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Posted 8/25/2007 12:32 AM (GMT 0)
I posted before about my dad being in the hospital with ESLD due to alcoholism. They also found out that he had Babesiosis and Lyme's disease. Well he has been admitted to the hospital again on Thursday.

He really hasn't been eating anything except for having 3 Boost a day and the occasional jello. His symptoms have not really improved since his last hospitalization. He is very lathargic, tired (sleeps almost all day), stomach was huge, no appetite, the diarreah had gone away but he wasn't eating, his mind is still pretty sharp but it takes him awhile to answer you. The night before he went into the hospital he said he had stomach cramps and his face was swollen. He was also hallucinating. He said he saw objects and would reach for them and they weren't there, he also saw people but just shadows.

The doctor in the hospital yesterday was very blunt (in a good way) and told him that he was dying. This was a shock to him. (We knew that he was dying but we never discussed it with him. The doctors that he had seen would never confirm or give a prognosis for how long.) They also said that his bone marrow wasn't working anymore and they were checking his renal function. This morning they drained his stomach and he has been taking the lactulose. He did eat some of the dinner that they brought him.

They keep asking about him signing the DNR which he did decide today to sign it. I don't know if he has yet or not. Hospice is coming tomorrow to talk with him, my sister and I. He does not want to go into a nursing home and he really doesn't want to be in the hospital.

Can anyone tell me from their own experiences what they think on his prognosis and what to expect from here. I know that every situation is different but just hearing others thoughts would be appreciated. Thank you all so much.

Amy 

 

Posted 8/25/2007 3:20 AM (GMT 0)
Hello Amy, When doctors are telling you to call in hospice the prognosis is not good. When the doctors told me to call in hospice my husband lived for 3 weeks. Now all along I kept asking them how much longer. They would not even tell me until I badgered his cancer doctor. He finally said 3 months to 6 months. That was about 1- 1/2 months before he died. Hospice was great. My husband had 4 different people involved with his case. 3 of the 4 were great. The 4th one was in the wrong profession. For me hospice was a lifesaver. I had no help and near the end I was so scared and lonely. They kept me sane and strong enough to get through it.
My husband died at home with all his family there. I could not imagine going through that at a hospital. My husband's amonia levels seemed to sky-rocket the day before he died. I couldn't get them down. He stopped going to the bathroom and finally he went into a coma and pasted away about 12 hours later. My thoughts and prayers will be with you and your family.........Pink Grandma
Posted 8/25/2007 10:30 AM (GMT 0)
hi pink grandma and amy,
                 i can't find the page i was posting on about my ex husband??? i want to see how everyone out there was. pink grandma, my exhusband is a mess, his sister told me yesterday that he can't even be tapped because he could die? i didn't say anything but i assume that means they can't drain him? she also said that social security is calling wed to do a phone interview and she said she will be speaking to them...i'm going to have to go there she said to apply for benefits for my daughter at some point? our daughter is going to be 16 in october....

                 my ex has started going to AA meetings because he is trying to get on the donor list, i am confused because they(whoever that is) said he will go to the TOP of the list if he completes the meetings? there is nothing they can do for him at this point??????????????? i might be nuts but he is not even in the right frame of mind, he forgets from 1 minute to the next BUT you can't even get on the list unless you PROVE you don't want to drink????? trust me, he's probably not even awake for the meeting!!! these patients are lethargic 90% of the day, they never want to ever drink but at their weakest point you have to PROVE this??? going to these meetings doesn't prove anything.... he will never make it for the completion of these meetings, he is winded beyond belief, 60 pounds of water (can't be tapped), anemic and Hep C?

               i'm sick from just knowing this and i can't imagine how it feels to be around this all day because the word HELPLESS doesn't begin to explain how i personally feel....AMY MY HEART REALLY GOES OUT TO YOU AND YOUR FAMILY--I KNOW THIS WILL BE THE SAME FOR US SOON...PINK GRANDMA, THANKS FOR THE WORDS YOU GIVE TO ALL THE FAMILIES ON HERE---WRITE BACK
PAULA

Post Edited (paula1965) : 8/25/2007 4:29:25 AM (GMT-6)

Posted 8/25/2007 11:31 AM (GMT 0)
Thank you Pink Grandma. I am so glad to hear how great hospice is.

Paula, so sorry that you have to go through this. I hope that your ex would be able to go into meetings. My dads liver doctor told him that there was nothing else that he could do for him. He said that he could keep his next scheduled appt with him if he needed. My dad, with his drinking (sober since middle of July) was told that he is not a canidate for a liver transplant. Now they are just trying to get levels ok for him to go home, I believe. Yesterday they got his ammonia levels down to  97.7, and his blood pressure had finally gone up.

It is really hard to be around. My dad was planning on retiring soon. Well this isn't the retirement that he dreamed of. He has a beautiful piece of property with lots of acreage that he loves to take care of. It's just really sad to know that he won't enjoy it like he should. My dad's ex-girlfriend from years ago came to visit him and said to just let him drink again. Part of me wants to let him because he was always happiest when he drank, but I am afraid that it would start to cause him pain (he has no real pain now just discomfort). Oh and I am sure that other family members would look down at that. I just want him to be as comfortable and happy as he could possibly be right now.

Amy

Posted 8/25/2007 2:25 PM (GMT 0)
Amy,
don't feel bad for thinking about letting him drink--i thought to tell my ex the same thing. of course we would never do that BUT they really where their happiest being like that. i know my ex was never a nasty drunk, he liked how he felt when drinking? i'm sure your dad like my ex has NO desire to drink but it seems they have so little quality of life....does it really matter at this stage? he will never live long enough to see the top of any donor list...meetings or no meetings --i know he did this to himself because thats what EVERYONE SAYS but these people are still our family. this illness hit him like a mack truck and it backed up to make sure he was down!! overnight his life was altered? like with many diseases its a rolller coaster ride every day, i just wish i knew when it wil end. he's not in a hospital because he won't stay, he felt like he was in prison, only being sedated and poked occasionally is not for him. i'm so sad for you and your dad and anyone who is going through this----i'll check back later---amy, what state are you in? i'm in nj back outside for me, i'm taking my frustration out on the weeds and rose bushes!
paula
Posted 8/25/2007 2:56 PM (GMT 0)

Amy, I agree that if they are suggesting Hospice, then your dad doesn't have much longer to live.  Hospice can come to the home, so he would not need to be in the hospital or a NH.  Most likely, he will slip into a coma and die.  It really doesn't sound as though there is anything the medical profession can do at this time to extend his life. 

Remember, we are always here for you.

Hugs,

Connie

Posted 8/26/2007 3:59 PM (GMT 0)
sad  hi amy, it always hits home when somebody is so down in the dumps about a parent who they know they are going to lose very shortly.

 i lost my father last december of 06 with end stage liver failure, we didnt even know anything was wrong with his liver untill july of 06. 

 i got my father home a couple of times needless to say he was back in the hospital, within the 6 months that he suffered he was in and out at least 9 times thats not counting the trips to the ER.

 towards the end of my fathers illness his ammonia levels were up and down even with the lastouse it wasnt even working any more. he sliped into a coma overnight in the hospital and was bleeding, thats when i said to the dr that enough is enough please just make him comfortable and let not poke on him anymore, the dr agreed so the hospital did they called hospice in at the last minute because we thought we could bring him home but he never made it. he passed with family at his bedside on december 18, 06 at 12:34 pm.

 this is a horrible disease i kid you not you go through it almost like you have the disease, it takes everthing you have and more, i think i aged ten years over it because its hard to watch and be so helpless.  it will be hard to take of him at home it takes a lot of work and if he cant move very well or get up and go to the bathroom then you will need a lot more than hospice, more family members to help.

what makes me angery is my father didnt even drink my father didnt touch a drop for 25 years and then he was never a drinker. we think it was from working in a chemical factory for 30 years, they had it down as unknown orgin. my thoughts are with you and your family we know what you are going through my prayers are there also. thats pretty much the way it happens everything stops working and they slip into a coma.

good luck amy you can just take it day by day. confused

 annette

Posted 8/27/2007 2:28 AM (GMT 0)
Annette so glad to hear from you. How are you doing? You told it like it T I is. And that's all anyone can do is take it one day at a time. To think too much on all the things that need to get done or what may happen in the future gets too overwhelming. Not to mention that the patient,who is really not themselves anymore get very cranky and demanding. Since it was my husband dying, and not me I am not sure exactly why they don't seem to appreciate all the things that are beening done for them. I kind of think that fear had alot to do with it though. If I was scared sh...less, I know my husband was more scared than me. He had to be.. as it was him dying.

Paula, with some of the transplant programs it is part of the must do's is to go to AA if the patient had a drinking problem. My husband had quit on his own about 2 years before they told him that he had to attend the AA meetings. He was upset, said he didn't need it. But he went. He ended loving it. He was trying to help the younger people by telling them his story. He was hoping that he could at least get through to one person about the dangers of drinking . He even kept going after they took him back off the transplant list. When I told him that he didn't have to go anymore he said " I am not going for the doctors, I am going for me." I cried, he had finally got it! And make sure that you applied for SSN benefits for your daughter as she is entitled to them if your ex get's them or if he dies. I got them when my father went on SSN Disability and then when he died I got more. Hope everyone has a good evening. Thoughts and prayers for all.......Pink Grandma
Posted 8/27/2007 1:22 PM (GMT 0)
hi pink grandma, i,m doing find thanks for asking. how about you? we all have been through a lot over the last year. i would say a lot of times they are not themselves, but when the ammonia levels are down not to bad. my father would hide his lactouse ( spelling) not taking it. nobody even mentioned hospice for me, and no chance for a transplant he was to old. i was trying to work just partime every time i would start something would happen. i gave up two jobs one was partime at a post office and another one at a school system. so when he passed away i didnt have anything to go to so i could keep my mind going and not thinking so much. now i,m starting where i left off learning to drive school bus the driving not so bad its going to be the test. its hard to get a cdl in ohio very strict, have to be because of kids. i have to work just can not sit, wouldnt matter if i had money still would have to do something, this summer i had my hands full taking care of two acres trying to keep things neat out side. we cant crawl in that hole with them life goes on and we have to go on with it. i would tell people to ask questions a lot, dont let these drs run out of the room corner them and if you have to go over their heads, u have to demand answers. sometimes you have to live at the hospitals to make sure they are getting good care.
i read posts 2 or 3 times a week try to keep up with things, i have learned a lot from this forum things i wish i knew when he was sick but didnt. i truthfully did not know how horrible this disease was.
well time to go and do some studying and house work and yard work.
amy you take care and ask a lot of questions.
pink grandma you take care to, have a good day.

annette
Posted 8/29/2007 2:38 AM (GMT 0)
Well my dad came home yesterday. My sister worked so hard at getting a room in the down stairs ready for him. It looks awesome, she did an excellent job and he really seems to enjoy it. We had a hospital bed delivered and set up as well and they left a walker for him. He seems to have already fallen back into the not eating. He did really well eating in the hospital.

On Sat. they gave him 2 units of blood. The doctor told him that his levels went up so that was good news for him. Sunday night he looked pretty good and sounded good. It didn't take him so long to answer questions. Today, though, he looked pretty bad. His stomach is leaking from where they drained the fluid from his stomach on Friday. Is that normal? His stomach seemed to be getting bigger quicker this time after the draining too. I feel like the doctors are confusing him. Thursday he was told that he is dying and that there is no chance that this is reversible, then another doctor told him maybe in 6 months he could have a transplant if he stayed sober. His liver doctor already told him that he is not a candidate for a transplant and that there was nothing else that he could do for him but he could keep his next scheduled appt. with him if he wanted to. The consensus is that he has less than 6 months. He doesn't want to take the lactulouse at all. He hates the way that he feels from it. I don't blame him. Hospice came out to the house today. She was very nice. We have to watch his blood pressure and heart rate (and I don't even know how to do that). If it is below a certain point, he can not have his nadolol and I think the lasix and other diuretic.

He has to have someone with him 24 hours a day. So we will be trying to figure out schedules for us all. It will be hard. I have two small children, my sister is going back to work for the first time in 7 months (she just finished radiation and 3 rounds of high dose chemo for tonsil cancer in June) and one of our brothers has is a firefighter and has a lot of his own issues about everything. Our other brother lives a few hours away so it will be hard for him to get here. I think we will end up having to hire a nurse for some of the time. I know that I didn't realize at the time how time consuming it would be to care for him. I am too quick to say I will do it but don't even know what I can or would do with my children. I feel bad for my sister. I feel like everything is falling on her shoulders. She is the health care proxy for my father and she is doing the best job. I wouldn't want to be in her shoes.

I just want to thank everyone for being here to listen and thank you to all of you that share your stories and wisdom. It really does help to hear it all.

Amy

Posted 8/29/2007 3:22 AM (GMT 0)
Hello Amy, Your father is probably glad to be back home. On my husband's good days he loved having our granddaughters who were 4 and 5 over. He did tire out quickly, but it did him good to interact with them. So maybe if your father is having a good day you could bring over your children for a little while if they are old enough. My granddaughters still talk about their funny papa everyday. That does my heart good. I don't want them ever to forget him.
And yes it is alot of work taking care of any sick person. But if you have kids and/or a full time job it gets overwhelming fast. Thinking back on it now I don't know how I did it. And I hope to God I never have to do it again. It did however teach me compassion. Before he got sick I didn't have a whole lot of it for anyone. A nurse would probably be a good idea. Check into your dad's health insurance. It maybe covered under it. Have a good evening. :-) Pink Grandma
Posted 9/7/2007 7:33 AM (GMT 0)

Hi, I just want to thank you all for the wonderful support. My dad passed away last evening at 11:57 pm. Time of death was posted for 1:20 am though when the hospice nurse arrived. Thankfully he never seemed to be in any pain. My sister was able to be with him right up till the end. He was in a coma for the last few days but I still think that he was trying to respond to us. He was a great man and will be missed dearly. Again thank you all so much and my thoughts and prayers will be with you all.

Amy

Posted 9/7/2007 3:19 PM (GMT 0)
sad  I,m so sorry to about your dad, my father went the same way in a coma but lasted a day and a half, this family was with him the whole time. i think he was trying to respond because everytime he heard his grandsons voice he would do things with his eyes, they say that they can hear you. the hospice nurse got there about 2 hours before he passed, December 18th 2006 at 12:34pm thats something you never forget.

my thoughts and prayers are with you and your family. one more thing he is not suffering anymore from that horrible disease. please let us know how you are doing from time to time. sad

Posted 9/7/2007 11:15 PM (GMT 0)
Amy, I'm sorry for your loss, but at the same time I think you will agree that it was better for him than to continue suffering for months on end.

Please do let us know how you are doing. Also, your experience with your dad may be helpful to others on this forum, so don't be a stranger!

Hugs,
Connie
Posted 9/8/2007 3:30 AM (GMT 0)
Amy you and your family have my deepest sympathy. This the one step at a time part. Mine were baby steps. I'm almost walking normal now. When you get through this sad time please come back. It took me a while but when I came back it was the best therapy for me and still is. My thoughts and prayers are with you. Pink Grandma
Posted 9/8/2007 2:02 PM (GMT 0)
Pink Grandma, I want to say that without your wonderful support and input, this place would just not be the same. So please stay with us. You are needed here.

Hugs,
Connie
Posted 9/8/2007 11:59 PM (GMT 0)
Thank you Connie. Being here probably helps me even more. I think part of the reason that I came back was I didn't want my husband's death to be in vain. If I can help anyone else with any knowledge that I have learned over these past few years... then to me he didn't die in vain.
Connie I want you to know how much I respect you for you are doing too. You are fighting the battle yourself while you are helping others. You are such an inspiration to me and everyone else. Hugs right back. Pink Grandma
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