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Extent of Liver disease and possibility of transplant
My father was admitted to the VA for alcoholic liver disease, after 1 month in the hospital the doctors said there wasn't anything else they could do for him (they gave him less then 4 months to live) so we moved him to a nursing home closer to me under hospice care (that was 1 1/2 years ago). He has not gotten out of bed during that entire time. He goes thru cycles of stability but his ammonia levels are high (124) even with lactolose, his albumin levels are low and he is on morphine every 6-8 hours. He has mild encephalopathy and ascites. My question is, is he a canidate for a liver transplant? Would he even survive the surgery? The doctors at the nursing home are not very helpful and I don't know where to go to have my questions answered. Thank you
Just found this site today and posted a message farther up the page under "My ten year old son" by Tammy on 2/28/2000. I left a lot of information that may help many of you who stop here at this question & answer. God Bless You All, Whatever You Conceive God To Be - Karen P.S. To find a particular specialist in your area find the nearest big city with a teaching hospital or big hospital and call and ask for the department that handles your problem. They should be able to guide you from there. =:)
Where do we go to find out how they determine who gets a liver transplant? Do we just have to ask different doctors or is there a standard?
My father 76, has cirrohsis, varices, encephalopathy 1 or 2 times in a week, currently being treated at the Va Hospital in Puerto Rico, though strong in heart everyday is becoming more adhered to his bed, walks by himself eats everything given to him, especially sweets, he's a diabetic recently discoved a year ago when he went into shock, VA never told us anything about his sugar levels...is this possible? A sudden diabetic?Please, I'm in need of low-protein diets, some say this helps the encephalopathy episodes.Thanks
PLEASE READ A BREIF STORY RELATING TO TRANSPLANTS FOR PEOPLE WHO QHAVE CIRRHOSIS DUE TO ALCOHOL IT IS IN THE SECTION Q EXTENT OF
LIVER DISEASE AND POSSIBILITY OF TRANSPLANT UNDER COMENT DAWN ST CLARE 9 APRIL 2000
LIVER DISEASE AND POSSIBILITY OF TRANSPLANT UNDER COMENT DAWN ST CLARE 9 APRIL 2000
November 99 my Mother died from HEPATIC FAILURE HEPATIC CIRRHOSIS
She was 49 and it has completly changed my life my goles are
differnt.I am spending all my time searching for answers.
My Mother drank alcohol for some years but was not as some people
would imagine a fall down drunk.
My Mother ran a succesful youth club and held the posion of
community worker she helped many people in her life and never
discriminated anyone,she brought up me and my brother and sister
single handedly plus many foster chidren.
My most importent question is WHY when she needed help was she
discriminated against.
Is it not true that we all disearve a second chance at life if
we let this happen where will it take us ,limited treatment for
smokers,overeaters, It seems to me that if a DR does not like
your choice of life style you will be refused life saving operations.
My mother needed aliver transplant and was told this on many
stays at the hospitil,over 5 year period my mother was admited
many many times with liver failure sometimes alcohol related
but mostly not she stoped drinking many times in the hope of a
transplant but time passed and she became very depressd,she tried to take her own life because she felt a burden to me.This was not true .
I am going to try and sue the hospital for medical negligence
three days before my mother died I was told she was not an intensive care candidate ,WHY in five years of being admited to hospitol at deaths door being told she wont make it threw the night was she not a candidate for ICU.
This is discrimination of the highist order my mother died from it she was a great woman with time and compasion for anyone
its ironic that she should die from something that she strongly
fought against.
I sat with my sister and our husbands and watched my mother fight for her life she tried so very hard to stay with us
but she was fighting this alone the medical staff had given up
on her my beautiful mother because she was a alcoholic
Do you think i have a case ????
my TV EMAIL AD IS ***@**** if you have trouble my telephone no is 01612927225 uk
She was 49 and it has completly changed my life my goles are
differnt.I am spending all my time searching for answers.
My Mother drank alcohol for some years but was not as some people
would imagine a fall down drunk.
My Mother ran a succesful youth club and held the posion of
community worker she helped many people in her life and never
discriminated anyone,she brought up me and my brother and sister
single handedly plus many foster chidren.
My most importent question is WHY when she needed help was she
discriminated against.
Is it not true that we all disearve a second chance at life if
we let this happen where will it take us ,limited treatment for
smokers,overeaters, It seems to me that if a DR does not like
your choice of life style you will be refused life saving operations.
My mother needed aliver transplant and was told this on many
stays at the hospitil,over 5 year period my mother was admited
many many times with liver failure sometimes alcohol related
but mostly not she stoped drinking many times in the hope of a
transplant but time passed and she became very depressd,she tried to take her own life because she felt a burden to me.This was not true .
I am going to try and sue the hospital for medical negligence
three days before my mother died I was told she was not an intensive care candidate ,WHY in five years of being admited to hospitol at deaths door being told she wont make it threw the night was she not a candidate for ICU.
This is discrimination of the highist order my mother died from it she was a great woman with time and compasion for anyone
its ironic that she should die from something that she strongly
fought against.
I sat with my sister and our husbands and watched my mother fight for her life she tried so very hard to stay with us
but she was fighting this alone the medical staff had given up
on her my beautiful mother because she was a alcoholic
Do you think i have a case ????
my TV EMAIL AD IS ***@**** if you have trouble my telephone no is 01612927225 uk
November 99 my Mother died from HEPATIC FAILURE HEPATIC CIRRHOSIS
She was 49 and it has completly changed my life my goles are
differnt.I am spending all my time searching for answers.
My Mother drank alcohol for some years but was not as some people
would imagine a fall down drunk.
My Mother ran a succesful youth club and held the posion of
community worker she helped many people in her life and never
discriminated anyone,she brought up me and my brother and sister
single handedly plus many foster chidren.
My most importent question is WHY when she needed help was she
discriminated against.
Is it not true that we all disearve a second chance at life if
we let this happen where will it take us ,limited treatment for
smokers,overeaters, It seems to me that if a DR does not like
your choice of life style you will be refused life saving operations.
My mother needed aliver transplant and was told this on many
stays at the hospitil,over 5 year period my mother was admited
many many times with liver failure sometimes alcohol related
but mostly not she stoped drinking many times in the hope of a
transplant but time passed and she became very depressd,she tried to take her own life because she felt a burden to me.This was not true .
I am going to try and sue the hospital for medical negligence
three days before my mother died I was told she was not an intensive care candidate ,WHY in five years of being admited to hospitol at deaths door being told she wont make it threw the night was she not a candidate for ICU.
This is discrimination of the highist order my mother died from it she was a great woman with time and compasion for anyone
its ironic that she should die from something that she strongly
fought against.
I sat with my sister and our husbands and watched my mother fight for her life she tried so very hard to stay with us
but she was fighting this alone the medical staff had given up
on her my beautiful mother because she was a alcoholic
Do you think i have a case ????
my TV EMAIL AD IS ***@**** if you have trouble my telephone no is 01612927225 uk
She was 49 and it has completly changed my life my goles are
differnt.I am spending all my time searching for answers.
My Mother drank alcohol for some years but was not as some people
would imagine a fall down drunk.
My Mother ran a succesful youth club and held the posion of
community worker she helped many people in her life and never
discriminated anyone,she brought up me and my brother and sister
single handedly plus many foster chidren.
My most importent question is WHY when she needed help was she
discriminated against.
Is it not true that we all disearve a second chance at life if
we let this happen where will it take us ,limited treatment for
smokers,overeaters, It seems to me that if a DR does not like
your choice of life style you will be refused life saving operations.
My mother needed aliver transplant and was told this on many
stays at the hospitil,over 5 year period my mother was admited
many many times with liver failure sometimes alcohol related
but mostly not she stoped drinking many times in the hope of a
transplant but time passed and she became very depressd,she tried to take her own life because she felt a burden to me.This was not true .
I am going to try and sue the hospital for medical negligence
three days before my mother died I was told she was not an intensive care candidate ,WHY in five years of being admited to hospitol at deaths door being told she wont make it threw the night was she not a candidate for ICU.
This is discrimination of the highist order my mother died from it she was a great woman with time and compasion for anyone
its ironic that she should die from something that she strongly
fought against.
I sat with my sister and our husbands and watched my mother fight for her life she tried so very hard to stay with us
but she was fighting this alone the medical staff had given up
on her my beautiful mother because she was a alcoholic
Do you think i have a case ????
my TV EMAIL AD IS ***@**** if you have trouble my telephone no is 01612927225 uk
22 years ago I was diagnosed with AIH which developed into cirrhosis. After years of treatment and a successful surgery to stop internal bleeding from esophaegeal varices, I am maintaining nicely on diuretics. However, two years ago I was diagnosed with CREST Syndrome then told to "come back when you have symptoms". The physician appeared to know very little about the disease (which I had never heard of) and I haven't returned to him. Over the last several months, I have had a worsening problem with numbness in the hands and arms in the morning (to the point where there is absolutely no feeling up to my elbows). Is this a symptom? How can I find a physician in Florida who has extensive experience with CREST Syndrome/cirrhosis patients? My concern is that a lack of treatment for the CREST at the early stages will make it that much harder to treat later on.
Can you help? Thanks so much.
Katherine
Can you help? Thanks so much.
Katherine
My mom has a case of polysystic disease of the kidney and liver. After many years of suffering and strict diet her kidney finally failed. She had been to the hospital (and still is for the past 2 months!) to have her gallbladder removed. She is also now on dialysis 3x/wk. Ironically, her kidneys are now fine (for the meantime, anyway); but her liver has been diagnosed as "seriously bad." Cysts are abound both inside and outside of the liver. Additionally, she has cirrhosis of the liver and also have been told she has HEP-C. When her enzymes are high, she experiences uncomfortable itchiness and she is very uneasy.
A few days ago she had become unconscious for 3 days. She had to be tube fed and given lactulose to help remove the ammonia/toxins. Her neurologist had given her medication to help stop/prevent seizures. After then did she become conscious again. Although she was suffering from memory loss and slight speech impediment, we were happy she was talking at all. Needless to say it gave us quite a scare. The neurologist decided to lower the dosage to see if she stabilized at all. She became unconscious all over again. I don't know what to expect one day to the next and is causing my father heartache. I asked her hematologist/neurologist/gastrointerologist, etc. if we should look into liver transplant and was told that it is a very dangerous procedure and she may not even survive. These drs. are very frustrating because they do not offer any options for us. And I am just not sure what questions to ask anymore.
My mom is too young at 64 to die. She has never touched alcohol or cigarettes. She had also watched her diet closely - which probably helped her survived this long.
HELP!!!
***@****
A few days ago she had become unconscious for 3 days. She had to be tube fed and given lactulose to help remove the ammonia/toxins. Her neurologist had given her medication to help stop/prevent seizures. After then did she become conscious again. Although she was suffering from memory loss and slight speech impediment, we were happy she was talking at all. Needless to say it gave us quite a scare. The neurologist decided to lower the dosage to see if she stabilized at all. She became unconscious all over again. I don't know what to expect one day to the next and is causing my father heartache. I asked her hematologist/neurologist/gastrointerologist, etc. if we should look into liver transplant and was told that it is a very dangerous procedure and she may not even survive. These drs. are very frustrating because they do not offer any options for us. And I am just not sure what questions to ask anymore.
My mom is too young at 64 to die. She has never touched alcohol or cigarettes. She had also watched her diet closely - which probably helped her survived this long.
HELP!!!
***@****
This message is a response to Lisa Baird posted on Jan 8,2000
My 17 yr old son has been diagnoised with psc and is in the process of being put on the list. Another non alcohol related.
Although he has progressed with the disease rather rapidly the doctors has not really told us much about symthoms to watch for. Could you help me with this. Since it sounds like you have been through the whole thing could you tell me more about it as far as what we can look for. Have you found any support groups in the past years. I guess we are looking for people in the same situation so we can learn by others. I was told confusion and mixing up days and nights was symthoms. It is kind of bothering me because he has not been sleeping good at all. Does any of this sound familiar to you? thanks
My 17 yr old son has been diagnoised with psc and is in the process of being put on the list. Another non alcohol related.
Although he has progressed with the disease rather rapidly the doctors has not really told us much about symthoms to watch for. Could you help me with this. Since it sounds like you have been through the whole thing could you tell me more about it as far as what we can look for. Have you found any support groups in the past years. I guess we are looking for people in the same situation so we can learn by others. I was told confusion and mixing up days and nights was symthoms. It is kind of bothering me because he has not been sleeping good at all. Does any of this sound familiar to you? thanks
My heart went out to many tonight that I had read for the first time on this site, I have never been here before.
First and formost, I think it was "V" 11/3/99 whos father was in the VA hospitol for a liver transplant, my fathers (spiritual birthday is tomorrow 6yrs), a Vet also 52 yrs of service,68 yrs young when he died.
The VA hospitol and many others told him at one time he had 6 months to live,after <he> walked out of the hospitol and would not allow for any self pitty, he went around the world 4 times, before he died where he wanted in Hawaii, that "6 months" lasted 19 years. So I disagree with alot of what I see, and sympathize with those who don't know, as this is all a learning lesson. My heart goes out to those, but I still need to say, if you truely love the person while they are sick, help them live out the rest of "their" life's, as you may never know, while you werethinking 6 months, what would happen if you were given 10 years.....and I know the VA hospitols are the best for "our Guys", but just maybe our guys want to prove them wrong, Love, pray, and give all the support, God comes home forhis children when he wants them, no need to put them there before he wants them.
Blessing to all,
Kathy: ***@****
First and formost, I think it was "V" 11/3/99 whos father was in the VA hospitol for a liver transplant, my fathers (spiritual birthday is tomorrow 6yrs), a Vet also 52 yrs of service,68 yrs young when he died.
The VA hospitol and many others told him at one time he had 6 months to live,after <he> walked out of the hospitol and would not allow for any self pitty, he went around the world 4 times, before he died where he wanted in Hawaii, that "6 months" lasted 19 years. So I disagree with alot of what I see, and sympathize with those who don't know, as this is all a learning lesson. My heart goes out to those, but I still need to say, if you truely love the person while they are sick, help them live out the rest of "their" life's, as you may never know, while you werethinking 6 months, what would happen if you were given 10 years.....and I know the VA hospitols are the best for "our Guys", but just maybe our guys want to prove them wrong, Love, pray, and give all the support, God comes home forhis children when he wants them, no need to put them there before he wants them.
Blessing to all,
Kathy: ***@****
My husband and I are in the process of divorce over his alcohol
addiction. As a closet drinker we never knew exactly how much
he was consuming each day, but later determined from credit card statements that it was a nearly a fifth a day.
About two years ago I had him go in for a physical and clued the doctor in about his addiction before the physical was done. The doctor told him after running some blood tests that on a scale of 1 10 he had lost 3 points of liver function.
Since he left 60 days ago he has lost about 35 pounds. (60 pounds in the last 9 months) He eats nothing when we see him now. We haven't even seen him drink a glass of water. When he visits the kids he makes an average of 2 bathroom visits each hour. His weight loss is primarily seen in his arms and legs.
His skin tone is gray. He had the dt's at one point when I saw him. He has complained for years occasionally about his stomach being "sore" to the touch. I think he is truly trying to quit. He may still have something to drink, but I think it is far less then he used to. Why would abstaining or reducing alcohol intake bring on this condition? Does stress bring out a condition like this?
Is this hepatitis? Is it cirrohsis? Can you have a bout like this and recover? What is the risk if it remains untreated?
addiction. As a closet drinker we never knew exactly how much
he was consuming each day, but later determined from credit card statements that it was a nearly a fifth a day.
About two years ago I had him go in for a physical and clued the doctor in about his addiction before the physical was done. The doctor told him after running some blood tests that on a scale of 1 10 he had lost 3 points of liver function.
Since he left 60 days ago he has lost about 35 pounds. (60 pounds in the last 9 months) He eats nothing when we see him now. We haven't even seen him drink a glass of water. When he visits the kids he makes an average of 2 bathroom visits each hour. His weight loss is primarily seen in his arms and legs.
His skin tone is gray. He had the dt's at one point when I saw him. He has complained for years occasionally about his stomach being "sore" to the touch. I think he is truly trying to quit. He may still have something to drink, but I think it is far less then he used to. Why would abstaining or reducing alcohol intake bring on this condition? Does stress bring out a condition like this?
Is this hepatitis? Is it cirrohsis? Can you have a bout like this and recover? What is the risk if it remains untreated?
I am 29 years old, I've known about my liver condition since age 21 and had a liver transplant 6 months ago The doctors were very concerned that my drinking was a factor in not giving me a new liver.. I didn't think I drank more that the "average" University student but they wanted me to admit that I had a "problem" and that I had stopped drinking. I did just that and waited 1 1/2 years for my transplant.. I think now that this was a scare tactic to make me adhere to getting myself better. My liver disease was NOT alcohol related(much to their surprise). I suggest fighting as hard as you can to make them see that the alcohol is not an issue anymore.
I just want to comment on being rejected for organ transplantation. I needed a new organ 14 years ago. I'm from western New York. One hospital in Rochester said 'they' wouldn't give me one because I had virul hepatitis and it would only come back and the transplant would be a waist on me. Strong Memorial, however, felt otherwise. I was sent to Pittsburg and I was transplanted within 2 weeks. If you're turned down. Find another doctor. It's that simple.
I receieved a liver transplant 5/14/98. The scenario began with an appointment with a gastroenterologist at the H.F. Med Cen in W. Bloomfield. He suggested that I see a hepatologist at the main campus (HFH). Although he didn't say anything about the condition of my liver I was told that I definitely needed a new liver at the hospital. As time went on I continued to get worse. The encepholapathy became outrageous. At one point I forgot how to walk or talk. My condition was brought on by alcoholism and hep-C. Although I haven't had a drink in over five years I know what would happen if I were to take just one sip of alcohol. I'd be right back where I started. I guess that being put on the transplant list or being rejected has to do with need. Not economically, but physically. I guess for me it became a question of life or death. It was devastating to me and yet I am very grateful. I guess one must truly hit bottom to realize the extent of his or her illness. I wish all those who are facing a transplant or those being affected by someone else's need the best of luck and all my prayers.
There is a new drug that has cured cirrhosis in rats, it is called Hepatocyte growth factor. They have not tested it on humans that I know of, you know the FDA the speed they work at but maybe you can find additional information on it. If you do please let me know by reposting here to the name of Don D
Goodluck and I will say a prayer
Goodluck and I will say a prayer
Does anyone have an idea on how to find a "real" hepatologist in the Denver Boulder area? I have just read Dr. Melissa Palmers new book and realize now that all of my symptoms were ignored put together it all makes sense. Please email me at ***@**** if you have any idea. Thanks
Dear V,
A number of factors determine whether an individual is a suitable candidate for a liver transplantation. Age is one factor. A second consideration is physical performance. An individual who is bedridden would probably not have the stamina to survive the stress of this major surgery. Cincurrent conditions e.g. heart or lung disease may disqualify a candidate. Finally, if the individual is still abusing alcohol or drugs, then they would not be a liver transplant candidate.
A number of factors determine whether an individual is a suitable candidate for a liver transplantation. Age is one factor. A second consideration is physical performance. An individual who is bedridden would probably not have the stamina to survive the stress of this major surgery. Cincurrent conditions e.g. heart or lung disease may disqualify a candidate. Finally, if the individual is still abusing alcohol or drugs, then they would not be a liver transplant candidate.
My ex-husband is an alcoholic and began drinking again heavily over a year ago after six years of sobriety. He experiences frequent stomach pain, diarrhea, occasional vomiting, and his stomach is very swollen. About a month ago, I convinced him to see a doctor and his liver enzymes were "moderately" elevated. He was advised to stop drinking immediately but has continued to drink every day and his tolerance is very high. Nothing seems to matter more than the alcohol, he has lost his job, our marriage, and now it is affecting his health. At what point does this the damage from alcohol abuse lead to cirrhosis?
V. I really wish I knew how to help you. Why hasn't your father been out of bed in 1.5 years? And why the morphine? When was the last time he was seen by a hepatologist? There are medications now for encephalopathy; is he on those? It is not unusual at all for people with cirrhosis secondary to alcohol to totally halt the disease after they stop drinking. In some cases, they can become stable for as long as 10 years; however, the disease is slowly progressing and it eventually will be the cause of death.
Anne,
As I said, I am on a liver transplant list. MY LIVER FUNCTION TESTS ARE NORMAL !!!! The symptoms you described are those that I had when I was in a decompensating crisis (the swollen abdomen is called ascites and is abdominal fluid from portal hypertension). The only way to determine the degree of damage to the liver is by biopsy; the LFTs may or may not reflect damage. Given the symptoms your husband has, I would try to get him to see a hepatologist.
Anne,
As I said, I am on a liver transplant list. MY LIVER FUNCTION TESTS ARE NORMAL !!!! The symptoms you described are those that I had when I was in a decompensating crisis (the swollen abdomen is called ascites and is abdominal fluid from portal hypertension). The only way to determine the degree of damage to the liver is by biopsy; the LFTs may or may not reflect damage. Given the symptoms your husband has, I would try to get him to see a hepatologist.
My Dad is 64 years old. Before he entered the hospital/nursing home, he had been drinking for 45 years (hard alcohol). I just don't know where to turn for answers.
I am currently on a liver transplant list. My cirrhosis is a direct result of alcohol abuse over a 20-25 year period.
While I do not know exactly how transplant candidates are chosen (or rejected), I can say the following about my case:
1. I am relatively young. (early 50s)
2. No findings of carcinoma or any other major illness/disease.
3. Currently going on 3 years of sobriety and have undergone a variety of dependency/alcohol abuse programs.
4. Been 100 percent compliant with all medications, diets, appointments, etc. Anything they say - I do.
Apparently, each transplant center has their own criteria for being placed on their list. Also, each center varies in wait time. At mine, 2-year wait time is not unusual. If you're being told your father is not a candidate, I would ask for specifics. Perhaps they do not feel he could survive the operation.
I hope that information helps a bit.
While I do not know exactly how transplant candidates are chosen (or rejected), I can say the following about my case:
1. I am relatively young. (early 50s)
2. No findings of carcinoma or any other major illness/disease.
3. Currently going on 3 years of sobriety and have undergone a variety of dependency/alcohol abuse programs.
4. Been 100 percent compliant with all medications, diets, appointments, etc. Anything they say - I do.
Apparently, each transplant center has their own criteria for being placed on their list. Also, each center varies in wait time. At mine, 2-year wait time is not unusual. If you're being told your father is not a candidate, I would ask for specifics. Perhaps they do not feel he could survive the operation.
I hope that information helps a bit.
My 35 year old brother received the same news today from his doctor. He has the same symptoms and was told there was nothing more they can do. They also said he is not a candidate for a transplant since he is an alcoholic. His liver is not functioning at all. How long can you live with a non-functioning liver? I feel helpless.
Just to follow up, the doctors at the VA gave him 4 months to live (that was back in June 1998), he is still hanging on today (though in a nursing home). I also want to know how long someone can be this way? As far as being a canidate for a liver transplant, is he still considered an "alcoholic" if he has been without a drink for 11/2 years (though not by his choice, rather a forced sobriety for medical reasons, like being in the hospital or nursing home)?
I hope the doc will answer these questions. Why
are mso many people turned down for liver transplants?
Who is receiving the transplants? It is to my under-
standing that a good percentage of liver tranplants go
to people with liver disease from alcoholism and Hep-c
Do we give up on these people? Or do we give them a
second chance to get clean and sober? Is someone turned
down because he is an alcoholic or is he told that if you
straighten out we will put you on the list. To V
and Denise, go to UNOS on your internet and to the
related transplant links, they will tell you who to
contact for your dad and brother, You have to fight
for them so what that they are sober because they are
in the hospital, they still are sober, fight for them!
are mso many people turned down for liver transplants?
Who is receiving the transplants? It is to my under-
standing that a good percentage of liver tranplants go
to people with liver disease from alcoholism and Hep-c
Do we give up on these people? Or do we give them a
second chance to get clean and sober? Is someone turned
down because he is an alcoholic or is he told that if you
straighten out we will put you on the list. To V
and Denise, go to UNOS on your internet and to the
related transplant links, they will tell you who to
contact for your dad and brother, You have to fight
for them so what that they are sober because they are
in the hospital, they still are sober, fight for them!
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