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Cirrhosis ForumsGeneral & SupportMy dad is dying of cirrhosis
10/29/2011 07:28 PM
Bsybee747
Bsybee747
 
Posts: 73
Member

Hello, I'm new here this is my first post so let me give a little history. Sorry if it seems like rambling... It probably is.

My dad has been a heavy drinker for at least 20 years. He has been to several rehabs but eventual went back to drinking. We have tired everything from understanding and sympathy to tough love. We have expressed our anger, our fears, our hopes, etc but we all knew it was up to him. He has been diabetic for about 15 years so needless to say, the drinking hasn't help that. He always used to joke that he would die drinking. Although never diagnosed with depression, I believe he is severally depressed and drinks to self medicate.

He was diagnosed in March 2010 with cirrhosis, hep c, and liver cancer. Within 6 months he had completely stopped drinking. Not because he wanted to but because it made him so physically ill. He was seeing specialists who treated the cancer and started the pretest for a transplant. They said he had 20% of his liver working. But then he decided he doesn't want a transplant and stopped seeing those Doctors. Since then his kidneys have started to fail as well. Now they say he has 7% liver function. They were draining his stomache two times a week then decided to do the TIPS procedure. Their first attempt at TIPS was not successful and an over night stay in the hospital became a week stay because the ink had such a negative impact on his kidneys. After a month, they tried the TIPS again and said it was successful. He starting retaining fluid throughout his entire body rather then just his stomach. They said it was do to his protein levels so have giving him protein, they discharged him. That was last week.

Throughout the week, he has taken a turn for the worse. He was admitted again last night. His ammonia level was 122. He was delusional and very combative. Today he is not combative but is still very confused, is not even able to hold a cup, cries alot and complains of a lot of pain.

The doctors said it will take a couple days to get his ammonia levels back down and they said when he is coherent they are going to talk to him about a transplant.

He has made it very clear to us that he does not want a transplant. He says he just wants them to keep him comfortable and nothing else. He says he is tired and doesnt want to be a pin cushion anymore. He has extreme anxiety whenever needles are involved or even if he thinks they are going to be involved.

I have so many emotions regarding the entire situation. Anger, fear, frustration, disappointment, etc. He has always been so strong and a fighter and I dont understand why he isnt fighting or why he doesnt want to live.

I keep telling myself that this is about him and not about me but its hard. I keep telling myself to prepare for the worse because I know it will come soone rather then later if he doesnt get a transplant. Sometimes I have myself convinced that I am as prepared as Im going to be but then I see him and my heart breaks into a million pieces and I know you cnat prepare for that and Im not ready for him to stop fighting.

Well as Im writting this my sister called and said he has started throughing up blood and she thinks I better come back to the hospital.

I guess I really didnt have any questions, just needed to vent.

Thanks for listening.

~Tish

May you now rest in peace in the heavens above. You will be sadly missed but forever loved. - I miss you Daddy! 11/14/2011

The most powerful tears are not the ones that fall from your eyes and cover your face. It's the ones that fall from your heart and cover your soul. ~Unknown


Words to live by: Life is about making memories. Don't get so absorbed in making a living that you forget to make a life with your loved ones. They cannot enjoy you from their grave.
Reply

10/29/2011 08:34 PM  Top
mikealpha1
mikealpha1
 
Posts: 2021
Group Leader

My prayers are with you! As you say, it is his choice. If that is indeed what he wants, make sure he has the proper paperwork signed; advanced directives, dnr, medical power of attorney.

On the other hand, I did receive a transplant. The change is incredible. Tell him that I would recommend it for anyone in this situation. The feeling even the day after the transplant is soooo fantastic!

May you and your family be strong and have peace.

Peace be with you,

Mike

10/29/2011 08:55 PM  Top
1polarbear
1polarbear
 
Posts: 619
Member

sending positive thoughts to you and your family for strength. May you hold each other and heal with comfort and love.
Journey well,
Robyn

10/29/2011 08:58 PM  Top
Bsybee747
Bsybee747
 
Posts: 73
Member

Mike, thank you for your kind words! We are looking into getting all the paperwork taken care of.

Congratulations to you and your loved ones on your transplant. That's awesome.

~Tish

May you now rest in peace in the heavens above. You will be sadly missed but forever loved. - I miss you Daddy! 11/14/2011

The most powerful tears are not the ones that fall from your eyes and cover your face. It's the ones that fall from your heart and cover your soul. ~Unknown


Words to live by: Life is about making memories. Don't get so absorbed in making a living that you forget to make a life with your loved ones. They cannot enjoy you from their grave.

10/29/2011 09:00 PM  Top
Bsybee747
Bsybee747
 
Posts: 73
Member

Thank you Polarbear. Your thoughtfulness is greatly appreciated.
~Tish

May you now rest in peace in the heavens above. You will be sadly missed but forever loved. - I miss you Daddy! 11/14/2011

The most powerful tears are not the ones that fall from your eyes and cover your face. It's the ones that fall from your heart and cover your soul. ~Unknown


Words to live by: Life is about making memories. Don't get so absorbed in making a living that you forget to make a life with your loved ones. They cannot enjoy you from their grave.

10/29/2011 09:43 PM  Top
tabbtech
tabbtech
 
Posts: 477
Member

Bsybee: Much prayers for you and your Dad. I wonder if he's afraid of being whatever he would be since he is no longer the strong man he has always been. I know I am, but he can find a new kind of strength.

Peace and Joy to All.

Paul

Thanks Mike for always being such an inspiration and source of hope.


10/30/2011 02:56 AM  Top
Bsybee747
Bsybee747
 
Posts: 73
Member

Tabbech, you could be right. Thanks for your words of wisdom.
~Tish

May you now rest in peace in the heavens above. You will be sadly missed but forever loved. - I miss you Daddy! 11/14/2011

The most powerful tears are not the ones that fall from your eyes and cover your face. It's the ones that fall from your heart and cover your soul. ~Unknown


Words to live by: Life is about making memories. Don't get so absorbed in making a living that you forget to make a life with your loved ones. They cannot enjoy you from their grave.

10/30/2011 07:27 AM  Top
dmanflan
dmanflan
 
Posts: 1516
Group Leader
I'm an Advocate

Hey Bsybee!

I'm so sorry that your father has made his decision the way he has! I've been where your father is, although without the edema/ascites (fluid buildup). It is a dark place that makes it seem like there is no way out. I hope you can find peace in the fact that you have done everything that you can and now all you can do is follow his wishes. I'm sending positive thoughts and virtual hugs your way.

Dennis

Dennis

I am NOT a doctor or lawyer! The information that I share is from my own experiences and is to be considered as hearsay advice only.

"Outside of a dog, a book is man's best friend. Inside of a dog it's too dark to read." -Groucho Marx

Check out our website http://MySickLiver.weebly.com for lots of liver information.
(copy and paste to a new browser window)

10/30/2011 01:46 PM  Top
IronCelt
Posts: 306
Member

Hello, Bsybee--

I'm sure it's a terrifying feeling to be watching your father suffer and see him make decisions that don't necessarily match your preferences. My cirrhosis is at an earlier stage, but it really helps me try to clarify my thinking about important life decisions when I read comments/stories like yours. Thank you for sharing and helping me negotiate this difficult disease.--

Mo

Sincerely, Mo
***********************************************
Remember, I am not a doctor, just the master of my own illness(es).

10/30/2011 04:13 PM  Top
mpmom
mpmom
 
Posts: 3275
Group Leader
I'm an Advocate

Bsybee,

I'am sorry things have gotten to this point.

I do understand how hard it is. I thought I was prepared when my mom passed (She had been sick for such a long time) But you're never really ready.

The best thing I can tell you is to hang on to every good memory you have.Let the Bad ones go they serve no purpose.

You are welcome here. You and your family are in my thoughts and prayers.

Gail
Good friends are like angels.
You don't have to see them to know they are there.
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