End Stage Death...

Hi my name is Mary,
my step dad is dying and at the end of his

[Kalio1]

I am so sorry you and your family are going through this. I suggest you contact your local Hospice Care agency. They are wonderful and can help you and your family get through this. I don't know where you are located or I'd give you a phone number but find their phone and call them. They can help and assist you through this.

[Forseegood]

Has he considered transplant?

[doglover28]

I am sorry to hear about your dad.
I don't know much about end stage because I am afraid to read about it.  My husband is opposed to me treating right now. My biopsy showed me as being a stage 1. He feels that it's not a big deal yet.  I have a fear that this ugly virus is going to rear it's head up and get me.  I'm so scared that I've been in denial for a few months.  I am a chicken poop about treatment, too.  I hope I have time for another drug to come out.  

Hey Kalio,
How have you been?

Pam

[NYgirl]

I've not heard anything about that but I am treating to get rid of this disease and haven't read about that.

I'm sorry to hear you are going through this.

I know I had a friend who had advanced cirhhosis and he had a very swelled up stomach but his legs and arms were like sticks - then he got his transplant.  Unfortunately he never got rid of the virus, kept getting high and so he eventually died of liver cancer. This went on since the VERY early 80s until just last year. He's the only one I've ever seen in End Stage.  I should have asked more questions but didn't really want to.

[lauraisstrongerthenHCV]

i am so sorry for your family,  About a year ago my stepfather died from a tumor that he got in his liver as a result of having HEp C for a number of years and eating pain pills.  When he died he was very swollen and yellow from his liver shutting down and he was passing black loose stool,,,,, but he was also on pain meds and died quite peacfully. I was suprised,,,,I didnt believe he was going to die b/c that very same day he went outside for a walk...life is funny like that;;; one minute your walking around and the next you are just a memory....I miss him bunches and wish he had the oppurtunity to be treated but he didnt..........   Dont take any second for granted,  Right now my mom is in ICU with liver failure... she is bleeding and has been for 5 days and they cant controll the bleeding.  Yesturday they asked her if she wanted to be on life support in the event that she would need it... She also has HCV and is an alcoholic.....They are placing her on the liver wait list but I am not sure she will ever see that day... I went to see my mom yesturday and she looked fine to me but then I remembered that so did my stepfather on the day he passed...  please cherish every moment'

that is all i can say...my heart goes out to you and your family

[merlino]

I don't know much about what happens at the end of ESLD But I really need to know. My ex has ESLD and is not doing well. My 15 yr old son is with him on weekends.He feels he needs to take care of his dad. After ready some of this I am so very worried if something bad should happen in front of my son. He would never get over it! He is going there this weekend.

[doglover28]

I am sorry to hear about your mom.  I have a bad feeling that since I am such a chicken, and I don't have the support from home to start treatment that I am going to be facing the same thing one of these days.  Who knows how fast this disease progresses.  I did contract it between the ages of 14 and 17; I am now 42.  I did read once that it progresses slower in people that contract as teenagers, but that's all speculation.

[doglover28]

Hey Girl,

How's it going?  did you start treatment?  If so, how is it going?  Hopefully well.  

Pam

[can-do-man]

Hey girl, hows things going with you and your family?

[merlino]

Hi Pam, I am doing ok, my plate a little full with my ex being so ill. I start tx next Friday 10/6. Hope you are well. How is job hunting going? Keep in touch.

[doglover28]

Hi There!   I went through my chicken stage about coming here because I am so afraid of treatment.  it's good to hear from you.  I found a job!!  I left pharmaceutical development and went back in to insurance.  My anxiety level is going down.  The company I work for now is where I used to work from 1984 -1994.  I quit to stay home with my daughter.  I have great hours 10:00 am - 2:00.  The people are like family.  It's so nice.


What have you been up to?  I've missed you. You have always given me encouragment.  Pam

[doglover28]

Hi Merlino,

My prayers are with you.  

I found a job.  I went back in to Insurance Claims where I worked years ago.  The same people are there, so I feel right at home.  I had to quit taking the paxil for anixety.  It made it worse.  It was awful coming off of that stuff.  Some people it works for and others it doesn't.   I think the new job has helped me being around old friends.  There are people that are still there from when I worked there 12 years ago.  It's like a new world.  

Pam

[can-do-man]

Your gonna be fine, you got time to worry later. Glad you like your job and are still able to be there for your little girl. Keep your eyes out on these new drugs and enjoy life. I'll to your worring for you ok?

I've just been behaving, JEEZ i hate that. Be careful out there and wishing you and your family the best.

[can-do-man]

So sorry to hear your news. Like forseegood said is a transplant possible? Wishing you and your family the best.

[way]

I don't know about end stage and I'm very sorry for and you family.

One Question, is he in the hosp, or will he be dying at home?
I have only seen two people die and basically their bodies just shut down, they weren't concious and it was peaceful in the end.
IMO the issues are clear
If it is going to be a long process at home, I think an IV drip with pain meds should and can be set up by a home healthcare nurse person who comes in once a day covered by ins. And they can also do things like change sheets and bath him. I think you can also get a hosp bed delivered and set up. Of course if you have alot of notice then hospice would be best, but many dying people don't want this.

Laura-My friends Mom who died of Pancreatic/liver cancer (in the hospital)was always sleeping on the pain meds for several days but right before she died-the day before she got real lucid and ate and was joking around, then died that night. I don't want to get religious on you but it seemed to be God letting her say goodbye and spend a bit of time with family. I will never forget it. I would've bet my last dollar thet she was having a remission from the way she was acting.

[doglover28]

Can-Do-Do,
Thanks!   Are you a psychologist by trade?  You are so uplifting to me.  I spent a whole month in bed with anxiety.  I should have visited this site, but again, like I said, it scares me since I was all gun ho to start treatment, and freaked out.  
Melino and Can-Do-Man,

Please check out my website on on Myspace.   My daugher created one, and I did to so I could keep tabs.  It's fun.  It's geared for kids, but what the heck.  Please check it out if you get a chance.  I love it. I can delete and add pictures.  You guys can access me via email if you want, too.  Here it is.   http://www.myspace.com/pkeith28

I swear I went through a nervous breakdown, but I have to be strong.

Love and prayers to all,
Pam
Ps.  Please let me know what you think of the site.  You can click on pictures after clicking on my profile. I will keep them updated.  Please keep in touch.  I need you two.

[goldyn]

Please go to any church ,and go into thier office and explain to them the questions you have , and the concerns you have for your dad, they are there to talk to you and to help you and they also have plenty of resources, and numbers to give you  if you need help you shoudnt have to go this alone, please take care and let us know if he is on a transplant list.
                          God Bless you and your family
                                 Angie

[can-do-man]

You said.........Are you a psychologist by trade?

Thats funny, no but i have cause a few psychologist to seek out help........ I'm a card carrying nut by trade and durn proud of it. BTW nice site there.

[Pdilly]

You start a week after me.  We will need to share our notes. I am a little nervous but am determined at the same time. Good luck.

[Pdilly]

Glad to see you are doing fine.  I have not seen your posts much lately.  You sound pretty upbeat.  Thats good.

Pat

[Pdilly]

Pam,
   I have been wondering about you.  You sound like you are just doing peachy.  That is great.  Glad you like your job and have time to spend with your family and friends.  Thats what is important.  I Went to you myspace and your daughter did pretty good.   Take it east and wait for all the new drugs that will make it easier on you.

Pat

[doglover28]

Thanks!
My plan was to start treatment with Merlino and Pdilly.  Please keep in touch with me.  I will make a point to get on this site to see how you all are doing with treatment.

Can-Do-Man,

Myspace is cool....isn't it??  Post on my site anytime that you like.  You are so kind.

Pam

[Morgaina]

Wonderful words, especially because it wasn't just a story. I taught my kids that kindness and respect are THE most important things. You are a true living example. Peace to you!!

[Lonestar823]

Thank you Morgaina.  It's the only way I know.  Bet you know it too.

[Lonestar823]

My dear Mary  You sound very afraid and confused about your stepfather's end.  You sound young and fragile and rightfully so.  No one wants to look at death up close if it's not necessary Mary.  When it involves someone we love, we have no choice.  The best answer you received is from Kalio.  Hospice staff is loving, compassionate and truly care for the dying and family involved.  You could look on the internet for a hospice near your family.  They'd help you and answer questions.  If your stepfather chooses not to go to hospice and stays at home you and your sister will need to be very strong for your mother.  From what you wrote regarding your mother's description of what your stepfather may face, I must tell you I did not experience that particular horror when my childhood friend died from hep c related liver cancer.  I will not give you all the proper terminology, you'll learn it soon enough.  My friend had no one to help him.  I had known  and loved him since I was fourteen and hadn't seen him for 25 years when he called to tell me he was dying.  I packed immediately and drove four hours to find him.  He lived in the most terrible neighborhood in a filthy little camper trailer.  I was shocked.  He came from a family of portrait artists but his drugs and alcohol had brought him to this place.  There was a clothesline there with sheets hanging and blowing in the wind.  A breeze picked one up and I was horrified at the sight of my old friend sitting in a lawn chair.  The breeze stopped and the sheet drifted down long enough to compose myself.  When it lifted again I took a deep breath and went to him.  I stayed for the last six weeks of his life.  He was very frail and thin, like a skeleton.  He couldn't eat or barely drink.  He couldn't do anything alone.  Your stepfather will need to be bathed and cared for like a tiny and frail baby.  One thing that won't change is who he is.  Noah never changed inside.  He loved the same poetry, the same music, the theatre and laughed at all my jokes.  I cooked and cleaned and carved pumpkins for him.  I made a huge childlike calendar for his fridge.  He would forget the month, the year, the day of the week and so it may be something you could remember to tell your mother if stepfather stays at home.  My best advice is to be strong and loving without doting and appearing to be afraid or sad around him.  Live around him and for him.  Though Noah refused to go to Hospice, they came to me and showed me how to give morphine injections.  They made a chart and instructed me on all medications.  Their number was on the fridge for me to call night or day.  I couldn't have done it without them. The last day of Noah's life here on earth he started vomiting blood.  Not huge amounts like I had been told but as the evening turned to dawn there was no rest in between.  I was lying beside him ever so gentle in his bed when morning birds started to sing, Noah turned to me and said, Hey Beck?  I think we're out of time and and you were the best part of the show. Then he was gone.  Easy, peaceful.  You deserve the truth Mary, so there's Noah's truth which may help you and your family.  Be strong.

Rebecca

[Lonestar823]

Noah is the inspiration though, don't you think childangel?  Certainly he was for me.  I learned so much from him.  Hope I didn't frighten Mary.  Her post unnerved me because I could feel her fear and she sounded so young.  I started to type but the stream of consciousness took over and brought me back to that time four years ago.  Maybe I should have just left it alone.  Kalio and Way gave her excellent advice.  By the way, I've always been drawn to your nickname.  Peace.
R

[Kalio1]

Rebecca,
You are truly an angel. I am sure your friend Noah would agree.
Your story really touched me. The world is a better place because of people like you. You showed such bravery and compassion in his time of need. You define love with your actions.

[lauraisstrongerthenHCV]

dog lover please dont wait to treat.  If you are going to die please die fighting.  I am so afraid of this medicine that at times I stay up the whole night b/c I am afraid it will kill me in my sleep.  I am on week 10 and still here.  My point is that I am very very very scared but if I can do it you can too!!!  I am so crazy that I get my regular lab work and on top of that I go to the er everyweek and make up an excuse to get more!!!!!  Life is too short to just give up.... at least give it a try it really isnt that bad.. I kept putting off my treatment and I came up w/ every excuse possible:  I didnt want to be sick, I had to work ; I wasnt done college and I had to take care of the kids... but finally I had to face the facts and that was either treat it now while I am healthy or die a miserable death later and regret not trying.  BTW I dont have any support either and believe me you dont need it. You are the only one that has the power to take the tx and regardless of who is there to help you are still alone.  Hey do what I did... I started going to a psychologist just to talk...I had to pay for my support group LOL  anyway good luck and get treated ASAP

laura

Pacheco_____  thanks for your comment I am glad another person has seen this happen because I was beginning to think I was crazy!!!  I hope my mom pulls through---- I will keep you all posted!!!!

[doglover28]

Hi Laura,

Thanks for your concern, but I have very minimal damage right now.  I would like to wait a while for the better drugs.  I have a great doctor and he does a lot with the vx950 studies. I would like to wait until my daughter is in college, too.  
I really do appreciate your concern.  My doc even told me I have time.  I don't think I need to go in to something when I am not ready.   Now if I progress to a stage 2, Firbrosis 2...yes...I will start treatment and not wait, but as long as I am at a stage 1, fibrosis 1 and nothing funky going on with my blood, I want to wait.

Pam

[cuteus]

I have a friend, Betty, who is advanced stage three, with three daughters of which two inherited the disease. Her x died last yr of ESLD due to hep c. Her youngest daughter was at his side when this happen and it was traumatic.  It is also life, having to die.  I will try and get her to email you, so that she can share her experience with you. I am at my name here plus belleus and send it to yahoo. I will forward your mail to her.
stay well

[ss418]

My wife is in end stage ovarian cancer that has metastasized to her liver, the tumors are large and growing too fast. Radiation eased the pain but chemo, Gemsar this time, is not working. The doctors recommended she stop treating and enjoy what time she has left, but we said no and are continueing with the Gemsar.
May I ask what we are facing when her liver fails. the doctors say the time is short but she is still feeling fairly well.

[Lonestar823]

I saw your other post at the top. I think it was you anyway. The symptoms your wife is experiencing sound very similar to my friend Noah's towards the end of his life.  He also tried to use laxatives to relieve the pressure.  Nothing worked.  He just became weaker and weaker as the weeks passed.  I expect you and your wife will experience what Noah and I experienced.  Please contact Hospice. They will not let your wife suffer.  I don't know how we would have managed without them.  Noah stayed at home but they came every day. I once saw someone who went to hospital to try to stay alive with end liver disease.  I would choose Noah's route.  Bless you both.

[ss418]

Thank you for the response and advise. As you know, this is the hardest thing I have ever had to face, not only facing the loss of my wife of 46 years, but also watching her go through this terrible ordeal and feeling so powerless to do anything but pray with her, love her and try not to make it seem hopeless. She is not one to ever give up.

[Lonestar823]

I wish to God I was more knowledgeable in hopes I could help you.  Is liver transplant out of the question?  Have you spoken with your wife's doctor about this?  I've read about many people on this site who know of others who have done it successfully.    My friend didn't really accept his passing until the last few weeks of his life.  The time I spent with him just doing ordinary things changed me profoundly.  I'll never be the same little lonestar again.  My character and my compassion have deepened and I'll always feel like I've come from far, far away.   Heartbreaking as it was and always will be for me, I would never trade one second of what we shared for anything.  Forty six years together?  Then you are her and she is you.  I can't even fathom what you are going through.   No one will ever tell you how long and exactly what to expect.  Anything can happen, even miracles. You are welcome here whenever you need to talk.  

Sorry, looks like I posted twice but the first one was blank.

[Lonestar823]

I wish to God I was more knowledgeable in hopes I could help you.  Is liver transplant out of the question?  Have you spoken with your wife's doctor about this?  I've read about many people on this site who know of others who have done it successfully.  It's really a rarity nowadays to see a soldier like your wife who doesn't give up easily.  My friend didn't really accept his passing until the last few weeks of his life.  The time I spent with him just doing ordinary things changed me profoundly. I'll never be the same little lonestar again.  I'm a deeper, more compassionate and feel like I'm from far, far away.  As heartbreaking as it was and always will be for me, I would never trade one second of what we shared for anything and I never gave up.  I believed he had a chance until the last moment. Noah died free which is what he wanted.  No hospitals.
Forty seven years together?  Then you are she and she is you.  I can't even fathom what you are going through.   No one will ever tell you how long and exactly what to expect.  Anything can happen, even miracles. SS, anytime you need to talk, Lonestar will listen.

[ss418]

Thanks again. Yes, everytime she talks to any of the doctors I am always there, the same with treatments, I am there to ask questions and remember things Judy does not, don't let anyone ever tell you that chemo brain is not real. We asked about just removing the parts of the liver that are affected but the answer was "there would not be enough liver left to support life. A liver transplant is out of the question because she has another tumor in the left side of her belly, probably attached to the colon. This tumor has shrunk from 5in diameter to 2in, from chemo treatments, and is probably dead and is being resorbed into the body. We are told the rules do not allow a transplant into an active cancer patient. WE are Christians and have hope that god will listen to the thousands of prayers for Judy he is getting. Judy is an amazing lady whose smile lights up everyone she meets, and I hope God can see the value of keeping her around for many more years. She is only 64 years old.
Thank you for letting vent, it is not always easy to say some things to friends and family...Ken

[Lonestar823]

Ken, Your Judy is so young.  She's the very same age as my oldest brother.  One of seven.  Yup, I have seven of them.  I did 73 weeks of a drug called infergen so trust me, I believe you when you talk about chemo brain.  I only discovered this site when I was so far into treatment I had lost my ability to think.  I couldn't write or read with any comprehension and I lost my speaking voice as well.  I finished about 12 weeks ago and I still don't feel like the same person. I couldn't or was unable to take part in discussions. Still can't mostly. I only read and tried to remember as much as I could.  On top of that I'm kinda the shy, lone dog type and so it isn't easy for me to initiate in a discussion.  I think you may have better advice if you start a new thread and post your questions anew.  There are so many knowledgeable people who speak here.  Honestly, I think some know more than my doctor.  That way, your question will be at the top of the page and you'll get more input.  I hang out here at the bottom alone, still trying to exercise my brain and to gain knowledge and to learn how to even use this darned site. ; ]  (My nephew Timothy tells me that means a wink and a smile. )  I'm not so computer savvy.  I brought my little Mum to hospital today.  She's 80 and is very frail.  I am her last child and only daughter and I am sad and weary this evening.  Please try to post at the top, okay?  I just know you'll get expert and thoughtful answers.  If you ever feel like venting I have an email on AOL.  It's MsLittleLoneStar.  I'm not too sure of the rules here.  Maybe I'm not supposed to post that.  I thought of you and Judy off and on all day.  
Rebecca

[cuteus]

by your posts, it is hard to believe there is any cognitive deficiency with you. your recall of events and your expression of them is remarkable, if this is you with 'damage' you must have been extraordinagy prior to tx!  I am glad you found MH, and it does not seem as if it was too  late, not by what you were able to do for SS.
take care and stay well

[ss418]

Lonestar, it means more than you could  know to have a complete stranger get involved with the problems of people like us. I have read some od you previous posts and it's obvious you care about people. It helps to talk to someone who has gone through this process and is able to pass her experiences on to help others. You certainly have helped me. You are my Angel, Ken

[Lonestar823]

Back from hospital with my little Mum.  Looks like I'll get to keep her a bit longer.  To and fro, huh?  Everyone on this board lives in hospital land.  Doctor land, drug land.  I think it may partly be why we're all so deep, empathic and feel like we come from far, far away.  We smell sickness.  We feel the wounded.  We've experienced it.  Sometimes I think I could walk around this earth with my eyes blindfolded and still recognize a soul in pain.  I think we all could.  How are you doing Ken?  How is your jewel Judy?  Any change?
Cuteous, Thank you.  Though I did experience severe chemo brain and still do, I've always been in love with words.  I love to try different ones out and string them together in odd ways. Like clothes on a clothesline.  Mostly to move, to provoke, to create a thought that ignites.  Some day I'll be able to do it again.  When I lost my ability to read and write I found it the worst part of tx.  I'm better now but still foggy and unsure and ether like.  Best part now is I can stand on one foot out of the shower and dry the toes on the other  without fainting and falling over. ; }   It makes me smile wicked big.  I wasn't so brain dead all those months reading this forum that I didn't recognize your strength and ability to calm, heal even.  Thanks for fishing with me at the bottom here. ; ]  Time to make a little supper.  Night then.

[Mommies Baby]

My mother passed-away in Febuary of 2003 six days before her 69th birthday from liver cancer.
It started out as Cirrhosis of the liver aan then turned to cancer.
I to have Cirrhosis of the liver and have had it for years.
It has gotten worse over the years and now I believe I have liver cancer.
I have all the symptoms of liver failure such as, Feel weak, slow, and lethargic
Experience muscle tremors and twitches
Feel quite itchy
Become confused, sleepy
Have trouble with bleeding
Get a swollen belly and swollen legs.
I even go through joint pains and pains that go to my testicles.

I have seen what my mother went through and I surely dont want to go through that.
Sadly I was not with her all through her last days ( I had to go back and forth to my house to help my wife with the kids).
But her last three days of her life I stayed by her bedside while she was in a coma.

It has been it has been almost four years since she passed-away.
What I am hopeing for is someone to tell me exactly how a person will act when they have only two or three days before they pass away?

My heart goes out to all the people that had lost a loved one to a liver diesease.
God bless you all.

[Mommies Baby]

My mother passed-away in Febuary of 2003 six days before her 69th birthday from liver cancer.
It started out as Cirrhosis of the liver aan then turned to cancer.
I to have Cirrhosis of the liver and have had it for years.
It has gotten worse over the years and now I believe I have liver cancer.
I have all the symptoms of liver failure such as, Feel weak, slow, and lethargic
Experience muscle tremors and twitches
Feel quite itchy
Become confused, sleepy
Have trouble with bleeding
Get a swollen belly and swollen legs.
I even go through joint pains and pains that go to my testicles.

I have seen what my mother went through and I surely dont want to go through that.
Sadly I was not with her all through her last days ( I had to go back and forth to my house to help my wife with the kids).
But her last three days of her life I stayed by her bedside while she was in a coma.

It has been it has been almost four years since she passed-away.
What I am hopeing for is someone to tell me exactly how a person will act when they have only two or three days before they pass away?

My heart goes out to all the people that had lost a loved one to a liver diesease.
God bless you all.

[ss418]

Thank you Lonestar for keeping us in your thoughts. Judy is doing better than anyone expected, she is back on Gemsar chemo treatments, once a week for two weeks, then one week off. The chemo is very hard on the white blood cells so now and then she has to skip a treatment because her white count is too low. We know she needs the white cells to fight the cancer as well as the many bugs that are expected this time of year. She still lights up my life and is always ready to come to the aid of anyone who is not able to meet their own needs. It warms my heart to see so many people that I don't even know come up to us and hug her and wish us well. Our little rural upstate NY village is exactly the right place for us to be right now, in spite of the nasty weather. Ken