Hepatopulmonary (hep-uh-toe-POOL-moe-nar-e) syndrome is a condition that affects the lungs of people with advanced liver disease. Hepatopulmonary syndrome results in low blood oxygen levels caused by blood vessels expanding (dilating) in size and number, which makes it hard for the lungs to deliver adequate amounts of oxygen to the body.
Liver transplant is the only cure for the syndrome.
Everything you are saying is correct.
It may be that they don't want to face the reality of the situation rather than they don't believe you or the doctors. People act in many different ways to end of life issues.
The hospital attending doctors are responsible for communicating to the patient and their family the seriousness of their condition. I am sorry that you feel caught in the middle as you really have no power to change the situation. We are all adults and must take responsibility for our own lives as in the end we will be the one to pay the consequences. Ultimately we can ONLY help people who WANT our help.
It appears to me you have said all you can about the situation and its seriousness.
The only other thing I can think of is you might want to find a social worker or someone who is involved in the patient's stay in the hospital and see if they will talk to the patient's family about the patient's prognosis.
As you said the only hope for this patient is to be listed and receive a liver transplant soon.
Dear Howie I am crying as I answer this. Thank you so much for taking the time to answer my question. I guess I had hoped that there was something I was leaving out. I got the impressions during his hospital stay (he went home yesterday) that the hospital felt that no one could get this far alone without someone telling them.
He thinks that because he has been given oxygen to take home he will be ok. I told his wife, no amount of oxygen is going to help when the fluid returns. I heard the doctor tell him the fluid would return. Thank you for explaining what is happening, maybe I can try one more time.
From what I remember at some point no one is going to withdraw the fluid and he will drown.
Thank you again dear friend you have helped me so many times since 2007. Your dedication, caring, kind manner is so appreciated., I am beside myself with grief.
I look at him, this child hood friend of my husband, best friends since children. I look at his wife a friend of mine for 45 years. It kills me that with what I know I have been unable to help them.
I guess I also look at him and think there but for the grace of God go I.
Yesterday his sister in law had the nerve to say, maybe it is time for him to die. Thank you again.
I totally understand your position. I have been in it many times. It is the toughest part of volunteering at my transplant center. Watching people make poor choices. In the end it is them that will pay the consequences so it really should be their choice even if we may see it differently.
I wouldn't want anyone else making my "end of life choices" for me either.
I have a good friend with Hepatopulmonary Syndrome. After liver transplant he was in ICU for a month because he couldn't breathe enough on his own. I have saw how much he suffered trying to grasp for air.
Yes, people will say the absorb things when "end of life issues" need to be dealt with. Just remember they "just don't get it". Take it with a huge grain of sand.
Unfortunately as his liver disease worsens so will his ability to breathe.
I would continue to support them in whatever ways they can accept you help and maybe at some point they will get the "wake up call" listen to your advice but you can't count on that.
Sorry you are dealing with such a difficult situation.
Hang in there.
Thanks again so much. You, who have been through so much and continue to give, are my hero. Bless you, God must be so proud of you, the difference you have made is astronomical!! God bless you!
Thank you, so kind of you. I appreciate. It is sad. I have tried to help him as much as I can.
Hey there, I think you are right, they are both in denial. All I can do now is be supportive. I have tried as hard as I know how.
Thanks again for your support. There are days I wish I did not know.