End Stage Liver Cirrhosis

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Sisters2
New Member


Date Joined Mar 2006
Total Posts : 2
   Posted 3/18/2006 6:53 AM (GMT -7)   
Hi, I'm new here. I was doing a search on end stage liver disease.  I want to try to understand my brother's illness.  He is only 48 years old but is an alcoholic who "had it all" and lost everything that was important to him because of his inability to stop drinking.  He has had cirrhosis for 10 years or so.  Now he also has cancer in his lungs, sping, bowel, chest, abdomen, and bones.  But not in his liver, amazingly enough.  He was just admitted into Hospice care.  He has sores all over  his body.  Everywhere.  Weeping, oozing sores.  His feet and ankles look like balloons and they are "weeping".  The sores on his legs are bulging, he looks like he will explode.  The rest of his body looks hideous, he is nothing but skin and bones.  I've seen pictures of malnutritious etheopian kids... my brother looks like that.  He weighs 124 pounds and he is 6'1" tall.  I know my brother is going to die, and I know this may sound morbid, but I need to know what is probably on how he will die.  His sores bleed.  His blood is very thin.  Doctors couldn't even do a biopsy because they said he would have bled to death.  Is he just going to start bleeding from those sores and not stop?  Are his legs going to explode?  Does anyone know what to expect when the liver no longer functions?

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/18/2006 9:12 AM (GMT -7)   

Hi,

Welcome to the forum; this is the perfect place for support and information, hugs and prayers.

I'm sorry your brother has so much on his plate at the moment. It is amazing that the cancer hasn't spread to his liver. I understand how the end stage cirrhosis prevents any invasive procedures or treatment. He will receive comfort care and support through Hospice. I know this is a difficult and painful time for you also.

My husband has cirrhosis for three years and esophageal cancer diagnosed two years ago and untreatable because of his liver. The difference is Gene has done everything possible through diet, lifestyle, supplements and positive thoughts. It is a miracle that he is still here relatively stable and I thank God everyday for the additional time we have together.

Nobody can say how long your brother has; not even the Doctors. My husband went into Hospice over a year and a half ago with a prognosis of six months or less. After seven months he improved so much that he was discharged and we have been on our own for fourteen months.

Hospice will also discuss the signals your brother will give as the final days approach. Be there for him and don't leave anything unspoken. And we will be there for you.

My heart goes out to you,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/18/2006 9:20 AM (GMT -7)   
Hi Sisters,Welcome toHW forum! Glad you found us. you will find a lot of supportive,caring people here. Caregivers & patients with various conditions including cirrhosis.I am in end stage cirrhosis.You will find tons of info here both thruout the posts here from people who live with this disease evryday & in HW rescource centre.Cirrhosis doesn't care how old anyone is or who they are.There are many causes for cirrhosis. Mine is prescription drug induced.Sweetie with cirrhosis although cancer does start a lot of times in the liver oddly enough it is quit common for it to start elsewhere in the body & spread thruout the body & then to the liver. I have to get my liver checked evrery 6 months & then regular cancer checks thruout the body yearly. The reason your brother ankles look like balloons is a condition called edema & your brother appears to have this to the extreme.Is he on fluid pills? Spending most of the time with his feet elevated will help a little. Is his sodium intake reduced? If not it needs to be. I don't know what restrictions your brothers intake is but mine is 500mgs. a day or my feet become as your brothers. Elevating his feet higer than his heart will also help the weeping & lots of lotion to soften the skin will also help the cracking.He will probably die from a combination of malnutrition,hemmorhage & sepsis or from the fluid may go into his lungs drowning him..No his legs won't explode but the skin will crack & leak as his feet do.You might try elevating the with the use of pillows or raising the foot of the bed up about 6 inches. But you need to ASK YOUR dr. about this as it may not be what they advice in this particular case.as this can also send the fluid to the heart & legsWhen the liver stops functioning all the other organs shut down to causing heart failure & renal kidney failure.Yes thier could be hemmorhage but that will be from verices.My heart goes out to you sweetie.My thoughts & prayers are with you & your brother. if you wish to we will be there for you hon.God Bless. later.....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Sisters2
New Member


Date Joined Mar 2006
Total Posts : 2
   Posted 3/18/2006 8:48 PM (GMT -7)   
Thank you Barb and Lerie for your caring support and for the information. I brought him home from the hospital yesterday. When he was admitted a week ago, his white blood cell count was "very high" and his sodium and potassium were "very low". Lerie said we should reduce his sodium intake because of the swelling..... but they were giving him sodium in the hospital to increase his levels. His feet and ankles swelled up four days later.

about asking the doctor questions.... we don't really have a doctor to direct questions to. He was married for 27 years, but his wife could no longer tolerate the drinking and left him about a year ago, their divorce was final in January 2006. He was self employed during their marriage and he just made enough money to get by. He had insurance through his wife's employment, but that ended when they separated and he could not afford cobra. He has not been able to work in over a year. He was just recently approved for social security disability, but that has a 2-year waiting period for Medicare. So what I'm trying to say here, is he has no medical insurance, and he has been too proud to get treatment as a "freebie" patient, so he has had no treatment; until he was forced by his siblings to agree to let us take him to the emergency room of a government hospital where he could not be turned away because of his inability to pay. That's where he was diagnosed with the cancer. He already knew he had cirrhosis. So, he hadn't seen a doctor in years until now. And the doctors at the hospital were whoever was on call at the time, so at this point, Hospice is our only source for medical advice. And don't get me wrong, they are fabulous. I thank God for them every day. Our mother died of esophageal cancer two years ago, and her final weeks were under Hospice care. They are all we have now, I hope they can answer these kinds of questions. But the difference here is my mother was in acceptance of her disease, and she was ready to die. My brother is in in denial. He is taking Dilauden for pain... and he thinks he can get in his car and go wherever he wants to go when he is feeling ok. We have to hide the keys from him. He's a man who has taken care of himself all his adult life, and now we have to tell him what he can't do. That's HARD. He doesn't agree with us about that. And although Hospice told him it would be extremely dangerous if he attempted to drive while taking this kind of pain medication, they did not tell him flatly that he cannot drive at all, ...and that was all he needed. And he cannot tolerate the pain without the medication. He still drinks but he hides it, even though he knows that we all know he still drinks. He wants to drive to the woods, or someplace secluded, to be alone and drink to his heart's content. And I guess it wouldn't be so bad if he got in an accident and hurt himself in the process, but it would be very bad if anyone else was hurt. He insists he can still drive, and he wants his independence as long as possible. And of course, those of us (my dad and me) committed to caring for him do not agree with that at all. But how do you tell a grown man what he can and can't do when he knows he's going to die anyway, so his feelings are that it just doesn't matter. I can't imagine having to put him in a nursing home, but we can't tie him to his bed either.

This is all so hard.

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/18/2006 9:20 PM (GMT -7)   

My dear Sister2,

I don't know how much help I can be with your brothers complex conditions and his need for independence and control. But know my heart goes out to you; I understand what you are going through and I also think I understand where your brother is coming from.

It's difficult enough to get competent medical attention when one has insurance or the ability to pay for services. There are folkes on this site who are on medicade and SSI and getting outstanding care for their illness. But I sense your brother really doesn't want to fight his diseases; he is on a self destructive path with his drinking and there isn't any way to change his mind if he's not ready to take the first step.

And now that he is entering Hospice, he will not have access to specialists such as Hepatologists or Oncologists. They will treat his symptoms to control pain and naseua, etc. Pain medications are hard on a liver with cirrhosis; however he must be kept comfortable.

This is something I've thought about many times with my Gene. If and when his cancer spreads, he will get whatever pain relief he needs even if it hastens his death. For life without quality is not life.

Is your brother a religious person? I only ask because Hospice has Chaplains and social workers who will meet with him and or family members. It might be beneficial for him to takl with someone about his feelings, his wishes and what he wants help with and what he wants to handle on his own. If you are close enough to your brother, you may want to talk with him about everything.

Don't kick yourself because his ankles swelled from the sodium he was given in the hospital. Low sodium and low potassium are life threatening and the hospital did the best they could without prior medical information. Hospice will not be doing lab work as a rule.

Does your brother have encephalopathy from his cirrhosis? This would take the form of poor coordination, mental confusion, poor judgementslurred speech, flapping of his fingers or tremors and more. Symptoms resemble intoxication. It is not safe for him to drive under these circumstances just as it is dangerous to drive under the influence. And of course, pain medication also can affect ones driving. One of the difficulties is that when encephalopathy increases, he may not be aware of the extent and think it is safe to drive.

As long as hospice hasn't said a definite No to driving, there isn't much you can do but hope and pray that no body is injured or killed. At times when you know it isn't safe to drive, you may need to hide his keys or take a firm stand and work out alternate ways for him to get out and still have his independence.

I'm sorry I'm so long winded tonight.

My final word to you is to keep the lines of communication open with your brother; let him know how important he is to you and that you want what's best for him.

Hugs and prayers and positive energy,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/18/2006 9:21 PM (GMT -7)   
Hi Sister, did they give him sodium or pottasium? there is a difference & I don't know about your brothers particular case but in mine they give me pottasium so I don't go back into heart failure.Also again I don't know your brothers case but for me they want pottasium levels higher & the sodium levels lower for the edema & acetis.If they gave your brother sodium of course he's going to swell up again!I completely understand your feelings about his driving & I'm with you 100% on that one.Have you tried informing the liscencing beurea fo transportation & explaining it to them what your brothers circumstances are & your concerns? I would try because it could cost someone else thier lif. If he's still drinking a hepatologist would not be able to help him anyway sweetie.There is nothing that will controll the edema either when he is still drinking. But this is obviously his choice & the pain pills too.My heart goes out to you & your dad sweetie.Well under the circumstances no one can help him but I want you to know we are here for you & your dad if he cares to join us. I wish I had something encouraging to say to you. But I'm truly sorry I don't except to say I am here for you.Maybe you really do need to consider a nursing home or something for him. Please feel free to e mail me anytime if you wish.My thoughts & prayers are with you. Please keep posting here so you are not alone.I wish I was there to give you a hug. I'm sending you a virtual hug anyway. God Bless. later....
 
HiBarb, there are many symptoms for encephalopathy. Some of the symptoms you describe here is the liver cirrhosis itsef & some are encephalopathy.



"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

Post Edited (lerie) : 3/18/2006 9:28:12 PM (GMT-7)


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/18/2006 10:29 PM (GMT -7)   
Hi sister:)
I am so sorry your going through this. It kind of reminds me of my hubby before we found out about us both having hep b,,,he drank way too much. Im not sure this will work with your brother,but for me,,I told hubby I loved him,but if he didnt want to help himself,I was NOT going to watch him die without a fight,,either stop drinking and fight this illness or go sleep on a park bench,,,,he chose to fight,,,one of the hardest things Ive ever had to say to someone but sometimes tough love is what it takes. Good luck hon
trish

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/19/2006 12:36 AM (GMT -7)   
Hi Trish, I salute you girl! Tough love very often is the only alternative. Glad in your case it was successfull. Take care sweetie. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 3/19/2006 8:03 PM (GMT -7)   
Welcome Sister2,
 
My heart and prayers go out to you dear! You are in a good forum with lots of great
people.
 
I will pray for you and your brother daily!
 
Hugs with Love,
 
donajean

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/19/2006 8:24 PM (GMT -7)   
I have a question,does anyone else with cirrosis have an extreme amount of belching? I mean,like from down deep,,,,hubby is on protonics for it but it doesnt relieve the symtoms completely. Im not sure whether to contribute this to his diseased liver or maybe he has another problem that is causing it. thanks
trish

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 3/19/2006 8:38 PM (GMT -7)   

Hi Trish,

My husband gets that when he eats fatty foods. Intolerance to fatty foods might cause it. My husband also has gallbladder trouble. So you might do a search on that. Be sure to ask you Doctor.

Very glad to meet you and good to chat with you.

Hugs with Love....I will pray for you and your husband daily...

 

donajean :) :-)

 

 

 

 

 

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