Too many unanswered questions.

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pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/14/2010 11:47 AM (GMT -7)   
Hi first time poster.  On Aug 17th my husband of 20 years finally agreed to go to rehab for his drinking.  We were told he needed blood work first.  I brought him to the ER for the blood work and they admitted him to the hospital. His ammonia level was 97.  After 2 days of them telling me he would be ok and would go to rehab in a few days they told me to call in our family because he was terminal.  He has Hep C, his liver is dead, his kidneys are shut down and he has gall stones.  His stomach and testicles are very swollen.  His urine is the color of tea.  He refused to take the lactulose and kept pulling the IV out.  I had to make the decision to stop any treatment and give him comfort care only.  We were in the hospital until Sept 2nd when they moved him to a nursing home.  I was told on the 11th he had 3 days to live.  His urine is now back to normal color and his testicles have went down.  Now he has been spitting up blood.  The doctor only comes every 2 weeks and the nurses can't tell me why things are changing. Does anyone have any experience with this or can help answer my question?

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/14/2010 11:54 AM (GMT -7)   

Hi Pickels,

I want to welcome you to the forum.  I'm sorry you and your husband are going through this...especially after he made the comittment to clean up.  There are a lot of people here who have firsthand experience with what you and your husband are going through.  I'm not one of them as I have a different liver issue but the others will surely chime in soon.  Connie, one of our moderators, will be on later today so she'll definitely write. 

Please take care of yourself whilel you are taking care of your hubby.

Hugs, 


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/14/2010 12:22 PM (GMT -7)   
Hi again!
 
Sorry about my quick reply, I had a timer about to go off.  I do have a few questions for you.  Who told you that you should call the family, etc?  Did they run any other tests than just blood work?  Has your husband been seen by a hepatologist?  He NEEDS to see one.  A hepatologist is a specialist in liver diseases.  They aren't only GI docs.  It sounds like maybe his liver isn't totally 'dead'.  Perhaps when he stopped drinking was pretty good timing.  Maybe not the best but maybe not terminal either.  It sounds like he has esophageal varices.  He should definitely be seen for that ASAP as those can be treated by banding (and other procedures).
Granted, your husband as to want treatment and maybe he can still recover and possibly be transplanted but that's something he'd want to do.  I've learned from this site that he would need 6 months of documented sobriety so AA classes if he is well enough to go to them.  He really does need to see a hepatologist though.
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/14/2010 1:05 PM (GMT -7)   
I was first told to call in the family by the nurse practitioner at the hospital. Then a few days later the GI doctor told me it was terminal and she called in Hospice. Two different surgeons told me he would not be able to survive any type of surgery. They did do a CAT scan of his liver and said it was definitely dead. He is only 52 and has been drinking since the age of 17. He has been drinking very heavily (2 fifths a day) for the past 5 years. He also has a left antipated leg and has had his right hip replaced twice. He has been on Methadone for the past 22 years for pain. He is so swollen he is not even able to sit up or roll over. He was humiliated by what happens with the lactulose and when they told me it would not help improve his condition I had them stop all treatment. The GI doctor told me she could drain his stomach one time only and that by doing it it could cause him to pass during the procedure. He is 6'3 and weighed 202 lbs when he was admitted. After 1 week in the hospital taking lacatose and the IV drip he was 257 lbs. He is much heaver now. When we have to clean him up he screams from the pain and when we roll him on his side to clean the sheets it leaves deep finger marks in his skin. They are giving him liquid morphine by mouth and adavan crushed in applesauce. I feel so helpless.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/14/2010 4:04 PM (GMT -7)   

Hello, Pickels, and welcome to the forum.  I'm so sorry that your husband didn't stop drinking sooner.  At this point, it may be too late.  I do agree with Dany that he needs to be seen by a hepatologist.  However, if Hospice is now involved, he will not receive any treatment and the NH may not even want to have a hepatologist see him.  It does sound like he has bleeding varices.  Banding is the usual treatment for that.  Again, the "comfort measures only" decision may very well preclude doing that.  I'm guessing you said one of his legs is amputated.  What was the reason for that?  There is much that could have been done if he had sought help sooner.  Now it sounds like he is in really bad shape.  He could well "bleed out" from the bleeding varices.  So request a hepatology consult (one to come to him) and see what his recommendation is.

The purpose of the Lactulose is to rid his body (especially his brain) of ammonia.  High ammonia levels will cause him to become agitated, confused, "totally out of it," may not recognize you or others, and even hostile.  Nobody likes taking it, but the alternative is worse.

We have more caregivers, spouses, and family members here than we do patients, so you will receive a lot of support from them.

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

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/14/2010 4:45 PM (GMT -7)   
Ok Pickels... take a deep breath... is the GI doctor a hepatologist... if not... need to get one... listen to the Moderator... she knows her stuff.. if you have time read the thread "The other side of no treatment" that my partner and I's story... he died April 22nd this year... very sorry you are going through this...I did not have to suffer through what the two of you are... please take care of yourself in this chaos... take a breath... step out of the room... talk to people around you who support you... and take a deep breath... my prayers and thoughts are with you today... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/14/2010 4:50 PM (GMT -7)   
It's tought making that decision to give comfort care only... very tough...I was fortunate that Mike had put a Medical Directive together... but it takes courage... to do something like that.. even knowing that I was following what Mike would want I felt guilty.... when we pulled all treatment... I felt guilty... I did not wait as long as you have... he passed quite quickly... but it is a tough tough road right now.. and I do so feel for you ... having just recently gone through this ordeal myself... and still not recuperated from it... take care of yourself.. step out of the room if you have to... leave for a while... you need to center yourself as best as you can... sorry for posting twice... my heart is so with you right now.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/14/2010 6:24 PM (GMT -7)   
Pickels, I am so sorry for what you and your husband are going through. I hope you have other family members there for support. I'm glad you found this site. As you can see there are many helpful knowledgeable people here.

I'll be praying for you and your family.
Butterflythree
 
There is always hope!

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 2:30 PM (GMT -7)   
Thank you all for the replies. I was told no need for a hepatologist that it is way to late. He can not even speak anymore and just stares and tears run from his eyes. Why is it that people have compassion for dogs and cats and put them to sleep so they won't suffer anymore but are worried about overdosing a person. I feel so helpless.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2010 2:43 PM (GMT -7)   

Pickels, is hospice still involved?  If so, they are very good at pain management.  If he's in pain, they can take care of it.  Towards the end, if he is having trouble breathing and they can tell he's going to pass very soon, they will give morphine  Some nurses will give a little more than necessary.

I'm really sorry that he and you are having to go through this.

Big hugs,

Connie


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

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 2:52 PM (GMT -7)   
Thanks Connie.  No Hospice is not involved.  When the doctor at the hospital decided he needed to go to the nursing home they were not aloud to continue helping us.  The pastor still comes to visit him but just as a friend.  They have him on oxygen and started today giving him shots of Adavan because he can't swallow now.  He will not eat or drink.  He keeps getting hiccups off and on and his breathing is not good.  The doctor did increase his morphine patch today and they are giving him the liquid morphine every half our now.  He has started getting aggravated and talking his cloths off and throwing everything out of the bed.  I pray the end is soon.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2010 3:38 PM (GMT -7)   
It sounds like the end is near, Pickels.  But hospice could've been called in.  They work with NH patients, too.  My aunt had a hospice nurse and their involvement when she was in a NH prior to her death.  At any rate, it sounds like they are doing what they can.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 3:46 PM (GMT -7)   
Connie I lost my job in Feb and have not been able to find one since. All we have is DH medicare and social security. The NH says if hospice comes in I will have to pay. We rent and I have no income. I have made arrangments to move in with my sister in another state after he passes. My sister is 66 and I am worried about putting too much stress on her but there is nothing else I can do. Every where I have applied for help says they can't do anything for me because I am in the middle. I don't have any minor children and I am not old enough to receive social security yet. My mother in law has a small burial policy so at least that will be taken care of.

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 3:49 PM (GMT -7)   
Sandi I did read the story of you and Mike. You are so brave! I am barley able to handle this. I feel like I just want to run away and hide until he passes.

Lucy05
New Member


Date Joined Sep 2010
Total Posts : 7
   Posted 9/15/2010 4:18 PM (GMT -7)   
Pickels-
I am very sorry that your husband is so ill and that you are having to watch him suffer. Hang in there, you are stronger than you know and you can make it through this! I am new to this forum also, and it has been very helpful to me. My situation is different from yours, but just know that this forum is a great place to vent, and the people here are so kind and are a wealth of knowledge. Please keep us posted.
Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2010 4:47 PM (GMT -7)   

I really don't understand that, Pickels, unless it's different in different states.  Here in FL, hospice never refuses anyone because of inability to pay...and Medicare also covers it.

I know you must feel really hopeless right now.  If you are 59, I believe you can qualify for survivor's benefits.  Please do check into it with SS.  It's good that you've made arrangements to move in with your sister.  Perhaps her state will have more job openings.

Hugs,

Connie


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

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 5:14 PM (GMT -7)   
In Tennessee medicare will only pay for one or the other. The NH does not like for hospice to come in. Medicare paid for hospice when he was in the hospital. NH is telling me if he lives past 20 days that they will have to take his social security check minus 50.00 for his personal things to pay what medicare does not pay.

I am only 48 so I have a long time to go before survivors benefits. We moved to TN after Hurricane Katrina. Most of both of our families still live in the New Orleans area. My sisters are also having a hard time finding jobs. I know that I will be ok but its just so hard right now.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2010 6:47 PM (GMT -7)   

If I were you, I'd call Medicare and check on that.  I have been in a NH/rehab several times when I had hip revisions and I thought Medicare paid 100% for the first 90 days, or something like that.  How long has he been there now?  Don't assume the NH is right.

Hugs,

Connie



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

Post Edited (hep93) : 9/15/2010 8:06:26 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/15/2010 8:14 PM (GMT -7)   
Pickels,  my brother was in a nursing home...........They wanted me to use their hospice.......they didn't want me to call in a difference hospice.  But I did because I had used them for my husband.  
 
The nursing homes don't like hospice to come in because then they would have to do their jobs right.  The meds  as ordered, foods, and baths and bed changing etc. 
 
The hospice that I called in did not get paid.   They did it for free for my brother..   Medicare paid the nursing home to take care of my brother but hospice came in free.  They just gave the orders.......the nursing home had to do the work.   So that nursing home is propably lying to you they don't want hospice called in.   My advice to you is to call hospice yourself see what they tell you.  
 
By the way .......like your name.......my nephew's nick name is pickels. 
 
Take care........thoughts and prayers.........   
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.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/16/2010 4:58 AM (GMT -7)   
You may need to move to where the jobs are.... or retrain... You still are to kind... and yes I wanted to to the same thing... and when he went into a depression... after being told "no treatment" I was what they call well it's a bad name... I told him as long as he had life in him he could get up and do things for himself.. cuz I was going crazy treating him with kid gloves.. heck he listened!!... he got up and cooked for himself... he was independent until the day he died... course he never told me the extent of all his symptoms... he feel a few times I didn't know about..but yes... I felt that all the way through... wanted it over... but wanted him there...
the aftermath of this is almost as difficult to endure.. if you are dependent on the person for income... I have a job... but he paid a good portion of the household bills... so I have to move... this month... and I can barely handle the depression... it's overwhelming... so the issues don't just go away... the emotional pain is a constant... and somehow you keep going forward... with me it's faith.. and that's all... cuz every day is a struggle... but Pink Grandma assures me someday it'll get better and I believe her... and keep truckin... take care gal... thoughts and prayers are with you today.. Sandi

pickels
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/17/2010 5:00 AM (GMT -7)   
Thank you all for your suggestions. He passed away yesterday morning at 7:18 am.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/17/2010 8:53 AM (GMT -7)   
(((( Oh pickels)))  I am so sorry for your loss.  Nothing I can said right now is going to make you feel better.......Please know lot's of thoughts and prayers are with you during this time.............Please come back when you are able.  
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2010 10:39 AM (GMT -7)   

{{{{{{{{{Pickels}}}}}}}}}}  I am so sorry.  We will still be here for you, so post whenever you like.  I have to say that I'm relieved he is no longer suffering, and I'm sure you are, too.  May God be with you in your grief.

Hugs,

Connie


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

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/17/2010 11:13 AM (GMT -7)   
Pickels... my email is in my profile... email me and then I can send u phone number if you want to talk.. very sorry for your loss... I have no words... my thoughts and prayers continue to be with you... Sandi sad sad sad

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/17/2010 12:21 PM (GMT -7)   
Pickels, I am so sorry for your loss.

My thoughts and prayers are still with you.
Butterflythree
 
There is always hope!
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