end stage liver failure part 2

Welcome to the forum Chistiane, My husband has hep C and cirrhosis. I started researching when my husband was diagnosed with cirrhosis about a year and a half ago. I found this site and I have really learned a lot. Coming here has also made it easier to vent. It is very helpful to talk with others that understand what you and your loved ones are going through. I know how you feel. There are times that all I want to do is cry, but I have to hold on to hope. That is what you need to do. I will pray that your Dad makes the transplant list and is soon on the road to recovery.

Take Care

Chistiane I just wanted to welcome you to HealingWell also. I am sorry that your dad has this awful disease. I know it must be very scary for you. But you are doing the best thing possible by getting educated about it. If you have any questions just ask. We have very knowledgeable compassionate people on this forum. Hope you find a nice house close to your parents. Have a safe trip. Thoughts and prayers.

Ranger, I am so glad to hear that you are feeling better. Thank you so much for your words and your prayers. As it is my husband that is suffering from this terrible disease, hearing you talk about your wife makes me happy. You also give me hope that one day my husband will be free from this illness, and we will be able to enjoy life together for many more years. As always, you are in my prayers.

Ranger   What a wonderful encouraging story.  My husband has End state liver disease.  I try so hard to remian hopeful but some days its so hard.  He still is not on the transplant list and his MELD score is med 20's.  He is getting weaker by the day and all of a sudden is having more fluid problems.  We thought we had it under control but now something else is going on.  They will not put him on the Transplant list until he finishes a 6 to 8 week course on coping!!!  I know for a fact he can not sit in a class room for 4hrs a day 5 days a week.  I was wondering what your MELD score was when you received your liver!  From what I understand people wait for year.  I know he doesn't have years.  But as I said I still have hope.  It is the only thing that keeps me going.  Again thanks for your message of hope.

JoAnn

Good morning all,

 

    Once again I am back with an update on my mom. She has now been in the hospital since Jan. 3rd and gets to come home today. There is not much more to do for her. Her liver is failing rapidly. We will soon start working with hospice. Her ammonia levels will not come out of the 90s, she is retaining fluids in her abdomen. They have taken her off of her lasix in hope that she would stay hydrated and her levels would come down.  Seems the only way her levels come down is if she is on IV fluids. But even finding a vain is hard. She now also has liver pain, they have done an ultersound and there are no tumors. She knows she is dying and just wants to come home and be with us. Strange I never thought I would be talking to my mom about her furneral, and what she wants to happen. Because of how bad her lungs have also gotten she is totaly off of the transplant list, they say she would never survive the surgery. And if she did she more then likely would never come off of the respirator. She has to have 4 to 6 neb treatments a day plus her inhalers. They are also talking about haveing a O2 tank here at home. I will be talking with her docs about draining some of the fluids off to her her breath easier. They have only kinda given us a time frame, saying she more then likely will not be here by next christmas if she even makes it to the summer at all. My daughter is in the musical Guys and Dolls and I know my mom realy wants to watch her in it, and that is in March. But for now we just take it one day at a time and go from there. Thanks for being here.

 

Peace,

Jamie

Jamie I ditto everything that Shelly just posted. Spend as much quality time with your mom now. Ask her all the quirky questions that you have now. Like family history, like her favorite things. I have had so many unanswered questions over the years that I didn't ask my own mother before she died. Let her know how very much she is loved by everyone.
Lastly let her know that she has a host of friends here on HealingWell prayering for her and also for you. Take care Shelly....And as always my thoughts and prayers are with you and your mother.

Jamie, my prayers are for you and your mother. Ditto again on the above posts. I did not get a chance to say and do all the things with my mother that I now look back and wish I could have. She was a parapaligic, but still was able to travel with friends. I wish I could have made a trip to Nashville with her to the Grand Ol Opery, which was one of her favorite places to go. She passed in her sleep one night, 23 years ago. She was only 47, which is younger than I am now. Cherish every moment. I also went to my dr. for years starting at 38 and was told everything was fine. In Jan. 06 I had to go for back surgery and found out about my liver. I had been to my dr. just 6 months earlier and was told that my enzymes were elevated and if they were still that way on my next visit I would be sent to a specialist. What a shock when my surgery was delayed. I was depresed like never before when I found out. I started looking on the computer to find out what I could about this disease, thats when I found this site. I read posts for a long time before I ever posted my self. I learned alot from searching and asking alot of questions ( mainly my wife asking the questions). We would make lists of things to ask while we were at the drs. I had a meld score of 18 when I was listed, and was very concerned when they told me that B blood type was rare in my state. But ended up being a blessing, since there was only 2 of us in my state that was my type. Blood + and - do not come into play in matching of the liver. When I got my call I was still working, or as best as I could, but they told me I was second in line for the liver they had. Twenty minutes later they called and said come check in. That was " favor" for me to get bumped up to receive my organ. When I first got tested they gave me 2 years to live, they wouldn"t do a biopsy, thinking that I would have complications from that. I was told to keep my bags packed, and stay ready. I wasn't nearly as ready as I thought I was when the call came, but everything just had to go on hold that wasn't ready. Waiting and not knowing when the call would come or if it would was the hardest part of all. I stayed very busy doing things to keep my mind busy. I got angry often, thinking that they should push me up on the list, or why do I have to wait so long, or especially, why aren't there more donors? Well I guess I should close, I have gotten long winded. My prayers and hope go out to each of you, and continue to keep the faith. Today I feel like a "burningbush" I am a miracle, and acknowledge it. GOD is still in the miracle business. Peace to each of you.

 Big question of the day, my mom has started vomiting, should I be worried?

 

 

Peace,

Jamie

Pink Grandma,

 

  I could not realy tell you how long she has been taking lactulose now. Think if I go back to my first postings it is somewhere in there when the docs first started her on it. They just keep uping the dose. She is haveing to wear diapers now since her bowels are so loose. She started throwing up yesterday A.M. and it was like 3 or 4 times. It is now 7:00 A.M. the Wednesday and I have not seen her yet. I went to bed early last night. So I am not sure if she threw up more or not. We had home health care in yesterday and today their Socail Worker is coming in today and then OT and PT. She was also staterd on O2 yesterday. They also incressed her lasix to 80mg a day now. I just wish somebody would have the guts to tell me what kinda of time frame we are looking at. When she left the the nurseing home her amona levels would not come out of the 90s. I dont believe she will be here next christmas. I would like to be able to bring her best friend back up from Okla. to see her and she wants to stay till the end. They have been friends since I was in my early teens and I am 43 now.

     I do thank everybody for their wonderful post, I am sorry I have not had a chance to answer. We are fighting -45 below winchills right now and also trying to make sure the foals are safe. We have lost one to colic dont want to lose any to the cold. I do keep your words with me. And to remember that it is the illness that is making her this way. Stay warm and be safe.

 

Peace,

Jamie

Jamie, I am so sorry to hear that your mom is failing so quickly. You may want to send for her friend soon. My mom was in a similar situation with the increases in lactulose, PT, diapers, and more and more confusion. She was falling down and finally unable to do anything for herself. If you find that it is too difficult to care for her at home PLEASE consider having her admitted as an inpatient at hospice. We did and it was the best thing for her and for us as her family. They kept her painfree and they did an excellent job of caring for her. I don't know about you but I try to be a realist and I felt that my mom had very little time left even tho the Dr's weren't telling us that. Unfortunately, I was right and she passed away 5 days after being admitted to hospice. So in all Pink Grandma is right and I might add that she and a few others were there for me when I needed them. We will be here for you too. God Bless

  Shelly

Jamie, my mom did similar things. We let her stay in bed as much as she wanted to (she had absolutely no energy to get up) and she also complained of being cold all the time. I touched her skin and she really was cold to the touch. We bundled her up in a sweater and sweat suits to make her feel warmer. In truth no matter what we did she felt cold. I called the Dr and she said that we just needed to let her do whatever she wanted, Thats when I knew the end was near. Your moms case may be different but that was our experience. Good luck and I will keep you and your mom in my prayers.

 Shelly

 oops sorry that goes for u to butterflythree

((((Jamie)))), there's nothing I can say to make you feel better I know. But please know that a lot of thoughts and prayers are coming your way.
Just one question? Did hospice order the hospital bed? They ordered husbands and it came the same day. It's just seems too long for the arrival

thoughts and prayers