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.

[cuteus]

Having you with her through her transition to another existence is the best gift she can have.  Is hospice available to her?
They can make this transition a significant experience for all involved and provide you with much needed medical information on the end of life.
A wonderful psychologist wrote several books on death and dying(Kubler-Ross) when you feel strong enough to read them.
best to you and your family

[Amerabrit]

I am so terribly sorry your sister is suffering so much;  I can only imagine how hard it must be for all of you:(
While she may not always be able to express it, your sister must feel blessed to have you with her, she must love you very much...
Stay strong..

[catherine194]

Your sister will eventually go into a hepatic coma. It is imperative that she continue to receive pain control with a morphine drip and ativan for rest. She should be positioned to comfort. If she chooses not to eat or drink that is ok. She will need mouth care and perineal hygeine. Hospice is ok but if you feel she needs more morphine or ativan intravenously and the nurse doesn't speak up. Insist on it. Pallative care is of the utmost importance. Talk to her and if you are comfortable with this tell her it is all right to go. Make sure you have the living will and medical power of attorney on record. If she is a do not resusitate that does not mean no care. She is very lucky to have such a caring sister. My prayers and support.

[woodbeegood]

be sure to take some time for yourself-i know how hard that is to do-i was my mother's primary caretaker in her last weeks; it can be so overwhelming-my thoughts and prayers are with you & your family

[thanbey]

Please clarify why your sister is on Pegasys therapy and is that sick.

Pegasys therapy has no value for an end stage patient and it can make her suffer more.

Is she seeing a hepatologist? If not, why not? If you have a university medical center remotely close to you, has she been seen there? If not, why not?

Has transplant been discussed, and if not,why not?

If you need to find out more about a center or want more information, feel free to contact me at ***@****

I'm hoping that we can make your sister more comfortable, at least, and functional at best.

My heart goes out to you.

thanbey

[twotells]

God bless you for your devotion to your sister.  The end stages of liver disease are difficult to hear about- but important to know about.  I'll pray for you and your sister.

My pain management for neuropathic pain includes a drug called Neurontin.  I don't know whether part of your sister's pain is neuropathic, but if it is, you might want to discuss it with the doc.  Bless you,  Dave

[Sujo]

My thoughts and prayers are with you and your sister.  She is truly blessed to have you in her life.

Sue

[BD146]

God Bless the two of you. Your sister is blessed to have you by her side when she needs you the most.
I lost my only brother 8 years ago today to the other disease, Aids. You will never imaginge the guilt I have today that I did not spend more time visiting him at the nursing home prior to his departure.  If I had it to do all over again, I would have taken time off from work, which would have been approved through FAMILY CARE LEAVE, and would have been there to at least hold his hand.  He was in the nursing home for 18 months, lost his sight and his mind, and was bed ridden. The only comfort I have is that my mother never missed a day. Even during a blizzard she made it to the nursing home.
I will pray for both of you.  I will pray for her comfort, and I will pray for your strength.  
God Bless.... Edgar

[MajNeni]

I know you are experiencing a very difficult, wrenching time.  The others have said many good things already; I would add that you must make sure to take care of yourself, as well.  You need some time out to walk, see the sun, chat with someone, rest, and laugh a little.  Otherwise the load is even heavier.  I know.  I've been there.   Maj Neni

[jonilynn]

God Bless you, and everyone here who has given caring informed advice. I can't even imagine what you are going through.
my prayers are with you.

[LvdByGod]

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 (inflammation) 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

[SisterSue]

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.

[LvdByGod]

elbi, you are so welcome here for support...we will be praying for you and your fiance...i do so pray he gets his liver soon...

if you want more cirrhosis info you may want to try the link i posted above to sistersue...that's where i go sometimes to keep informed about cirhosis stuff...


http://groups.msn.com/CirrhosisSupportGroup/_whatsnew.msnw

[Elbi]

Hi,

My fiance was diagnosed with cerrhossis in Decemeber.  He also has Hep C.  After many stays in the hospital, he felt ok for about 7 weeks.   This week he was hospitalized for stomach pains and extreme bloating.  His eyes are jaundiced.  I do not know much about all this.  I know that he needs a liver transplant or he will not make it.  His doctor has told us this.  Tonight he is in the hospital still, he just told me he has a temp of 101.  His leg are really swollen.  He was tapped but it has not helped that much.  We live in South Florida and there are no liver transplant hospital in our county.  The closest one is in Miami.  He has not even had a liver biopsy yet.  We do not have alot of money but thank god he has state insurance.  We were told by the hospital doctor to go to Jackson Memorial Hospital in Miami and just go to the ER and have them admit him.  I feel so helpless, its like I am almost in denial.  He is only 40 years old.  From what I have been reading on here, I know his health care has not been what it should be.  I imagine its because of the insurance.  I do not know where to go for support.
Can someone please tell me where to start.  Thank You and God Bless.

[SisterSue]

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.

[thanbey]

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

[itsnotover]

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.

[mary joe bryant]

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.

[lonley in fl]

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

[FloridaMouse]

My advice, hope for the best, expect the worst.  I was raised by an alcoholic mother.  She drank until the day she died.  It's not a pretty thing to have to deal with and it tends to make one grow up way before their time.  Don't try to force sobriety because you can't and you will just repeatedly set yourself up for dissapointment.   And remember, if is not your job to take care of a parent who will not make an effort to help themselves.

Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 wks of tx on 4/13/07
relapsed 9/20/07

[seabean]

Sorry to hear about your situation...not a good place to be in at 17 years old.  I agree with Mouse,  Dad won't quit now if he does not want to.  You said that your father has had HCV since 1988 and he is on his last limb.......is that your opinion or a doctors?  Almost everyone on this forum has had hep c for over 20 years; so having it for 19 years is not unusual.  Of course, your scared, chronic illness is scarey but you will find the strength to make it through this.  My thoughts & prayers are with you.

[niceguy2007]

very disturbing to read this. i pray you guys find peace and solace and may God cure the illness.  Amen.

[caleab]

hi my name is rodena i have just read your posts and i think the support is great i was wondering if anyone would be able to tell me if my sister suffered at the end she died 8 weeks ago from liver failure i cant believe she died so quick i was with her a couple of hours before and she was fine i cant get over the fact that i missed her death by 4 minutes by the time the hospital phoned me i would be grateful if anyone could give me any information on why this happened.

[REVRAT]

IT'S HARD TO DEAL WITH WITHOUT THE ONE THATS DRINKING WANTS TO STOP. I WAS INFORMED OF HCV IN THE MID 90'S WHILE DONATING BLOOD.WHEN I WENT TO THE DOCTOR HE TOLD ME TO QUIT WHICH I DIDN'T.I WAS A FAIRLY HEAVY DRINKER UNTILL MUCH LATER. THE PERSON WILL QUIT WHEN FACED WITH LIFE OR DEATH USALLY.THIS  TIME WHEN I WENT TO THE DOCTOR I WAS TOLD TO QUIT OR DON'T WASTE THEIR TIME. ALCOHOL HAS TO BE STOPPED AT  ALL COST TO EVEN HAVE A CHANCE!  HOPE HE LEARNS QUICKER THAN ME    I AM AT END STAGE AND MY BROTHER DIED LAST YEAR FROM IT. THIS STUFF DOESN'T PLAY AROUND  TRY TO HELP HIM SEE!!

[REVRAT]

SORRY FOR THE UPDATE AND MAY GOD TOUCH YOUR HEART WITHHELP. THE TIME WE HAVE WITH EACH OTHER NEVER SEEM ENOUGH MANY PEOPLE HERE THINKING OF YOU