Aa
End stage liver disease
My sister has cirrhosis due to HepC. In the past two months she has lost over 50 pounds in muscle mass, her immune system can't heal leg sores and she has profound weakness. Her meds include morphine and methadone for pain control, but she needs a lot. I am her caregiver and need to get input from others who have been there near the end of life and need some help with what to expect. She has bouts of hep. encepalopathy, ascites, thin blood. She in on Pegysus therapy. I know she is nearing the end, but the Doctor says she can't give any time frame, which I understand. She can't be left alone at all due to pain management and frequent falls. Thank you.
hello my name is samantha and i'm 17 years old and my father of three has had hep c since 1988 and he is on his last limb but he has a drinking problem i juss moved back in with him after 6 years and i'm scared i'm goin to wake up adn find my father dead one morning he hides everything about his problem what do i do what should i execpt
my husband just died december 28 2006 2 days after christmas and 2 days before our 20th anniversary i think he had to have planned it that way i dont no.
he got so sick so fast we learned he had liver disease the first of nov . he went to doctor every 9 or 10 days to have parencentesis done the 3rd time in dec he got worse he was already on four cups of fluid a day and strick diet ,so he was losing wieght he got so thin except in the stomach i could litterly see the blood running in his viens he stopped eating any thing the middle of dec his blood pressure dropped down to 60/40 several times in the hospital . he was put in icu around the 17th up to that day he was not eating but that night he had his last meal steak and potatoes with all the trimmings that meal was gone in 10 min or less i could not understand, he was so sick and not eating any thing for at least 10 days
the doctor let him go home for christmas it was so heart breaking, he just laid on the bed and said nothing at all his memory was not good, he couldnt hardly walk, he just wasnt there he had this blank look on his face ill never forget ,
i will never get over his death
the doctor tried to get him on the transplant list but here in ark you have to be evaluated first. they told me it would be around the first of january i dont understand why this all happened he was only 49 he was not a alcoholic he might have drank a six pack a week.
his last night was in hospice he was on morphine drip that morning he said wipe that stuff off your face and quite crying i love you ..that was the last conversation we had. he started hurting in his back so the doctor put him on the morphine drip. they said his kidneys failed. he never said another word .he died that night i miss him so much. i am gratful that god didnt let him suffer much longer .i cant tell you much execept that hospice did take care of his pain when the doctor could not you have a long road ahead of you. take of your self spend every moment with your sister. im praying for you all.
he got so sick so fast we learned he had liver disease the first of nov . he went to doctor every 9 or 10 days to have parencentesis done the 3rd time in dec he got worse he was already on four cups of fluid a day and strick diet ,so he was losing wieght he got so thin except in the stomach i could litterly see the blood running in his viens he stopped eating any thing the middle of dec his blood pressure dropped down to 60/40 several times in the hospital . he was put in icu around the 17th up to that day he was not eating but that night he had his last meal steak and potatoes with all the trimmings that meal was gone in 10 min or less i could not understand, he was so sick and not eating any thing for at least 10 days
the doctor let him go home for christmas it was so heart breaking, he just laid on the bed and said nothing at all his memory was not good, he couldnt hardly walk, he just wasnt there he had this blank look on his face ill never forget ,
i will never get over his death
the doctor tried to get him on the transplant list but here in ark you have to be evaluated first. they told me it would be around the first of january i dont understand why this all happened he was only 49 he was not a alcoholic he might have drank a six pack a week.
his last night was in hospice he was on morphine drip that morning he said wipe that stuff off your face and quite crying i love you ..that was the last conversation we had. he started hurting in his back so the doctor put him on the morphine drip. they said his kidneys failed. he never said another word .he died that night i miss him so much. i am gratful that god didnt let him suffer much longer .i cant tell you much execept that hospice did take care of his pain when the doctor could not you have a long road ahead of you. take of your self spend every moment with your sister. im praying for you all.
Yes I do agree with Thanbey ... Jax is a great place. I've been all over the state of FL - I have settled in with Jax and see Dr. Dickson there and his staff. They are kind, caring and professional. They have a separate transplant center and it is easy to get to and definitely worth the trip. I drive 3 hours each way - total of 6 in a day .... and know in my heart I'm in the right place. Give them a call and I will be praying for you.
You have been given excellent advice to take your boyfriend to the ER in Jacksonville. They are excellent there. I have had several patients report the good care and caring team. They also do not (or haven't had) the long wait times, so the chance of getting a liver in time is pretty good.
Make this your highest priority. See what you can do to organize a transfer by ambulance, and if that isn't possible, I'm sure the staff at the hospital will time this so that he will be as comfortable as possible. Don't be afraid. I even had a friend travel from Belgium to the USA for an emergency transplant. She is five years post transplantnow and out riding her horse! There is plenty of reason to hope, but you must act.
Also, ask for the services of the hospital social worker at the hospital he is in now. They have a ton of information and resources to help, as well as being able to provide some professional support for you in this process.
If your boyfriend has not designated a durable power of attorney to you for healthcare decisions, the social worker can help you with that, too.
My very best wishes to you both. Let us know what happens.
thanbey
www.hcop.org
Make this your highest priority. See what you can do to organize a transfer by ambulance, and if that isn't possible, I'm sure the staff at the hospital will time this so that he will be as comfortable as possible. Don't be afraid. I even had a friend travel from Belgium to the USA for an emergency transplant. She is five years post transplantnow and out riding her horse! There is plenty of reason to hope, but you must act.
Also, ask for the services of the hospital social worker at the hospital he is in now. They have a ton of information and resources to help, as well as being able to provide some professional support for you in this process.
If your boyfriend has not designated a durable power of attorney to you for healthcare decisions, the social worker can help you with that, too.
My very best wishes to you both. Let us know what happens.
thanbey
www.hcop.org
Sistersue,
this is hard to share but,last year i went through the same thing with my mom. she had the same situation with the cirhosis,leg sores and everything you mentioned...i went through an extreemly hard time with it all...it is a very difficult time you are entering...my heart goes out to you and of course my prayers...
first,i would ask your dr.if they have any hope that she will come out of this. if not, you really should take her off the hepc meds...as mentioned above...they are painful in and of themselves and will not add anytime to her life and is probably making her more sick and miserable...it is a very hard drug for even a "healthy" person to be on...
if she is given any time by the drs and if she is a canidate then i would pursue a transplant vigorously,if at all possible...that is her only hope at this stage in the liver damage...
perhaps the interferon alone, like a "maintanance" dose (which is usually alot less medicine and no ribaviron) may help with the liver inflamation some but,the plan of eradicating the virus at this stage isn't necessary if she doesn't have enough time...(because the liver condition is deteriorating fast with or without the virus at this stage).
so ask the dr what's the point of having her on those painful meds?
maybe they're trying to clear her of the virus before the liver transplant...is she on the list?...if this is the case getting rid of the virus makes sense...get to the bottom of this liver plant issue with the dr...like i said when you are at this point in the disease the transplant is the only hope for survival.
After you get the transplant you can resume trying to kill the virus if you haven't before the transplant...there are people here who have done that very thing...
the hardest part for me to handle with my mom was when she was at the very end, after she went into the coma. the drs proposed that we should take her off various medicines designed to keep her alive...this is where hospice could have helped me i think and her...but,before the coma my mom did not want to talk about it and she said no to the hospice care she didn't want to talk to anyone about what she wanted in the end...that left me and my brother to have to make her decisions for her after she lost consciousness...that was extremely difficult for us because i instinctively wanted to keep her alive no matter what...
for example; in the very end,when the drs decided she was going to die reguardless,they began asking me and my brother to make some very difficult desisions...like, do you want us to stop feeding her and giving her certain meds to keep her going? (not pain medicine of course)...like meds to keep the heart going etc...we couldn't handle these questions emotionally at that time...it was tearing us up...i had wished my mom had signed a last will and testament and let it be known if SHE wanted heroic interventions taken in the end like resuscitation OR for us to just make sure she's kept comfortable and let her go...
see, in the end it's about either making them more comfortable or trying like heck to get them to survive this. you would think that would be the same issue but, it's not... getting food through a tube down the mouth is not comfortable for a dieing person...and they don't need it when there body is shutting down...etc...
so,i hope you can talk to your sister about these things ahead of time so she can decide her own plan.
the other thing i learned is what catherine said above that the real issue,in the end is...pain management...and lots of love and support...spending quality time with her and making her last days meaningful for you both...
i pray for your whole family in this sad time...we had a pastor come talk to us and pray for us in the hospital and this was very good...it gave me alot of peace...and alot of people want to connect spiritually at the end of there time here on earth...they want to understand what happens afterward...she may want to talk to a pastor or have a some scriptures read to her...i personally believe that this is NOT THE END Spiritually for them. the body may die but the person will live on eternally...this is what God in the bible Promises us...and i for one belive it with my whole heart...
i have told you some very hard things...but it sounded like you really wanted help knowing what to expect...i hope i havent been insensitive in what i've said. i feel i can understand what your going through and wished i understood more about when it was happening...but i didn't...and it made things even harder...i kept trying to "save" her life and i think i caused her more pain...but i didn't see this until it was over...i did do my best though out of pure love given what i knew...and that's what counts...
there is a support group on the web that is very informative about cirrhosis care and they will be able to help you in some other ways that are more medical...the people there are really sweet and caring too...perhaps they can hit on somethings we're forgetting about or just don't know about...
my heart and prayers go out to you and your sister...remember,God is our great Comforter...and He loves us so very much and wants to be with us. Cling to Him and he will help you both...reading His word particularly the Psalms and New Testament helped me so much and i and the pastor read them to my mom and it gave her alot to hope for and alot of comfort...my love and prayers go to out you and your sister, sandi
http://groups.msn.com/CirrhosisSupportGroup/_whatsnew.msnw
this is hard to share but,last year i went through the same thing with my mom. she had the same situation with the cirhosis,leg sores and everything you mentioned...i went through an extreemly hard time with it all...it is a very difficult time you are entering...my heart goes out to you and of course my prayers...
first,i would ask your dr.if they have any hope that she will come out of this. if not, you really should take her off the hepc meds...as mentioned above...they are painful in and of themselves and will not add anytime to her life and is probably making her more sick and miserable...it is a very hard drug for even a "healthy" person to be on...
if she is given any time by the drs and if she is a canidate then i would pursue a transplant vigorously,if at all possible...that is her only hope at this stage in the liver damage...
perhaps the interferon alone, like a "maintanance" dose (which is usually alot less medicine and no ribaviron) may help with the liver inflamation some but,the plan of eradicating the virus at this stage isn't necessary if she doesn't have enough time...(because the liver condition is deteriorating fast with or without the virus at this stage).
so ask the dr what's the point of having her on those painful meds?
maybe they're trying to clear her of the virus before the liver transplant...is she on the list?...if this is the case getting rid of the virus makes sense...get to the bottom of this liver plant issue with the dr...like i said when you are at this point in the disease the transplant is the only hope for survival.
After you get the transplant you can resume trying to kill the virus if you haven't before the transplant...there are people here who have done that very thing...
the hardest part for me to handle with my mom was when she was at the very end, after she went into the coma. the drs proposed that we should take her off various medicines designed to keep her alive...this is where hospice could have helped me i think and her...but,before the coma my mom did not want to talk about it and she said no to the hospice care she didn't want to talk to anyone about what she wanted in the end...that left me and my brother to have to make her decisions for her after she lost consciousness...that was extremely difficult for us because i instinctively wanted to keep her alive no matter what...
for example; in the very end,when the drs decided she was going to die reguardless,they began asking me and my brother to make some very difficult desisions...like, do you want us to stop feeding her and giving her certain meds to keep her going? (not pain medicine of course)...like meds to keep the heart going etc...we couldn't handle these questions emotionally at that time...it was tearing us up...i had wished my mom had signed a last will and testament and let it be known if SHE wanted heroic interventions taken in the end like resuscitation OR for us to just make sure she's kept comfortable and let her go...
see, in the end it's about either making them more comfortable or trying like heck to get them to survive this. you would think that would be the same issue but, it's not... getting food through a tube down the mouth is not comfortable for a dieing person...and they don't need it when there body is shutting down...etc...
so,i hope you can talk to your sister about these things ahead of time so she can decide her own plan.
the other thing i learned is what catherine said above that the real issue,in the end is...pain management...and lots of love and support...spending quality time with her and making her last days meaningful for you both...
i pray for your whole family in this sad time...we had a pastor come talk to us and pray for us in the hospital and this was very good...it gave me alot of peace...and alot of people want to connect spiritually at the end of there time here on earth...they want to understand what happens afterward...she may want to talk to a pastor or have a some scriptures read to her...i personally believe that this is NOT THE END Spiritually for them. the body may die but the person will live on eternally...this is what God in the bible Promises us...and i for one belive it with my whole heart...
i have told you some very hard things...but it sounded like you really wanted help knowing what to expect...i hope i havent been insensitive in what i've said. i feel i can understand what your going through and wished i understood more about when it was happening...but i didn't...and it made things even harder...i kept trying to "save" her life and i think i caused her more pain...but i didn't see this until it was over...i did do my best though out of pure love given what i knew...and that's what counts...
there is a support group on the web that is very informative about cirrhosis care and they will be able to help you in some other ways that are more medical...the people there are really sweet and caring too...perhaps they can hit on somethings we're forgetting about or just don't know about...
my heart and prayers go out to you and your sister...remember,God is our great Comforter...and He loves us so very much and wants to be with us. Cling to Him and he will help you both...reading His word particularly the Psalms and New Testament helped me so much and i and the pastor read them to my mom and it gave her alot to hope for and alot of comfort...my love and prayers go to out you and your sister, sandi
http://groups.msn.com/CirrhosisSupportGroup/_whatsnew.msnw
Thank you everyone for your kind messages and support. My sister is on Pegysus to keep the viral load down and she has no sides from it. She was on interferon, peg-intron, ribaviran and Pegysus. Her liver Dr. decided to keep her on a maintenance dose in order to keep the viral load down. I also questioned this fact, but he said since she was tolerating it, to continue. Also, she is not a candidate for transplant. We were at the Univ. of Washington liver center for that consult and because she has a pre-leukemia condition called myelodysplasia, she is not a candidate for transplant. The Hep c was diagnosed at Fred Hutchinson Cancer Center when she was being considered for a bone marrow transplant for her leukemia. So, as you can see, we are dealing with many difficult medical problems and her Doctor's are just giving her palliative care as symptons crop up .
She has voiced concern about leaving her kids and just yesterday wanted to know if she could get life insurance. Of course, I explained that she was uninsurable. Her kids are all over 20 now and they are having a hard time watching their mom fail. They tend to stay away as much as possible and I understand that. Their father died two years ago from Hep C and the children are facing things in their lives that was hidden from them for over 20 years.
Thanks to all of you for your input. I will continue to make her comfortable, have good conversations and make life a positive event every day. God bless.
She has voiced concern about leaving her kids and just yesterday wanted to know if she could get life insurance. Of course, I explained that she was uninsurable. Her kids are all over 20 now and they are having a hard time watching their mom fail. They tend to stay away as much as possible and I understand that. Their father died two years ago from Hep C and the children are facing things in their lives that was hidden from them for over 20 years.
Thanks to all of you for your input. I will continue to make her comfortable, have good conversations and make life a positive event every day. God bless.
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