If you have the resources, get a consultation from another transplant center. Your current medical team may be wrong. Let's hope that is the case.
lorrie please try this site i give you...they would know what you should do...you will need to sign in but it's free and they are so sweet and knowledgable about end stage liver disease there...it's the "Liver Failure Support Group" at delphi forums. address your note to "IMKINDLY" she is the group leader and has tons of information...
i lost my mom the same way and it is so sad...i'm so sorry for you and her...but it may not be too late please submit this question at the above liver failure support group site...it is a wonderful help to many that are going through exactly what you are...
if you can get copies of her blood test results from her and post them there too and they have lots of info and ideas on different things the drs can try and patients can do...in this situation you need second and third opinions...don't let it go with just one drs suggestions for her...be proactive...
find out exactly why they say it's too late and she cant'get on a transplant list...they need to give you hard facts!!! many have been in a position of almost succumming to this disease and get a transplant just before it's too late...and they are in horrible condition...
get a second and third opinion from a transplant center...she needs a Meld score and needs to meet some other criteria for a transplant...also ask about a "living liver donation" from yourself or a family member...for this they take out half of the healthy persons liver and it grows back quickly to full size and also grows in the reciepiant...the chicago transplant centers have good success records...
try the two big teaching hospitals in Chicago too...GOOGLE LIVER TRANSPLANT CHICAGO for names and address'.I THINK ONE IS AT UIC medical center, AND THE OTHER IS POSSIBLY BETTER BUT THE NAME ESCAPES ME... TRY GOOGLE "DR. BAKER" LIVER HEPATOLOGIST CHICAGO...ALSO TRY IN WISCONSIN FOR SECOND OPINIONS.
I'D TRY CHICAGO OVER WISCONSIN IF SHE CAN...she needs a prominant transplant center to overlook her case to be sure they are giving her all the help she can get before giving up...i'm not sure how they are in wisconsin...
i pray for her...may God heal her...
i hope someone else here can give you ideas too...
try these for starters
Northwestern Memorial Hospital that's the one i've heard is so good for transplants...
UIC (the one i go to for treatment)
American liver foundation illinois chapter (lists liver drs)
Hi, I'm sure you'll get a lot of good advice from the kind folks here. All I can tell you is my personal story as it pertains to this issue...always remember the liver is a miraculous organ, but everyone one of us is different, so I don't want you to think that i'm implying that what happened to my younger sister is necessarily what is going to happen with your cousin. So much of this depends on the strength and health of a person's other organs, and just plain luck as I see it. My younger sis patty just couldn't get sober, her drug and alcohol addiction was just too strong, and she basically went off to Liverpool England to die, she later said. My mom gets a call from her meathead boyfriend that she was "muttering" to herself for the last few days and what should he do with her? He puts her into a hospital and they call us from England to make funeral arrangements and make arrangements for her remains to be flown back here, she wouldnt make it through the night because she had liver and kidney failure. But she made it through, being incubated, and this went on and on. We flew over there, she looked awful and they still had her on life support, etc. She had all the attendant issues re liver failure, they were draining her water through a tube, she was severely jaundiced, etc. But she kept on going. Fast forward to 4 months later and she was flown back here first class with two nurses by their hospital, they didn't ask us for a dime, everything was paid for by the british govt. She convalesed at my mom's house for another 6 months, but she kept getting better and better. Fast forward again another 3 years, and she's doing okay and walking 4 or 5 miles a day. It took that to get her sober. She has cirrhosis, and her docs say she should go on a transplant list now, even though her liver did come back a bit.(She doesn't have hep c.) She also has a messed up pancreas. But she's alive. No one knows how much time she has left, no one knows how much any of us have for that matter. This is just to say that miracles can happen. And I figure deep down she just didn't want to die. I hope the best for you and your family.
awesome story!!!! if treated correctly alot of cirhotic patients can go for some time!!! i read these miraculous stories at the site i gave above...people living for years with cirhosis and getting transplants and moving on in life...there is always hope!
thank you so much for sharing such a beautiful story...miracles do happen and life is precious...so glad your sister has gotten to enjoy her life...sounds like she doing really well and has lots of loving family....
That was inspiring. I hope your sister goes forward with the transplant because she has made the lifestyle change necessary to make it work.
Lorri - good luck in your plight.
thanks guys, just wanted to put it out there that people can come through what seems like insurmountable circumstances, all the dire predictions of docs not withstanding. I know more than a few and they inspire me to do what I need to do, and I need all the help I can get...I'm kind of a scardy cat. Yes, Patty does seem to be doing okay, in fact, she has more energy that I do and her liver is much worse off than mine, go figure. Some people can have a higher level of funtionality using less of their liver, another "liver imponderable." Please let us know how your cousin comes through, I wish her all the best.
I will keep her in my prayers.
first i will be praying for your family and cousin , now where do live if you do not mind. im from houston texas and we have a great group of dr's. i was told i had a 1 year to live with out the possiblity of transplant, i am christian an i gave this beast to him and he sent a dr. alan glombicki now praise GOD 4 years later im on the transplant list,note i have 5 other dr.s for the liver center. now alan glombicki 713-777-2555. im not well at all but i have good and bad days, hepc 3b,cirr,fribrois,portalhighpertension,esphages bleeds,very enlarge speen,colan and gallbladder acsites. sorry for going on but may lets try a new dr.s Hermann Hospital is a great hospital they have kept me alive 2 years longer than i was told,so let me now if i can help GOD BLESS YA'LL ROBERT
Hello, and thank you for your comment. Can you please let me know the type of diet that was used in your sisters home care. I am taking my brother home in a few days and need all the help I can get. He has the will power, streangth of character and love - I need the proper diet there are so many variables.
I have just found out that my father is dying of the same thing. I hope your cousin can make a better recovery than him as he doesn't want his life and doesnt appreiciate the chances he has been given. I am in turmoil over his condition, so are my brother and sisters. I really hope you have a better ending than me.
I too have seen my mother in and out of hospitals, poked and prodded, kidney machines, full out jaundice, blood vessels in her eyes popped, swollen stomach, spiders all over her body, water tubes, colonoscopies, even a short stint of blindness...I was so mad at her that day walking into the hospital an her eyes were wide open as much as she could open them. Her knuckles were white cause she was holding the rail so tightly and trying to follow the wall and grasping at me while waiting for the elevator. Alcoholism is a horrible disease, and is half the battle. Everytime she gets better and released from the doctor's care she goes back into her routine and drinks again. All I can do is pray....then leave the rest in God's hands.
i just lost my brother to end stage alcoholism--his name was geary and i would like people to know that this disease kills--what is the answer to making someone want to live--i think there are depression, mental health issues that are ignored. God bless us here who have compassion for the sadness and emptiness of addiction
May God Be with you and your family, Just stay strong you could do it.
The Lord will guide you through this difficult times.
To knight2 I'm so sorry for your loss and my prayers are with you and family. I Lost my father too, a few years ago the sad part was that I was not able to see him when he was in the Hospital in Germany. I was 9 months pregnant and having so many complications with my health the doctors said traveling was out of the question. He was in a coma for 16 days I pray to the Lord for my child to be born soon,but with no luck he was 2 weeks overdue.
Sadly my father die and I did not get a chance to say I love you or GoodBye.
Life sucks sometimes but what can we do.
GOD BLESS YOU ALL
To we3lsc/ Lorri
Sorry about your father
My prayers are with you and your family I know its a very sad situation, may God give you strength.
My 42 year old brother was told that it is time for hospice to be set up at home. He has had pancres issues for 3 years from drinking and now his liver is late stage. How much longer do you think he has? and what will happen?
Cirrhosis is not the end. I have a friend who is working full time and has had Cirrhosis for 13 years. Naturally, she is weak and tires daily, but not jaundiced and controlling her problem well. Her insurance at work will not cover treatment and she is begging the Vertex people for a clinical trial entry.
This should inspire everyone (including myself, who is said to be at the beginning stages of Cirrhosis), that all hope is not lost. Eat well, no drinking, no stress, plenty of sleep, and the body will fight.
..And what about those who are lucky enough to actually get a liver transplant and STILL continue to drink??????? And of course, the 6 patients I have seen in the last year like this have all been on state-pay- which means it actually comes out of my pocket so that they have the money to buy more booze. ENOUGH! While I recognize that alcoholism is a disease, it is a treatable one and people should get a grip before hundreds of thousands of dollars are wasted and livers are destroyed by bottles.
has she stopped drinking and will she stop after a trancplant? thats the question.
Here is the other , is there money , if there is you can always go to the transplant hospitals in asia . They will do transplants with good after care , but it is wildly expensive. Until then there are diets and cleansings and meds to help her get back into shape for an operation. It is all the attitude of the dr's . there is a stigma that goes with end stage liver via drinking , the "well she did it to her self" thing . But truth, if she is just going to trash a liver they give her then they wont do it, the asians dont care , just give me the money. i saw this on 60 min, so take it with a grain of salt but money talks
hope you find the help and I will pray for you guys
I am sorry for your pain regarding your cousin's illness and my condolences to all the others who have had to suffer the effects of another's alcoholism.
I currently rent a room from a couple. I watch the man go through half a gallon of Vodka a DAY each and every weekend. I watch him drink maybe half that amount every weekday. He drinks - he sleeps and he works. He does nothing else.
Actions have consequences, The consequences of 10 or 20 years of hard drinking will be liver failure and eventual death. No one should be surprised by this. If a person chooses to be an alcoholic for 20 years then they and everyone around them need to accept the consequences of that person's actions.
There is no magic cure or miracle that can turn back the effects of a lifetime of self-abusive behavior. I'm sorry. You may wish to check out a support group such as al-anon to help you through this.
How much sympathy would one get from having this disease due to drug addiction? One thing is clear people with big bucks (IE David Crosby of Crosby Stills Nash and Young) was a big abuser of both drugs and alcohol and he got a new liver. Why should transplants be given to those that have a potential to still abuse themselves. I have been off drugs for many years and now I am paying the price for what I did by undergoing treatment for HEP C. I am lucky because I am not dead yet and I have realized a reduction in my viral from 7 MIL to almost undetecable after only 2 weeks of treatment. I have no sympathy for those that do this to themselves and even though I have no idea where I got HVC from I have no sympathy for even myself because I did this by using. You have to take responsibility for what you do and my heart goes out to your mother (if she is still alive) but remember there are a lot of people that have liver disease that did nothing to deserve it and they should come first before the rich, the alcoholics and drug addicts like myself in getting transplants. They are the better risk. Luckily for me I am getting better the getting better has to start with respecting the body you are given; only after doing that can you get really well.
I pray for you and hope for a miracle because my father died from the same thing about a month and half ago. Three years ago he made a miraculous recovery and then things had just gone too far and they told us he couldn't be saved a second time. It hurts everyday and I pity anyone that has to go through this terrible thing. Peace be with you.