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Scared,Worried,PIST-OFF & unknowing?
I have recently moved my 52 yr old Father into my home so that I may care for him he has end stage hep c. 3 months ago his Dr. gave him about 6 months ? Now I dont know anything about any of this except that it ***** watching him be sick and in pain.. It is so hard to not show that I am sad and scared and causes me to be withdrawn from him not knowing anything about whats to come plays a big part in that so if anyone could PLEASE give me some insight I would Sure appreciate it ? We do have hospice come twice a week currently but that really doesn't help me deal with day to day stuff what am I to expect ?? Thanks daughter lost!
thank you for jumping in where it is so hard to tread. this daughter needed your honesty as the unexpected is where the fear usually is the worst. you put it clearly and clinically and touched on the personal aspects, which is really what her mission is about. good job, thanx, buddy,
I there a reason he is not trying to get a transplant to save his life?
Without a transplant he will get sicker and sicker. He will need to be hospitalized more and more for some of the complications of his ESLD. He may go into a coma due to toxins effecting his brain. He may bleed internally. Eventually he will be totally helpless unable to take care of himself and bed-ridden all the time. It is a horrible way to die.
Where is his liver doctor.? You should talk to them. They should be working with hospice to manage his treatment until the end. They can tell you what is likely to happen.
Here is some info about what can happen.
http://www.hepatitis.va.gov/pdf/va02-pt/cirrhosis_hdbk.pdf
Nausea and Vomiting
The liver is responsible for the production of bile, from bilirubin. As the liver can no longer function to process bilirubin, the body may be unable to digest most food. High bilirubin and liver enzyme levels may also contribute to the development of nausea and vomiting.
Fatigue
As the liver loses the ability to process bilirubin, it will accumulate in the blood. High concentrations of bilirubin in the bloodstream may cause sleepiness and foggy thinking. In addition, loss of appetite may mean the patient lacks the energy to perform physical activity.
Abdominal Pain
In end stage liver failure, the liver will often become swollen and tender resulting in pain in the upper, right area of the abdomen. The pain may also radiate to other areas of the abdomen or portion of the back including the right shoulder. In addition, the spleen is often enlarged and painful which may cause abdominal pain on the left side of the abdomen and may radiate to the right back and shoulder.
Abdominal Swelling
A condition known as ascites, wihch is excess fluid in the abdomen, may develop. The abdomen may collect so much fluid that it becomes tight and swollen. This occurs because of fluid leaks from the tissue of the gastrointestinal system and the liver that can no longer be effectively removed by the bloodstream.
Bleeding
Some patients may develop an increased risk of bruising or bleeding because the spleen is not functioning normally to regulate removal of old blood cells. Patients with end stage liver disease are also much more likely to develop gastrointestinal bleeding because of high pressure in the portal veins, which lead from the intestines to the liver. As liver failure progresses, the blood cannot flow through the liver normally and may leak backwards into the intestines.
Encephalopathy
Hepatic encephalopathy is the development of swelling of the brain due to high bilirubin and other blood abnormalities caused by liver failure. The patient may experience dizziness, sedation, foggy thinking, inability to speak and may eventually go on to develop complete sedation or hepatic coma. The Mayo Clinic has stated that encephalopathy associated with end stage liver failure will eventually result in death if liver transplant is not achieved.
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I would make peace with dad, and just love him. Talk about his life and what he has meant to you. Make sure all his legal affairs are in place. Will, etc. You should talk to him about what he wants done and not done near the end. He will probably be incoherent at that time so you will need to make sure his choices are honored.
Sorry to heat that all this weight is on you. Are there any other relatives or friends that can help. Having one person managing his condition is going to be very very difficult.
Best of luck to you. I wish you all the best in a very difficult time.
Sincerely,
Hectorsf
Without a transplant he will get sicker and sicker. He will need to be hospitalized more and more for some of the complications of his ESLD. He may go into a coma due to toxins effecting his brain. He may bleed internally. Eventually he will be totally helpless unable to take care of himself and bed-ridden all the time. It is a horrible way to die.
Where is his liver doctor.? You should talk to them. They should be working with hospice to manage his treatment until the end. They can tell you what is likely to happen.
Here is some info about what can happen.
http://www.hepatitis.va.gov/pdf/va02-pt/cirrhosis_hdbk.pdf
Nausea and Vomiting
The liver is responsible for the production of bile, from bilirubin. As the liver can no longer function to process bilirubin, the body may be unable to digest most food. High bilirubin and liver enzyme levels may also contribute to the development of nausea and vomiting.
Fatigue
As the liver loses the ability to process bilirubin, it will accumulate in the blood. High concentrations of bilirubin in the bloodstream may cause sleepiness and foggy thinking. In addition, loss of appetite may mean the patient lacks the energy to perform physical activity.
Abdominal Pain
In end stage liver failure, the liver will often become swollen and tender resulting in pain in the upper, right area of the abdomen. The pain may also radiate to other areas of the abdomen or portion of the back including the right shoulder. In addition, the spleen is often enlarged and painful which may cause abdominal pain on the left side of the abdomen and may radiate to the right back and shoulder.
Abdominal Swelling
A condition known as ascites, wihch is excess fluid in the abdomen, may develop. The abdomen may collect so much fluid that it becomes tight and swollen. This occurs because of fluid leaks from the tissue of the gastrointestinal system and the liver that can no longer be effectively removed by the bloodstream.
Bleeding
Some patients may develop an increased risk of bruising or bleeding because the spleen is not functioning normally to regulate removal of old blood cells. Patients with end stage liver disease are also much more likely to develop gastrointestinal bleeding because of high pressure in the portal veins, which lead from the intestines to the liver. As liver failure progresses, the blood cannot flow through the liver normally and may leak backwards into the intestines.
Encephalopathy
Hepatic encephalopathy is the development of swelling of the brain due to high bilirubin and other blood abnormalities caused by liver failure. The patient may experience dizziness, sedation, foggy thinking, inability to speak and may eventually go on to develop complete sedation or hepatic coma. The Mayo Clinic has stated that encephalopathy associated with end stage liver failure will eventually result in death if liver transplant is not achieved.
--------------------------------------------------------------------------------------------------------------------
I would make peace with dad, and just love him. Talk about his life and what he has meant to you. Make sure all his legal affairs are in place. Will, etc. You should talk to him about what he wants done and not done near the end. He will probably be incoherent at that time so you will need to make sure his choices are honored.
Sorry to heat that all this weight is on you. Are there any other relatives or friends that can help. Having one person managing his condition is going to be very very difficult.
Best of luck to you. I wish you all the best in a very difficult time.
Sincerely,
Hectorsf
For those of you who are curious, and I know there are many, the picture is Amphitrite Lighthouse in Ucluelet, British Columbia Canada.
I wish I had some magical words for you too but unfortunately I just don't. This disease ***** and most people don't really understand just how much and how tragic it can really be.
I hope that you can find someone to talk to yourself.....as much as you are helping your dad someone needs to be there to listen to you. We, of course, will listen any time you want to vent or cry or yell or whine or whatever. Many of us have seen loved ones die of this disease and everyone of us understands just how serious this is.
I'm so very very sorry for you. You are a wonderful person and daughter to be doing this for your dad and I am sure that he appreciates it even if it seems to you you are pulling back - I'm sure he knows just how hard it is and that he loves you for it with all his heart.
I hope that you can find someone to talk to yourself.....as much as you are helping your dad someone needs to be there to listen to you. We, of course, will listen any time you want to vent or cry or yell or whine or whatever. Many of us have seen loved ones die of this disease and everyone of us understands just how serious this is.
I'm so very very sorry for you. You are a wonderful person and daughter to be doing this for your dad and I am sure that he appreciates it even if it seems to you you are pulling back - I'm sure he knows just how hard it is and that he loves you for it with all his heart.
i read your post a few hours ago and my heart goes out to you. i do not have the information you are seeking however. i am sure each case is somewhat different as are end stage cancer and heart disease. i know also that there are particular symptoms common to late stages. i wonder if your father has a liver doc who might be able to help you through this? hospice is wonderful and they might be able to connect you with professionals to clear some of your concerns. hospice is very good at managing pain but they usually work in conjunction with the family physician. this is a very difficult time but there are ways to make it less painful and hospice personnel are trained to assist not just the patient but the family. do not be afraid to use all the resources at your disposal. i expect some folks on this site will offer you some ideas. meanwhile take care of yourself too and remember that you are giving your dad an amazing gift to be here at this time. best to you a warmest hug, babs
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