Aa
My dad's cirrhosis story..
So, my dad has been a heavy drinking since I was child...pretty much beer, and beer at the time...it never got in the way of "normal life" (legally, ability to work, care for his family), but alcohol has definitely been a main stay in his life for over 50 years...he will be 70 years old soon...anyhow, I noticed roughly 2-3 years ago, his drinking increased, and I became concerned, but sort of took the attitude of it's his life, and provided it (drinking) didn't alter his life negatively (outside of health) it wasn't my place to make lifestyle judgments...also, my dad lives about a roughly 5 hour drive from my home, so trying to insist he change his habits was futile in my opinion...again, his habits have been consistent for many, many years...you get the drift...
Well, about a years ago I visited my father, and he did not look like his normal self...a bit pale, and he had lost some weight...then, suddenly he had to go to the hospital because he started to vomit blood...and then his liver disease began in full force...he immediately starting to swelling in his stomach too (ascites) and over the course of the next few months he was in and out of the hospital dealing with variceal bleeding and extreme ascites...the good news, is that he immediate stopped drinking, and this has not been an issue since his diagnosis...
Over the course of the last years, my dad has been in and out of the hospital at least a dozen times...by late last fall they had corrected the bleeding with surgery, and performed the "TIPPS" procedure to prevent extreme swelling...both have appeared to have worked nicely...
However, my dad has not been a model patient...without getting into too much detail, my father is a "go getter" type of person, who loves to work and be outside of the house...in other words being a sick person just doesn't go with his personality...which I am sure is the case with many people...
This being said, he did not diligently follow the program when it came to medicines...particularly lactulose, which he hated...overall, he was taking about 12 - 15 different medicines and vitamins daily...and unfortunately, he would skipped days, and just not take the medicine all together...and predictably, a few days without medicine resulted in confusing, loss of memory and so forth...he would then have to be taken to the hospital to be stabilized...once stabilized we would take him back home, and I would give him a good lecture about the need to follow the medical program...this would maybe last 5 days to a week, and next think you know he would refuse his medicine at home, and this process would start all over again until he was back a the hospital...it was frustrating to everyone as you could imagine..this process went on for almost 6 months...
Eventually, his medical providers (he receives care at the VA Hospital by the way..and they have provided excellent care) sat us down, and said if my father does not want to participate in his care, that this is fine, but he needed to be in an environment in which he could receive care which could not be provided at home...basically, when he wasn't taking his medicine, he was too much for his care giver to handle...the liver specialist told me that unfortunately "non compliance" is an issue with many people who suffer from this disease...no question, my dad was depressed...this has been a very hard year...
So for the past almost two months, my father has been in a nursing/hospice facility...he arrived at the end of March...once he entered (again, only taking pain medicine at this point) his condition almost immediately became to the point of no return (death), he went from be able to speak/finish sentences, to completely catatonic in about 10 days time...his hospice Dr. did not think he had much time left...
But, once he hit a low (first week in April) he has stabilized...yes, he can barely communicate, his skin in jaundice, and large blood spots/bruises have formed on his hands legs and body.. and I noticed (yesterday) pronounced swelling in his hands..and of course he has loss a lot of weight, and is very gaunt (weights maybe 130, nor normal weight is about 180) still, he still eats fairly well (if fed), but most of the time he sits in his wheelchair with his head down sleeping, and complains of general pain, which he is then administered morphine...which of course makes him sleep..
I guess my question is this: given his condition (I would estimate stage 3 liver failure), what can I expect? Given how quickly he deteriorated when first admitted to the nursing home, I am actually pretty shocked he has held on so long...his hospice Dr. told me that this is the nature of the disease, and that patients can stabilize to a degree, seem OK, and then on a moments notice fall into coma...it's just highly unpredictable...
Given my dad's personality, and past conversations, I know this is the last thing he wanted for himself...he hated the thought of being in such a condition, but obviously his lifestyle choices were not the best...at this point, I want him to be at peace, and having to see him this way is very difficult..
Not sure what info anyone might be able to provide, but if you have any thoughts or personal experiences to share, it would be greatly appreciated...
Well, about a years ago I visited my father, and he did not look like his normal self...a bit pale, and he had lost some weight...then, suddenly he had to go to the hospital because he started to vomit blood...and then his liver disease began in full force...he immediately starting to swelling in his stomach too (ascites) and over the course of the next few months he was in and out of the hospital dealing with variceal bleeding and extreme ascites...the good news, is that he immediate stopped drinking, and this has not been an issue since his diagnosis...
Over the course of the last years, my dad has been in and out of the hospital at least a dozen times...by late last fall they had corrected the bleeding with surgery, and performed the "TIPPS" procedure to prevent extreme swelling...both have appeared to have worked nicely...
However, my dad has not been a model patient...without getting into too much detail, my father is a "go getter" type of person, who loves to work and be outside of the house...in other words being a sick person just doesn't go with his personality...which I am sure is the case with many people...
This being said, he did not diligently follow the program when it came to medicines...particularly lactulose, which he hated...overall, he was taking about 12 - 15 different medicines and vitamins daily...and unfortunately, he would skipped days, and just not take the medicine all together...and predictably, a few days without medicine resulted in confusing, loss of memory and so forth...he would then have to be taken to the hospital to be stabilized...once stabilized we would take him back home, and I would give him a good lecture about the need to follow the medical program...this would maybe last 5 days to a week, and next think you know he would refuse his medicine at home, and this process would start all over again until he was back a the hospital...it was frustrating to everyone as you could imagine..this process went on for almost 6 months...
Eventually, his medical providers (he receives care at the VA Hospital by the way..and they have provided excellent care) sat us down, and said if my father does not want to participate in his care, that this is fine, but he needed to be in an environment in which he could receive care which could not be provided at home...basically, when he wasn't taking his medicine, he was too much for his care giver to handle...the liver specialist told me that unfortunately "non compliance" is an issue with many people who suffer from this disease...no question, my dad was depressed...this has been a very hard year...
So for the past almost two months, my father has been in a nursing/hospice facility...he arrived at the end of March...once he entered (again, only taking pain medicine at this point) his condition almost immediately became to the point of no return (death), he went from be able to speak/finish sentences, to completely catatonic in about 10 days time...his hospice Dr. did not think he had much time left...
But, once he hit a low (first week in April) he has stabilized...yes, he can barely communicate, his skin in jaundice, and large blood spots/bruises have formed on his hands legs and body.. and I noticed (yesterday) pronounced swelling in his hands..and of course he has loss a lot of weight, and is very gaunt (weights maybe 130, nor normal weight is about 180) still, he still eats fairly well (if fed), but most of the time he sits in his wheelchair with his head down sleeping, and complains of general pain, which he is then administered morphine...which of course makes him sleep..
I guess my question is this: given his condition (I would estimate stage 3 liver failure), what can I expect? Given how quickly he deteriorated when first admitted to the nursing home, I am actually pretty shocked he has held on so long...his hospice Dr. told me that this is the nature of the disease, and that patients can stabilize to a degree, seem OK, and then on a moments notice fall into coma...it's just highly unpredictable...
Given my dad's personality, and past conversations, I know this is the last thing he wanted for himself...he hated the thought of being in such a condition, but obviously his lifestyle choices were not the best...at this point, I want him to be at peace, and having to see him this way is very difficult..
Not sure what info anyone might be able to provide, but if you have any thoughts or personal experiences to share, it would be greatly appreciated...
Unfortunatley, he has not been compliant with his medicine, taking it for a while, and then stopping...also, there's no way in **** I am getting him into alcohol counseling...his brain is just not wired that way...
Thanks Hector...the good thing is that my dad stopped drinking over a year ago, and never drank a drop of alcohol since his diagnosis last May...the problem though, is that the damage has already been done...
1 Comments
If your father has been able to stop drinking for a year now he should be evaluated at a liver transplant center to see if he would be eligible to be "listed" to receive a deceased-donor liver.
If like you said his liver disease has progressed "too-far" a liver transplant is the only option remaining for those people.
Most transplant center require at less 6 months of sobriety to be eligible for transplantation.
Has your father been evaluated for liver transplant?
Does he have other conditions that prevent him from getting a transplant?
Perhaps he is too old? >70
Take care.
Hector
If like you said his liver disease has progressed "too-far" a liver transplant is the only option remaining for those people.
Most transplant center require at less 6 months of sobriety to be eligible for transplantation.
Has your father been evaluated for liver transplant?
Does he have other conditions that prevent him from getting a transplant?
Perhaps he is too old? >70
Take care.
Hector
COMMUNITY LEADER
I guess my question is this: given his condition what can I expect?
As you said alcoholism has been your father's lifestyle for many, many decades and unfortunately he appears not to know of any other way to live despite having developed cirrhosis of the liver and its complications. Cirrhosis (with ascites and peripheral edema, hepatic encephalopathy, jaundice, is stage 4 liver disease, the last stage of liver disease and like all of the doctors that you have talked to you say... without a change on his part and compete abstinence of his part alcohol will in time will be fatal.
This is why you father is in nursing/hospice facility.
For those who are compliant and eligible for a liver transplant they get referred to a liver transplant center where they are "listed" and where the doctors there help them manage their liver disease until they can get a new liver.
I am very sorry to hear about your father's situation and wish the best to him and your family.
Hector
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