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Need help understanding stage of cirrhosis
My mother has been diagnosed with non-alcoholic cirrhosis. She is presently in the hospital with spontaneous bacterial peritonitis. She also has been severe ascites and edema in both legs. She continuous for the past year is losing blood and requires bimonthly transfusions. She also has portal hypertension.
They drained 3 liters of fluid from her abdomen two days ago and she is starting to swell again. She is in ICU and is suffering from hallucinations and is very disoriented. She is 72 years old.
My question - judging from these symptoms alone, what stage liver disease would you guess her to be in and what would her prognosis be?
The doctors are very hesitant to predict anything and very difficult get a straight answer from.
They drained 3 liters of fluid from her abdomen two days ago and she is starting to swell again. She is in ICU and is suffering from hallucinations and is very disoriented. She is 72 years old.
My question - judging from these symptoms alone, what stage liver disease would you guess her to be in and what would her prognosis be?
The doctors are very hesitant to predict anything and very difficult get a straight answer from.
I am sorry about your mom passing, It is a difficult time, and sometimes it gets hard to remember that she isn't suffering anymore.
Her symptoms and story are similar to my to my own, and the frustrating part is not being able to get answers. Thank goodness for this web site.
Her symptoms and story are similar to my to my own, and the frustrating part is not being able to get answers. Thank goodness for this web site.
COMMUNITY LEADER
Susan you sound like you are a wonderful daughter and I am very sorry to hear about your mom. It is so nice that you all were right there by her side. I can’t think of a better way. You sure have been a big help to your family through this, remember to take good care of you now.
God bless you all,
Randy
God bless you all,
Randy
Susan,
I was so very saddened to read your post. Your Mom is no longer suffering from this terrible disease. I am sure your Mom knew you were doing everything you could to help her. She was loved and she knew it. That's a wonderful gift you gave her in the end.
Take care of yourself and your family and know that she is at peace.
You have my deepest sympathy.
Nan
I was so very saddened to read your post. Your Mom is no longer suffering from this terrible disease. I am sure your Mom knew you were doing everything you could to help her. She was loved and she knew it. That's a wonderful gift you gave her in the end.
Take care of yourself and your family and know that she is at peace.
You have my deepest sympathy.
Nan
Susan,
We are so sorry for your family's loss. Although it's sad to lose a loved one, I hope that you find comfort in knowing that her passing was peaceful and she's no longer suffering.
She clearly had End Stage Liver Disease, and it was the complications of ESLD that brought her to ICU, and the complications of ESLD that caused her kidneys and her liver to fail. I am sorry that your family had to go through the experience of doctors and care professionals being evasive and not being able to manage her infection more quickly in order to stabilize her. I know it's hard to hear, but even if they had managed to treat her infection more effectively and stabilize her, the likelihood is that she would have had other life threatening complications, if not now, again in the near future.
Prayers for you and your family.
Advocate1955
We are so sorry for your family's loss. Although it's sad to lose a loved one, I hope that you find comfort in knowing that her passing was peaceful and she's no longer suffering.
She clearly had End Stage Liver Disease, and it was the complications of ESLD that brought her to ICU, and the complications of ESLD that caused her kidneys and her liver to fail. I am sorry that your family had to go through the experience of doctors and care professionals being evasive and not being able to manage her infection more quickly in order to stabilize her. I know it's hard to hear, but even if they had managed to treat her infection more effectively and stabilize her, the likelihood is that she would have had other life threatening complications, if not now, again in the near future.
Prayers for you and your family.
Advocate1955
Update on my Mom - My Mom passed away Thursday night after being told 1 week earlier by the ICU doctors in Birmingham AL that there "was no way she was in end stage". I want to thank all of you for your advice on my Mother. Thanks to you I was able to prepare my Dad since the doctors were being so evasive. I knew just from reading on here and the internet that my mother was end stage - I will never know why the doctors were not honest until I pushed my Dad to question them further with the info I gave him.
Anyway, her passing so so peaceful as her kidneys shut down and she simply went to sleep. She died as me, my Dad and my two daughters all gathered around and held her. I learned something so valuable from this experience - be an advocate for your loved one. Do your own homework. I wish I had educated myself earlier but I just assumed the doctors were on top of things - a transplant was NEVER suggested to her.
Once again, thanks for your support and advice.
Susan
Anyway, her passing so so peaceful as her kidneys shut down and she simply went to sleep. She died as me, my Dad and my two daughters all gathered around and held her. I learned something so valuable from this experience - be an advocate for your loved one. Do your own homework. I wish I had educated myself earlier but I just assumed the doctors were on top of things - a transplant was NEVER suggested to her.
Once again, thanks for your support and advice.
Susan
Sorry for the double post there. Medhelp seems to be having some glitches today.
VRE is a Vancomycin-resistant Enterococcus infection, a bacterial infection that is resistant to the antibiotic Vancomycin. This is a bacteria that is normally found in our intestines and/or urinary tract, but can sometimes over develop into an infection. This is probably due to your mom's weakened immune system at this time. Very likely, now that she has developed this infection, her doctors will change her antibiotics or add new antibiotics to treat this specific infection. She will probably remain in "isolation", if you will, until her infection has improved, for her own sake as well as for the sake of others.
Since VRE is, I believe, mainly spread by hand to hand contact, everyone in contact with your mom should be wearing a gown and gloves, surfaces should be cleaned often, and hand washing is essential. You and your dad are not likely to contract this infection because your immune systems are probably not compromised, but precautions should be taken (gloves, gown, handwashing, clean surfaces).
As far as the catheter goes, that is up to her doctor. If she needs the catheter, then she needs it. Obviously it's not ideal, as VRE can be present in the urinary tract as well, but if she isn't able to urinate, then she needs the catheter.
Although we're happy to support you and be your sounding board, only her medical care providers can answer these types of questions, since they are the ones who know the details of your mom's specific case. Write down your questions as you think of them, and then ask when the nurse or the doctor are in the room.
Advocate1955
VRE is a Vancomycin-resistant Enterococcus infection, a bacterial infection that is resistant to the antibiotic Vancomycin. This is a bacteria that is normally found in our intestines and/or urinary tract, but can sometimes over develop into an infection. This is probably due to your mom's weakened immune system at this time. Very likely, now that she has developed this infection, her doctors will change her antibiotics or add new antibiotics to treat this specific infection. She will probably remain in "isolation", if you will, until her infection has improved, for her own sake as well as for the sake of others.
Since VRE is, I believe, mainly spread by hand to hand contact, everyone in contact with your mom should be wearing a gown and gloves, surfaces should be cleaned often, and hand washing is essential. You and your dad are not likely to contract this infection because your immune systems are probably not compromised, but precautions should be taken (gloves, gown, handwashing, clean surfaces).
As far as the catheter goes, that is up to her doctor. If she needs the catheter, then she needs it. Obviously it's not ideal, as VRE can be present in the urinary tract as well, but if she isn't able to urinate, then she needs the catheter.
Although we're happy to support you and be your sounding board, only her medical care providers can answer these types of questions, since they are the ones who know the details of your mom's specific case. Write down your questions as you think of them, and then ask when the nurse or the doctor are in the room.
Advocate1955
I definitely think that as soon as your mom is stabilized from her currently life threatening complications, your father will need to pursue the possibility of a liver transplant with the transplant hepatologist. Although I think this is a necessary next step, as soon as she is more stabilized, I also don't want to get your hopes up too high. Being assessed for and approved for a liver transplant is a long and difficult process, as I'm sure Nan and Hector will attest to. There are many, many steps: lab work, imaging, all other medical screens need to be completed, all other medical conditions need to be treated and stabilized, dental work needs to be completed, the patient needs to have classes, the caretaker needs to have classes...it can take quite some time, as it's a very thorough and lengthy process...
I'm not trying to discourage your family from pursuing this course at all, I just want to help you prepare for the fact that being assessed and possibly approved for a transplant is a lengthy and difficult process.
Will your mom's past heart attack and/or her COPD disqualify her? I know that age and general health are both taken into consideration. There are not enough donated livers for the number of people that require liver transplants, and so transplant hepatology teams only approve patients who have a higher likelihood of surviving a liver transplant, which is a very risky surgery. Not only is the surgery risky, but the recovery period is very risky as well. Transplant centers have the goal of not only a successful transplant, but a successful recovery from transplant as well.
I'm surprised that your mom's medical care providers are not informing you and your dad of your mom's status as the hours and days go on. It sounds like both you and your dad (and other family members) really need to be your mom's advocates right now. Ask questions, take notes, ask for status updates, and, if necessary, ask for a family meeting with her care team.
I'm not trying to discourage your family from pursuing this course at all, I just want to help you prepare for the fact that being assessed and possibly approved for a transplant is a lengthy and difficult process.
Will your mom's past heart attack and/or her COPD disqualify her? I know that age and general health are both taken into consideration. There are not enough donated livers for the number of people that require liver transplants, and so transplant hepatology teams only approve patients who have a higher likelihood of surviving a liver transplant, which is a very risky surgery. Not only is the surgery risky, but the recovery period is very risky as well. Transplant centers have the goal of not only a successful transplant, but a successful recovery from transplant as well.
I'm surprised that your mom's medical care providers are not informing you and your dad of your mom's status as the hours and days go on. It sounds like both you and your dad (and other family members) really need to be your mom's advocates right now. Ask questions, take notes, ask for status updates, and, if necessary, ask for a family meeting with her care team.
I definitely think that as soon as your mom is stabilized from her currently life threatening complications, your father will need to pursue the possibility of a liver transplant with the transplant hepatologist. Although I think this is a necessary next step, as soon as she is more stabilized, I also don't want to get your hopes up too high. Being assessed for and approved for a liver transplant is a long and difficult process, as I'm sure Nan and Hector will attest to. There are many, many steps: lab work, imaging, all other medical screens need to be completed, all other medical conditions need to be treated and stabilized, dental work needs to be completed, the patient needs to have classes, the caretaker needs to have classes...it can take quite some time, as it's a very thorough and lengthy process...
I'm not trying to discourage your family from pursuing this course at all, I just want to help you prepare for the fact that being assessed and possibly approved for a transplant is a lengthy and difficult process.
Will your mom's past heart attack and/or her COPD disqualify her? I know that age and general health are both taken into consideration. There are not enough donated livers for the number of people that require liver transplants, and so transplant hepatology teams only approve patients who have a higher likelihood of surviving a liver transplant, which is a very risky surgery. Not only is the surgery risky, but the recovery period is very risky as well. Transplant centers have the goal of not only a successful transplant, but a successful recovery from transplant as well.
I'm surprised that your mom's medical care providers are not informing you and your dad of your mom's status as the hours and days go on. It sounds like both you and your dad (and other family members) really need to be your mom's advocates right now. Ask questions, take notes, ask for status updates, and, if necessary, ask for a family meeting with her care team.
I'm not trying to discourage your family from pursuing this course at all, I just want to help you prepare for the fact that being assessed and possibly approved for a transplant is a lengthy and difficult process.
Will your mom's past heart attack and/or her COPD disqualify her? I know that age and general health are both taken into consideration. There are not enough donated livers for the number of people that require liver transplants, and so transplant hepatology teams only approve patients who have a higher likelihood of surviving a liver transplant, which is a very risky surgery. Not only is the surgery risky, but the recovery period is very risky as well. Transplant centers have the goal of not only a successful transplant, but a successful recovery from transplant as well.
I'm surprised that your mom's medical care providers are not informing you and your dad of your mom's status as the hours and days go on. It sounds like both you and your dad (and other family members) really need to be your mom's advocates right now. Ask questions, take notes, ask for status updates, and, if necessary, ask for a family meeting with her care team.
The nurse just left and said that she has "VRE" which from what little I've read so far sounds like another pain to deal with.
Are any of you familiar with this infection? This is the reason for the yellow gowns. She still has a catheter and from what I've read, this should be removed immediately.
Are any of you familiar with this infection? This is the reason for the yellow gowns. She still has a catheter and from what I've read, this should be removed immediately.
I should have said the yellow gowns are to prevent transfer infection to her as well from other rooms. Hospitals these days are breeding grounds for all kinds of bacteria. Thats why they try to keep you as few days as possible.
Your Dad and anyone visiting her should also wear a gown during this time.
Nan
Your Dad and anyone visiting her should also wear a gown during this time.
Nan
No, it should not be contagious to your Dad. I am not a doctor so I will not speculate on what it can be but since you wrote she is not responding to the antibiotics, an infectious disease doctor would be the right way to go.
They saved my husband's life and got him ready for transplant.
Let us know how it goes.
Nan
They saved my husband's life and got him ready for transplant.
Let us know how it goes.
Nan
Thank you so much! I just relayed this information to my Dad and he will ask the Dr is a few minutes.
Is this sepsis and could this be contagious to my Dad?
Is this sepsis and could this be contagious to my Dad?
She may have a bacterial infection in her blood. This happened to my husband. The yellow gowns are so the medical team will not transfer her infection to other patients since they go from room to room. You should not be wondering why...ask for an explanation! You should also ask for a consult from an infectious disease doctor. They are the best doctors to handle a bacterial infection. Do not delay on this. It can get serious fast.
Nan
Nan
I'm not sure what medication she is on for the HE other than the lactulose.
Something strange happened yesterday. They said her SBP wasn't responding to the antibiotics and they changed them. Then, they put yellow tape on her door and all the medical team wears yellow now when they enter her room.
What does this mean???? They are treating her like she has ebola.
Something strange happened yesterday. They said her SBP wasn't responding to the antibiotics and they changed them. Then, they put yellow tape on her door and all the medical team wears yellow now when they enter her room.
What does this mean???? They are treating her like she has ebola.
Is she taking Rifaximin (Xifaxin) also for the HE? My husband has a frequent episodes of HE and takes a minimum of 30 ml of lactulose 2X daily (sometimes 3X) and he takes Rifaximin 550 mg 2X daily. It does help.
You do need to watch out for dehydration and infection which can make HE worse.
I find HE to be the worst thing to deal with of everything these patients experience. You have my deepest sympathy as you move forward with this.
I really do understand what it is you are dealing with. It's just so hard.
Big hug,
Nan
You do need to watch out for dehydration and infection which can make HE worse.
I find HE to be the worst thing to deal with of everything these patients experience. You have my deepest sympathy as you move forward with this.
I really do understand what it is you are dealing with. It's just so hard.
Big hug,
Nan
Thanks again for your responses.
My father talked to her doctor today and asked about being put on the transplant list. She is meeting with the team of doctors and hopefully will tell us something soon.
My Dad basically told her that he wanted her opinion on transplant or hospice. She said my mother would be eligible for either, in other words, she confirmed my suspicions that she didn't have very long.
Her health is not great. She has portal hypertension which I assume would go away with a transplant? She had a heart attack 11 years ago but her heart function is good today. She also has COPD.
She is just so weak now. She hasn't eaten hardly anything in weeks and the HE is really getting worse, despise the lactulose. I think she is losing her will to fight, she is just so tired.
I'm afraid that even if she were to get on the transplant list, that she wouldn't live long enough to get a donor. This is all new to me so I don't now how all of this works, so we are just hoping that finally this new doctor will steer us in the right direction.
It is a tough disease to watch, I can only imagine what it is like to suffer.
Thanks again to all of you for your support and advice. She is in the hands of a team of hepatologists and one primary doctor now seems to be in charge. For awhile, there were just "too many cooks in the kitchen" and nobody seemed to be in charge.
Once again, thanks to all of you.
Susan
My father talked to her doctor today and asked about being put on the transplant list. She is meeting with the team of doctors and hopefully will tell us something soon.
My Dad basically told her that he wanted her opinion on transplant or hospice. She said my mother would be eligible for either, in other words, she confirmed my suspicions that she didn't have very long.
Her health is not great. She has portal hypertension which I assume would go away with a transplant? She had a heart attack 11 years ago but her heart function is good today. She also has COPD.
She is just so weak now. She hasn't eaten hardly anything in weeks and the HE is really getting worse, despise the lactulose. I think she is losing her will to fight, she is just so tired.
I'm afraid that even if she were to get on the transplant list, that she wouldn't live long enough to get a donor. This is all new to me so I don't now how all of this works, so we are just hoping that finally this new doctor will steer us in the right direction.
It is a tough disease to watch, I can only imagine what it is like to suffer.
Thanks again to all of you for your support and advice. She is in the hands of a team of hepatologists and one primary doctor now seems to be in charge. For awhile, there were just "too many cooks in the kitchen" and nobody seemed to be in charge.
Once again, thanks to all of you.
Susan
Just wondering, how is your mother's health otherwise? Does she have other major health problems (I.e. Heart problems, diabetes, cancer, etc).
My husband was 66 when he had his liver transplant. Other than his advanced liver disease, he had no other health issues. I think that would be a big factor on whether she would be eligible for a liver transplant or not. Her age is a factor for sure but if she is in good health otherwise, there may still be a chance. My husband had to go out of state for his transplant as we live in a state where there are just too many waiting and not enough donors.
Did your family consider a living donor? Again that would depend on her health otherwise and the chances of surviving the surgery.
Having gone through this experience, I know how difficult this time is for you.
I am sending you only positive thoughts and prayers your way..
Nan
My husband was 66 when he had his liver transplant. Other than his advanced liver disease, he had no other health issues. I think that would be a big factor on whether she would be eligible for a liver transplant or not. Her age is a factor for sure but if she is in good health otherwise, there may still be a chance. My husband had to go out of state for his transplant as we live in a state where there are just too many waiting and not enough donors.
Did your family consider a living donor? Again that would depend on her health otherwise and the chances of surviving the surgery.
Having gone through this experience, I know how difficult this time is for you.
I am sending you only positive thoughts and prayers your way..
Nan
First, I want to say I am so sorry to hear about your mom's state of health, and I want to send well wishes and prayers for your mom, for you, and the rest of your family.
As Hector said above, none of us are doctors, we are people who have or have loved ones who have Cirrhosis. Several people who have answered your post have experienced End Stage Liver Disease first hand, so you have received some very good answers.
The challenge with advanced decompensated Cirrhosis (End Stage Liver Disease) is that it is hard to predict the course that any one individual patient will follow. Right now her doctors are treating as many of her symptoms as they can. They're treating her infection, her ascites, her edema, her anemia, and her Hepatic Encephalopathy. They're trying to stabilize her current symptoms because any one of these symptoms, let alone all combined, can cause life threatening emergencies. If they have moved her out of ICU, then they most likely feel that she is beginning to stabilize. The MELD score will go up and down, depending upon many factors and immediate problems or improvements in the functioning of the liver. However, in general, since your mom has advanced decompensated Cirrhosis (End Stage Liver Disease also known as ESLD), once her current symptoms are managed and stabilized a bit, her MELD will continue to be high over time.
In the big picture, her liver is failing. How quickly or slowly might that happen is a question for her doctors. Her liver won't get better because her Cirrhosis has advanced to the stage where it can't heal itself. However, her current symptoms and her MELD may improve, should improve, as the doctors treat and stabilize her current symptoms. If your mom's MELD score was 8 only 5 months ago, then at that time her liver was compensated (working well). Unfortunately, if it is 25 now, her liver became decompensated (not working well) over that 5 month period. Don't give up hope, because once her current symptoms are better managed, her MELD will likely improve and her status will not seem as critical as it does right now.
However, it's important to realize that even as she stabilizes and her MELD improves, her liver function must be monitored and managed by a qualified and capable hepatologist.
Nan is right in saying that only a liver transplant will change the big picture. At your mom's age and given general health status, I'm not sure how risky or possible a liver transplant might be.
You ask how long she might have so that you can prepare. Since none of us are doctors, we can't answer that question. I think the best thing to do is to learn as much as you can about advanced Cirrhosis and End Stage Liver Disease, be an advocate for your mom, ask her doctors questions, follow their treatment plan carefully, and find a good hepatologist in a transplant center to make sure that she is receiving the best care possible.
Advocate1955
As Hector said above, none of us are doctors, we are people who have or have loved ones who have Cirrhosis. Several people who have answered your post have experienced End Stage Liver Disease first hand, so you have received some very good answers.
The challenge with advanced decompensated Cirrhosis (End Stage Liver Disease) is that it is hard to predict the course that any one individual patient will follow. Right now her doctors are treating as many of her symptoms as they can. They're treating her infection, her ascites, her edema, her anemia, and her Hepatic Encephalopathy. They're trying to stabilize her current symptoms because any one of these symptoms, let alone all combined, can cause life threatening emergencies. If they have moved her out of ICU, then they most likely feel that she is beginning to stabilize. The MELD score will go up and down, depending upon many factors and immediate problems or improvements in the functioning of the liver. However, in general, since your mom has advanced decompensated Cirrhosis (End Stage Liver Disease also known as ESLD), once her current symptoms are managed and stabilized a bit, her MELD will continue to be high over time.
In the big picture, her liver is failing. How quickly or slowly might that happen is a question for her doctors. Her liver won't get better because her Cirrhosis has advanced to the stage where it can't heal itself. However, her current symptoms and her MELD may improve, should improve, as the doctors treat and stabilize her current symptoms. If your mom's MELD score was 8 only 5 months ago, then at that time her liver was compensated (working well). Unfortunately, if it is 25 now, her liver became decompensated (not working well) over that 5 month period. Don't give up hope, because once her current symptoms are better managed, her MELD will likely improve and her status will not seem as critical as it does right now.
However, it's important to realize that even as she stabilizes and her MELD improves, her liver function must be monitored and managed by a qualified and capable hepatologist.
Nan is right in saying that only a liver transplant will change the big picture. At your mom's age and given general health status, I'm not sure how risky or possible a liver transplant might be.
You ask how long she might have so that you can prepare. Since none of us are doctors, we can't answer that question. I think the best thing to do is to learn as much as you can about advanced Cirrhosis and End Stage Liver Disease, be an advocate for your mom, ask her doctors questions, follow their treatment plan carefully, and find a good hepatologist in a transplant center to make sure that she is receiving the best care possible.
Advocate1955
Thanks for everyone for your help.
I am very frustrated with her Drs. Initially, they told my Dad that her condition was no worse than 5 months ago, now, they give us her numbers:
They are:
albumin - 2.7
bilirubin - 3.5
creatinine - 1.27
inr - 1.7
He said she had a meld score of 25 last night and it was 21 today. Looks like class C on the Child Pugh Score to me, seeing as she has the ascites and HE.
He told my Dad, not to worry about the MELD score?????? He admitted it was bad but not to worry because it would probably drop.
She was an 8, 5 months ago and is now a 21-25???? Is that typical????
I am very frustrated with her Drs. Initially, they told my Dad that her condition was no worse than 5 months ago, now, they give us her numbers:
They are:
albumin - 2.7
bilirubin - 3.5
creatinine - 1.27
inr - 1.7
He said she had a meld score of 25 last night and it was 21 today. Looks like class C on the Child Pugh Score to me, seeing as she has the ascites and HE.
He told my Dad, not to worry about the MELD score?????? He admitted it was bad but not to worry because it would probably drop.
She was an 8, 5 months ago and is now a 21-25???? Is that typical????
COMMUNITY LEADER
"Will the culture show if she still has ascites or is going to show a level of improvement? "
They need to see how the infection is responding to treatment and to see if the infection is completely gone.
"Also, does it sound like she should be taken out of ICU?"
That is a decision only her treating doctor(s) can make.
ICU (intensive care unit) is only for those who need extra attention and care. It is where those with the most severe and life-threatening illnesses and injuries are treated. Conditions that require constant, close monitoring and support from special equipment and medication in order to ensure normal bodily functions during medical emergencies. When it is safe for her to leave ICU they will do so.
Leaving ICU and returning to a normal hospital room is a good thing! It shows improvement and that the crisis is over at least for now.
"The medicine they gave her for the HE is causing diarrhea and she is continually soiling the bed. She also still has the catheter."
In order to treat HE, Lactulose, a syrupy liquid is given either by mouth or enema to flush out the bowels.Toxins from food that remain in the bowel contribute to HE. Constipation as well as infection and other things can trigger an episode of hepatic encephalopathy.
Soiling the bed and catheters are pretty common occurrences with advanced liver disease unfortunately. The nurses are used to this so you shouldn't worry. They have seen it all many times over. We (with advanced liver disease) all loose are dignity at some point along the path of our illness. It goes with the territory I'm afraid. Many time with any advanced disease we have to undergo difficult, out of the normal experiences to get better. It is not always pleasant to say the least, but for the best outcome we must "do what we have to do" to get through it. If we want to get better. If you step back and think about it your mother had a possibly life-threatening infection, to have her stabilized and healthier is now what is important. Going to the bathroom in our beds, having IVs and catheters, and other necessary medical procedure are not what any of us would choose to do. We endure the temporary difficulties so we can get better and continue to live another day. It is not "pretty" but it is effective in helping us to get better. In my opinion all of the suffering we who have or have had a failing liver or advanced liver cancer or both is well worth all we have gone through to live another day. That is what I focused on during my many hospitalizations. I always thought that this is difficult but only temporary and it is helping me to feel better again. So I could live to fight another day.
In other words the doctor(s) are treating her properly to get her HE under control.
"I would think they would keep her in ICU until the infection and ascites is gone? IS it common for a Dr. to release a patient to go home with ascites or will they wait until the ascites is gone?"
Ascites itself is not an emergency. Only when it causes infection is it life-threatening. When ascites becomes dangerous is when it requires hospitalization as does other extreme complications of advanced cirrhosis.
I.E. Disorientation and come from HE, any infection, bleeding varices and other life-threatening complication of advanced cirrhosis. These complications usually can only be managed rarely "cured". Only a liver transplant will "cure" the underlying cause of these complications...a failing liver.
Ascites rarely ever goes away completely. Usually people have some amount of fluid retention all of the time. This is "normal" for those with advanced cirrhosis with portal hypertension (decompensation). The patient must learn to manage and live with the complications. It is common for those with ascites (fluid retention in their abdomen) be able to manage it most of the time with diet and diuretics. A people can have ascites that is not visible to the naked eye. Only an ultrasound, CT scan of MRI can see lesser amounts of liquid. I lived with some degree of ascites for 3-4 years as I waited for a transplant. It is not an emergency to have ascites as long as it can be controlled.
All of these questions would best be answer by the doctors doing rounds at the hospital. They can address your mother exact condition. We can only talk about what is generally true and common. We don't know your mother's particular circumstances which is unique and can change from day to day. Only the doctor's caring for her aware of her condition at the present time.
Write down your questions and then when the doctor do their rounds ask those questions. That is your opportunity to learn more about your mother's condition, prognosis and what you can do to help her when she leaves the hospital.
To learn more about ascites read the article I set you the link to.
* Diagnosis and Management of Ascites
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/ascites-diagnosis-management/core-concept/all
Wishing you and your mother the best. Hang in there.
Hector
They need to see how the infection is responding to treatment and to see if the infection is completely gone.
"Also, does it sound like she should be taken out of ICU?"
That is a decision only her treating doctor(s) can make.
ICU (intensive care unit) is only for those who need extra attention and care. It is where those with the most severe and life-threatening illnesses and injuries are treated. Conditions that require constant, close monitoring and support from special equipment and medication in order to ensure normal bodily functions during medical emergencies. When it is safe for her to leave ICU they will do so.
Leaving ICU and returning to a normal hospital room is a good thing! It shows improvement and that the crisis is over at least for now.
"The medicine they gave her for the HE is causing diarrhea and she is continually soiling the bed. She also still has the catheter."
In order to treat HE, Lactulose, a syrupy liquid is given either by mouth or enema to flush out the bowels.Toxins from food that remain in the bowel contribute to HE. Constipation as well as infection and other things can trigger an episode of hepatic encephalopathy.
Soiling the bed and catheters are pretty common occurrences with advanced liver disease unfortunately. The nurses are used to this so you shouldn't worry. They have seen it all many times over. We (with advanced liver disease) all loose are dignity at some point along the path of our illness. It goes with the territory I'm afraid. Many time with any advanced disease we have to undergo difficult, out of the normal experiences to get better. It is not always pleasant to say the least, but for the best outcome we must "do what we have to do" to get through it. If we want to get better. If you step back and think about it your mother had a possibly life-threatening infection, to have her stabilized and healthier is now what is important. Going to the bathroom in our beds, having IVs and catheters, and other necessary medical procedure are not what any of us would choose to do. We endure the temporary difficulties so we can get better and continue to live another day. It is not "pretty" but it is effective in helping us to get better. In my opinion all of the suffering we who have or have had a failing liver or advanced liver cancer or both is well worth all we have gone through to live another day. That is what I focused on during my many hospitalizations. I always thought that this is difficult but only temporary and it is helping me to feel better again. So I could live to fight another day.
In other words the doctor(s) are treating her properly to get her HE under control.
"I would think they would keep her in ICU until the infection and ascites is gone? IS it common for a Dr. to release a patient to go home with ascites or will they wait until the ascites is gone?"
Ascites itself is not an emergency. Only when it causes infection is it life-threatening. When ascites becomes dangerous is when it requires hospitalization as does other extreme complications of advanced cirrhosis.
I.E. Disorientation and come from HE, any infection, bleeding varices and other life-threatening complication of advanced cirrhosis. These complications usually can only be managed rarely "cured". Only a liver transplant will "cure" the underlying cause of these complications...a failing liver.
Ascites rarely ever goes away completely. Usually people have some amount of fluid retention all of the time. This is "normal" for those with advanced cirrhosis with portal hypertension (decompensation). The patient must learn to manage and live with the complications. It is common for those with ascites (fluid retention in their abdomen) be able to manage it most of the time with diet and diuretics. A people can have ascites that is not visible to the naked eye. Only an ultrasound, CT scan of MRI can see lesser amounts of liquid. I lived with some degree of ascites for 3-4 years as I waited for a transplant. It is not an emergency to have ascites as long as it can be controlled.
All of these questions would best be answer by the doctors doing rounds at the hospital. They can address your mother exact condition. We can only talk about what is generally true and common. We don't know your mother's particular circumstances which is unique and can change from day to day. Only the doctor's caring for her aware of her condition at the present time.
Write down your questions and then when the doctor do their rounds ask those questions. That is your opportunity to learn more about your mother's condition, prognosis and what you can do to help her when she leaves the hospital.
To learn more about ascites read the article I set you the link to.
* Diagnosis and Management of Ascites
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/ascites-diagnosis-management/core-concept/all
Wishing you and your mother the best. Hang in there.
Hector
What is coming through loud and clear in your posts is you don't seem to have very much confidence in your Mom's doctor. This is not good for you or her. Is she being seen by hepatologist who specializes in end stage liver disease? If not, then you should seek a second opinion from a qualified hepatologist. If so, then you should demand copies of her medical records and and a sitdown with the doctor for a full explanation of her current condition and prognosis.
So sorry you are going through this. I can relate as we have had many experiences with doctors of all sorts over the last three and a half years.
They are not all created equal!
Nan
So sorry you are going through this. I can relate as we have had many experiences with doctors of all sorts over the last three and a half years.
They are not all created equal!
Nan
Today's update from the hospital - They are moving my Mom out of ICU to a private room. She still says ascites and is still in a very weakened state with delirium. We are waiting for the culture for the SBP.
I'm confused. Will the culture show if she still has ascites or is going to show a level of improvement? Also, does it sound like she should be taken out of ICU? The medicine they gave her for the HE is causing diarrhea and she is continually soiling the bed. She also still has the catheter.
I would think they would keep her in ICU until the infection and ascites is gone? IS it common for a Dr. to release a patient to go home with ascites or will they wait until the ascites is gone?
Susan
I'm confused. Will the culture show if she still has ascites or is going to show a level of improvement? Also, does it sound like she should be taken out of ICU? The medicine they gave her for the HE is causing diarrhea and she is continually soiling the bed. She also still has the catheter.
I would think they would keep her in ICU until the infection and ascites is gone? IS it common for a Dr. to release a patient to go home with ascites or will they wait until the ascites is gone?
Susan
COMMUNITY LEADER
I understand it has to be very difficult. Liver disease is a very complex illness. It has taken me years of personal experience and a lot of research to learn what I know know.
Remember only the doctor caring for her knows her true health status (having examined and treated her and having the results of of various medical tests) so that is why I recommend you talking with her or him. That way you will know where things stand and you will be able to best help in any way that you can.
Here is more information about Cirrhosis and its complications...
* Diagnosis and Management of Ascites
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/ascites-diagnosis-management/core-concept/all
* Recognition and Management of Spontaneous Bacterial Peritonitis
http://hepatitisc.uw.edu/browse/all/core-concepts
* Diagnosis and Management of Hepatic Encephalopathy
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/hepatic-encephalopathy-diagnosis-management/core-concept/all
* Screening for Varices and Prevention of Bleeding
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/varices-screening-prevention-bleeding/core-concept/all
* Referral for Liver Transplantation
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/core-concept/all
Please take care of yourself as well so you will be able to best help your mother.
Wishing your mother and you all of the best!
Hector
Remember only the doctor caring for her knows her true health status (having examined and treated her and having the results of of various medical tests) so that is why I recommend you talking with her or him. That way you will know where things stand and you will be able to best help in any way that you can.
Here is more information about Cirrhosis and its complications...
* Diagnosis and Management of Ascites
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/ascites-diagnosis-management/core-concept/all
* Recognition and Management of Spontaneous Bacterial Peritonitis
http://hepatitisc.uw.edu/browse/all/core-concepts
* Diagnosis and Management of Hepatic Encephalopathy
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/hepatic-encephalopathy-diagnosis-management/core-concept/all
* Screening for Varices and Prevention of Bleeding
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/varices-screening-prevention-bleeding/core-concept/all
* Referral for Liver Transplantation
http://hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/core-concept/all
Please take care of yourself as well so you will be able to best help your mother.
Wishing your mother and you all of the best!
Hector
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