be true to your self and to your relationship with your husband.

I will continue to hold a good thought for both of you.

rfinney

Wing42
12-07-2006, 03:28 PM
Suzanne,

I can't add much to the great replies here, but hope my thoughts and experiences with serious life threatening illness can help.

In June, a CT scan showed a large mass in my lung. My lung specialist told me that the size, shape, and rapid growth were consistent with cancer. Lung cancer can be very hard to diagnose. As big as the mass in my lung was, if it were cancer, Id probably live for just a few months. After the initial roaring confusion and despair when the CT scan results were told to me, I got my bearings back and started planning for my final days.

It turns out that I have what is called necrotizing pneumonia. The mass in my lung was dead and dying tissue. There appears to be no cancer, but cancer is still a possibility. Cancer or not, I was VERY sick and at serious risk of dying from the pneumonia in July. My health is now much improved. The latest CT scan shows the mass has shrunk to it's probably smallest possible size...a scar. I still have pneumonia, but it's well on its way to healing. It left me with some emphysema, and an appreciation of every day as a precious gift.

My inspiration and mentor in dealing with this was my best friend who had died of liver cancer about 10 years ago. How he handled the last six months of his life was the example I decided to follow. This is somewhat of a eulogy. I hope you and your husband can get some inspiration and guidance from who he was.

Bill Edmonston was an ex-Marine warrior for world peace, and a deeply spiritual man. When he got the diagnosis of liver cancer, he accepted the facts as they were and his prognosis. Warrior that he was, he dealt with his changed circumstances calmly, powerfully, and with acceptance. First, he told everybody who cared for him about his situation. Then he passed on his many "retirement" projects to others who were devoted to carrying on his work. These included an Indian Literacy project with two local tribes and a free or low cost speech and language therapy foundation he founded (called Logogenics, Inc.).

When his projects were in good hands, he and his wife drove from San Diego to visit friends and family in Texas, New Mexico, and Washington state while his health permitted. As he became weaker and as his pain increased, he withdrew to spend more and more time with his friends, family and grandchildren. He metered his morphine to be aware and active when awake and with other people, and to be reasonably pain free when he intended to sleep and rest. Amazingly, he attended the college graduation party for one of my sons two days before he died. At the party, he joked, sang, and played the piano and banjo for us. Most of the other guests didn't know how sick Bill was.

Bills spirituality ranged from a deep involvement in the Unitarian Universalist Church, through a wide ranging lifelong study of eastern thought and ancient Greek philosophy. He had translated the ancient Babylonian Gilgamesh epic, and had sculpted a series of bronze statues of the ancient Greek goddess Demeter. Doing both helped him understand these ancient philosophies and spiritual paths. Besides being very smart, Bill was an accomplished artist.

Most of us will never achieve what Bill did or have the impact on others that he did, but we can live and end our lives like he did, with grace, power, caring for others, and acceptance of what is.

If your husband wants to continue fighting this, by all means he should explore and try whatever seems reasonable to try. But, as the saying goes, "Hope for the best and plan for the worst." I know that you and your husband had a future planned, and expectations that have been dashed by his illness. Nothing is hopeless. But hope and a state of grace can come in ways and forms that we don't expect.

These days and months to come can be the most rewarding and profound time of your lives. His health may not allow a wild romantic trip to Paris or Hawaii, but he and you may now finally have the time and motivation to talk deeply of your feelings for each other, regrets you may have, apologize if you or he feel the need, and share revelations, hopes and wishes for each other and love for your family, and plan for life after he's gone. You can bond like you never have before. He can give up striving and find peace, and so can you.

You both have my deepest sympathy, hopes, and prayers.

DiMarie
12-09-2006, 04:36 PM
Suzann,
I am so sorry for your family, it has to be so difficult between your own health and now his.

My Dad had colon cancer, the test showed a problem but no one called to let him know almost a year later and with ongoing flu symptoms and fevers he was told, by the way, your test ahd a problem.

By then it was in his liver. They did a liver biopsy, a bone scane was positive and the chest xray showed the lungs. He did not have Juandice at that time. They did colon surgery, did not bother to put him on a bag as the tumor in the liver was so filled with tumors, so many of them.

From July colon surgery, to the next April he got along. He was weak, his back was the worst pain from being spread there, and the taste in his mouth from the liver.

Two weeks before he passed away we took him to the hospital Hospice. We had at home until then and when he becamy nonambulatory and his mind was not here right we took him to the ER...in ther we saw how frightening yellow he was.

From that time, the severe yellow there was a fast downhill.
Now, my nephew ahd onging problem and was waiting for a liver transplant at Jeffereson in Phila and they gave him blood, but whatever crisis it was passed. He is home, reduced med's and no longer needs the imminate transplant.

So I think it is all a person to person and medical history.
If he really wanted to know they could admit and run test, to see how far it has progressed. But, mentally, I would not bother if I were the patient. Like you said they told him 4 months, so they really don't know.

Hospice is not about Death, actually it is about hope and extendeing to the fullest. Anything we needed they provided for Dad No Charge, a walker, wheelchair, supports for the tub and toilet.

But most of all, the hospice was great companionship for my Dad, allowed me a bit of time to bath, nap, or go outside for a cry. They were such a welcome sight for our eyes, not doom and doom!
I loved the lady. Later, they had a chaplin too from the hospice, he was a vet, and Dad really enjoyed the time they visited as our own church had closed doors and dad wanted a close pastor for later.

Even if your husband lives for years, I would take each day as a gift, make memories and remember some really good ones.

The forum is a unending vast vessel of support.
Friends kept me going in a crisis last year when my daughter after a liver failure from being on methadone, to Feb. She ahd diabetes from Serquel, making an infection almost take her life.
They wer here for us and I will never forget the presence of so many in our life during that time.

I couldn't have made it without the out pouring of support from here.
My prayers,
Dianne

dadsgirl
12-09-2006, 07:22 PM
Dear Suzanne ~

I am so very sorry for all that you are going through. You have gotten some wonderful replies that I can't really add to ~ but I wanted to let you know that you and your Husband will be in my prayers ~

Much Love,
Sue

aloisdamoc
11-13-2008, 01:12 AM
I am unable to work, have Hep B + Hep C for many years i seen young, old and middle age people dying of liver failure, myself i will dye soon, have similar symptoms with your husband, i am 43 y.o.

Not so lucky to have a caring wife, family or friends, i will dye in my room alone. I am just an immigrant out of luck.

I live in Vancouver, Ca, you can ask any question about liver failure.

Jane
11-17-2008, 09:46 PM
It really is important to let folks know that Hospice is available at nursing homes. My father passed a little over a year ago. His medical problems were so numerous and complex that being at home was not an option. He spent his last 18 months in a total care unit with a private room and Hospice. We could not have asked for more loving care and knew his physical comfort was a major priority.

Dad was a musician. He had not appeared conscious or responsive for about a week before he finally passed. The day before, one of his aids brought her violin in and played for him for two hours. You could see tears going down his cheeks off and on durring that time. One never knows. Best wishes to all.

Koala77
11-17-2008, 10:49 PM
Suzanne, I'm so sorry for all that you're going through, and my heart goes out to you. I wish there was a way I could make it all better for you, but we both know that's not possible.

Unfortunately I have seen people die from liver disease, both as a nurse and also as a daughter. My dad died from liver cancer but his illness was very rapid. I don't know that there is a common time frame for poeple with liver failure. Like many things, I guess everyone is different, everyone reacts differently to treatment and I believe..... to the love and support they are shown.

My dad only lived for 9 weeks after he was diagnosed with liver cancer, so he didnt have any of the treatment options that you mention. His cancer was already well advanced when they found it, and after that everything happened far too quickly. I think that if he had the choice he'd have tried the treatments that your husband is having, but unfortunately for him that wasn't to be.

I wonder if you've spoken to a Palliative Care or Hospice Nurse about the concerns that you have voiced here? The nurse is probably the best one to answer all your questions of this nature. If you don't have one close, try the Cancer Council in your State. I'm sure they'd have some-one available on the telephone to help people like yourself.

Do keep in touch Suzanne. We may not have all the answers, but we do care, and we're here to support you throughout this hard time in your life.

Hugs..... :hug:

ladyrock
03-05-2009, 02:01 PM
hi my husband has lver disease, 1 year ago he seemed fine. he went for a check up and found he had cirrosis stage 4 and hepc .he was started on pegitron and rivabirin, it didnt work, he was lost over 100lbs he was been coughing up alot of blood ,he is very weak has temp of 101 to 102 he can barely walk at times blood presure has gone very low. we have been trying to get him on disabiliy nothing yet ,im tryin to take care of my husband and work every day for the past week im afraid i ll come home and he will of died,we have no insurance because i cant afford to pay it and the bills,he work in construction up till 5 months ago.i dont know where to turn ,for help he wants to die at home and has given up, we have only been married 1 1/2 years my heart goes out to anyone else that is going threw this .....

DiMarie
03-06-2009, 02:33 AM
hi my husband has lver disease, 1 year ago he seemed fine. he went for a check up and found he had cirrosis stage 4 and hepc .he was started on pegitron and rivabirin, it didnt work, he was lost over 100lbs he was been coughing up alot of blood ,he is very weak has temp of 101 to 102 he can barely walk at times blood presure has gone very low. we have been trying to get him on disabiliy nothing yet ,im tryin to take care of my husband and work every day for the past week im afraid i ll come home and he will of died,we have no insurance because i cant afford to pay it and the bills,he work in construction up till 5 months ago.i dont know where to turn ,for help he wants to die at home and has given up, we have only been married 1 1/2 years my heart goes out to anyone else that is going threw this .....

I am so sorry to hear what your family is going through. I would contact one of your State Representatives to see if they can expidite the claim. Also, I don't think that Hospice is for terminal patients only, but also for chronic ill. I would check into that. I know they provided for all unmet medical needs for my Dad and did not charge a penny.

My prayers are with you. If you have time to stay in touch I have found supportive friends in many forums here and also in the Spiritual Support forum.
we all keep each other in our prayers and thoughts.
Hugs to you both.
di

ladyrock
03-06-2009, 11:10 AM
thank you i just found this site i have had no support my heart goes out to anyone going threw this i will trythis:(

Chemar
03-06-2009, 12:06 PM
welcome ladyrock :hug:

Bany1
08-24-2010, 05:11 AM
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
suzanne..i came to this site by mistake..you have posted the question i was about to. I was diagnosed with hep c & cirrhosis of the liver a year 1/2 ago..the only treatment i have received is a contracted morphine for my pain. I was told 2 weeks ago that my liver would fail in 1-3 years...not months. It freaked me out : He made it sound like i got the constelation prise in a contest. I have a lot of family and friends...but they all think there is a miracle that is going to save me..or this is just theyre way of dealing with it. My heart goes out to you,,,but i just wanted to say..being on the other side of the fence..i dont know what to expect and dont know what is going to happen when the end comes for me. I have read a million articles on the web...and the comfort of talking to my doctor was just not there. I just wrtote down all the questions i had for him & he seemed so unconcerned about all of it. If you find any answers dear... Please post them and let me know, time is short & i would like to know what to expect as well.....ty for your courage and im sure your husband thanks you for all your doing for him. Be stong,,god has an answer & a plan for us all....it will come to you.. God bless shirley

nickmford
04-17-2011, 02:56 AM
I've lost a family member to end stage liver failure. What I can tell you is that each case is different and by no means should you consider one doctor's opinion as the end all be all.

For my cousin, she was a heavy drinker. She likely had been living with severe liver damage for some time before it finally caught up to her. Over the course of a month she managed to critically damage her liver and had to be rushed to the hospital.

She spent the next month sober, probably for the first time in 20 years. Doctors ran tests and tried their best to get her liver to function, but there was nothing they could do -- she absolutely needed a transplant. She was diagnosed with end stage liver failure and sent home to receive care from hospice. Her prognosis was one to two weeks left to live.

After returning home her body began to retain tremendous amounts of water, she looked as though she was 9 months pregnant and her feet had doubled in size. She was unable to get up or even walk. She slept for 20 to 22 hours a day and had little to no appetite, she would ask for ice chips to suck on every once in a while.

After four weeks, an increase in pain medication and even more water retention, she passed away.