Hello everyone

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

NC Mountain Girl
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/23/2009 10:18 AM (GMT -7)   
I have been "lurking" on this forum for a few weeks now, and I must say how welcome I feel here already, despite this being my first post. My father has ESLD from alcohol realted cirrhosis. He was diagnosed over a year ago with the cirrhosis, and stopped drinking immediately. He has not had a sip since his doctor told him to quit drinking. He has been in and out of the hospital for the past year, the most recent was 7 weeks over the holidays.  He has been shuffled from one hospital to another, in search of becomming listed. This has not happened yet, but we are hopeful. He had TIPS done in October, and came home after surgery doing fine. They could not get the fluid under control, and he found himself back in the hospital getting drained almost weekly.  The finally kept chest tube in, and allowed him to go home with my mom, and she drained him once a day.  This went on for sometime, until it stopped working.  The HE came on in full force after Thanksgiving, and he found himself being transported to a transplant hospital about 2.5 hours away from home. He was there for 3 weeks and told he had to prove he had been sober for 6 months before they would even talk to him about getting listed.  They did not take his word (or ours for that matter) that he had not taken a sip in over a year. ( I understand this).  However, they told him he had much less than 6 months to live, so he should just go home and die....there was nothing they could do.
 
Not giving up, we finally moved him to a private hospital who agreed to talk to him about getting listed. He was there for 4 weeks almost, and just got weaker and weaker.  Getting him to eat is a super battle every day.  The transplant team told him he needs to go home and build up strength, b/c he most likey would not surivive a transplant, even if he was listed. His meld score was in the 20's the entire time he was there. Anyways, they sent him home, and my mother is his primary care taker. They have rented a hospital bed, and a lift chair.  He gets out of bed once a day, and goes to his chair for an hour or 2.  He sleeps 22 out of 24 hours. His days and night are mixed up. They want to see him back at the transplant hospital every other week to check his MELD score and drain any fluid from his belly and lungs.
 
My husband, son and I are 5 hours away, but we are going home every other weekend to be with mom and dad, and to give my mom a break. I HATE being this far away, and feeling so helpless.  Mom keeps telling me not to come every weekend, and to try and not be consumed by this.  My son is 16 months old, and into EVERYTHING! While he is such a point of happiness during all of this, he is also a mess, and trying to climb up my dad's hospital bed, and pull his oxygen out of his nose, and etc. It wears my dad out to watch him. LOL.
 
 He has gone from a 65 year old vibrant, working man, to a shriveled up, sleeping, depressed shell of a man in 8 weeks time.  He is battling HE daily, despite taking his Enulose 4 times a day. The biggest battle is trying to get him to eat. Everything tastes bad, and he chokes if he has anything solid. Mom is putting regular food in the food processor to try to get him to eat. He is skin and bones, and has no muscle mass left. His doctor gave him something similar to marinol, but it made him hallucinate terribly, so they quickly took him off of that.  If anyone can recommend a "trick" for improving nutrition, PLEASE let me know.
 
I am here to vent, and share, and just get it out. All of you have been/are going through so much. I am in awe at your grace and attitudes towards life. You all give me hope that no matter what happens, we are not alone. My dad called me after the first hospital told him to go home and die. He told me that he knew it was coming, and though he didn't want to die, he told me that he wasn't scared, and he was not going to concentrate on the bad things. He told me that he had already planned his "service", down to the music and minister. He told me that he was so sorry that he was putting us all through this. He told me how proud he is of me, and my family. He told me to be a good wife and mother to my children. He told me that he did not want me being consumed by all of this. He told me not to cry in front of him b/c he can't stand it.  That was only 4 weeks ago. Now he can't stay awake for longer than 5 minutes at a time.
 
Thanks for listening, and I apologize for the long post. Thanks for sharing all of your stories. God bless all of us. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 11:56 AM (GMT -7)   

NCgirl, I am on my way out for a hair appt., but wanted to welcome you to the forum.  I will be back later to comment on your post.

I'm glad you found us.  :-)


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 1/23/2009 3:38:56 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 3:38 PM (GMT -7)   

I'm back!  smilewinkgrin    It sounds like your dad has really been through the mill.  The thing about transplants is that they want a person to be really sick, but not so sick that they won't survive the surgery.  It's a fine line and a balancing act.

Has anyone tried to give your dad liquid supplements such as Ensure?  Puddings?  Milk shakes?  Smoothies?  Ask his doctor about Periactin.  It's an antihistamine, but also used as an appetite stimulant.  If he stops eating altogether, it's a clue that his body is starting to shut down.  Look also for scant urine output and very concentrated urine.  The kidneys shut down before one dies.

You do have your hands full with a 16-month-old!  I wish I had some of his energy. 

I hope these tips have been of some help to you.  We are all here to give you support, so feel free to vent at any time.  I hope you will also find some useful information on this forum.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/23/2009 3:47 PM (GMT -7)   
Hello NC Mountain girl and welcome to HealingWell. I sure wish that you didn't need to here but am sure glad you found us. This here forum saved my sanity in my darkest hours......the ability to communicate with others either going through or been through the road that your traveling on now, is priceless.

I can relate to your mom.....as my husband went through some of the same stuff. It's great that you go visit and try to give her a break every other weekend.......even if she says no still do it......she needs a break every now and then or she will find herself in the hospital......she also needs someone to talk to about all her fears that understand what she's going through herself. I can tell you from my own experience ......it almost killed me. If she has a computer .....tell her about us......she would be more than welcome here.

Usually transplant centers want a former drinker to go to AA for a specific period of time before they list them.......My husband had quit drinking for 2 years but he still had to go for about 3 months before they would even consider listing him.

Vent all you want......we will be your shoulder to cry on.......

Take care......Our thoughts and prayers will be with you and your family....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/23/2009 4:23 PM (GMT -7)   
Welcome to the forum NC Mountain Girl. My heart breaks as I read your posts. There are so many people suffering with this terrible disease. I'm sorry that you family is included. I am really glad that you found us. This place has give me alot of support and knowledge. Without them I would be lost. My thoughts and prayers will be with you and your family as your father battles this disease.
Butterflythree
 
There is always hope!


NC Mountain Girl
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/23/2009 6:07 PM (GMT -7)   

Thank you all so much. It is amazing how much weight is lifted off of your body when you find other compassionate people that can relate to your world.

It's funny, b/c just a year ago I was counting our blessings, and so thankful that my immediate family had not yet experienced any major health problems. WOW....when it rains it pours. This disease is so ugly. I am still in shock at how fast everything has happened. Over thanksgiving, my dad was sitting with us eating turkey, and even making us drinks! I thought, "this isn't so bad...look how strong he is." And then BAM....overnight he became a full invalid.

 

hep- He is drinking anywhere from 1-2 Ensures a day....we make milkshakes with them. But, it is a total battle to get him to drink them. One of his drs said that if we could get him to drink 3 a day we would be doing him a big favor. He says everything tastes terrible and it seems like he has a hard time getting anything down. I will tell mom/drs about periactin....that is extremely helpful...thank you. While he was in the hospital, his kidneys began to fail...they took him off the lasix and aldactone for a few days, and he improved. Like you said, everything is a balancing act. On again, off again. I just got off the phone with my mother, and she said the hallucinations have stopped for the most part....we are hoping they were from the appetite stimulas pills, which they took him off of. Thank you so much for your sweet welcome. I am glad to be here with you, though I wish I didnt have to be.

 

As for useful information in this forum....OH YES! I have learned more here than anywhere on the web. I have skimmed all 45 pages of this forum, and seen how differently this disease affects people....but the common thread seems to be hardship for all. That is so sad.

 

Pink- I know my mother would love to hear some of your wisdom. I have told her about this forum, but she is such a stoic, private person, I am not sure she will check it out. I will remind her about it from time to time. I am adamant about going every other weekend to visit. I would go every weekend if I didn't think it would stress her out (she worries about us driving across the state which increases her stress.....I can't be responsible for increasing her stress.) I put my foot down though when she told me I should just come once a month. He is my daddy. I love him SO much, and my heart is in a million pieces. I want to be with him as much as possible. And, it is such a great break for her to get to play with her grandson and pretend to be "normal" for a little while. Since he is mostly bed ridden, AA is not an option. However, they have found a counselor who is willing to come to the house once a week and "talk" to dad about alcohol. Hopefully that will be enough for the transplant team to see he is trying. Thanks for the prayers and support....I truly will sleep easier knowing you guys are rooting for us.

 

Butterfly- Thank you for your kind words. I am really glad I found you all too. I love your sig quote, "there is always hope." I truly believe that, and it's a nice reminder when I see your posts. All of you are in my prayers and thoughts as we go through this awfulness together.

 

Thank you again for such a nice welcome, and for reading my long winded posts....I will work on that!  I hope everyone has a peaceful weekend. Hugs.

Alice


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 7:16 PM (GMT -7)   

Alice, I love long posts.  It helps to know what you are going through when you are so open.  The more we know, the more we are able to be of help...or try to be.

The Ensure does taste pretty bad.  Has Instant Breakfast or Slim Fast been tried?  They have fewer calories than Ensure, but otherwise have pretty much the same nutrients and taste a heck of a lot better.  I especially like Slim Fast's Chocolate Royal in a can.  With my liver cancer and surgery, I lost my appetite for awhile and found I could enjoy Slim Fast when I just couldn't eat.  I still keep a couple of cans on hand.  Soup is also good....anything that will get nutrition in your dad.  And do ask about the Periactin.  Undoubtedly it was the drug (synthetic marijuana) that caused the hallucinations.  I took Periactin years ago for a rash and there were no side effects.  I don't recall my appetite increasing, but it was so long ago I really can't remember.

I hope the alcohol counselor will be sufficient for the transplant team, at least for the time being.  I was fortunate to have been sober in AA for 6 yrs. when I was diagnosed with hep C in '93.  The program's steps have enabled me to get through a lot of hard times w/o drinking.

Take care and keep us posted.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 1/23/2009 7:19:11 PM (GMT-7)


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/23/2009 8:20 PM (GMT -7)   

Hi Alice

I want you to know we went through the Alchohol mess with my husband and getting listed.  He was so sick all of 2007 and half of 2008.  We did find a counselor that was willing to come to the hospital if need be.  That started the wheels in action.  Also my husband could not stand the ensure or instant breakfast but the smoothies did wonders.  I added Soy Protein (Not Whey) to them.  It was very refreshing.  See if you can get your mother to try different ones until she finds a flavor he likes.  It took a while for that.  I  would even cut up bananas and freeze them.  Also Wal Mart has other frozen fruit that can be used.  I just tossed the frozen fruit in the blender with some ice a scoop of protein (Wal Mart also sells the protein).  I used either Orange Juice or Apple Juice also.  My daughter told me to add yogart but my husband didn't like that.  Also Schwanns has just started selling the frozen fruit in individual packages for making smoothies.  Just make sure you use Soy Protein not Whey.  I hope this helps some.  My husband did get listed.  We still see the counselor once a month (mainly for me to vent).  My husband never touched a drop of alchohol one he heard the word cirrhosis!!!  I know what you are going through just remember you are not alone and there is HOPE.

JoAnn

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 7:35 AM (GMT -7)
There are a total of 2,732,494 posts in 301,027 threads.
View Active Threads


Who's Online
This forum has 151186 registered members. Please welcome our newest member, debbixij.
288 Guest(s), 8 Registered Member(s) are currently online.  Details
John_TX, Bucko, Huddie, Faustmann, Buzzlymeyear, Traveler, trumpet123, (Seashell)


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer