Looking for People with Alcoholic Liver Disease for Article on 6 month rule

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Skitwin
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Date Joined Jul 2018
Total Posts : 6
   Posted 7/25/2018 3:49 PM (GMT -6)   
Hi everyone,

I am working with a reporter for a major American newspaper to find people for her to interview regarding the 6 month sobriety rule required by many hospitals before someone can be added to a transplant list. You may remain anonymous for the article.

We want you to be heard. Thanks for your consideration, and my very best wishes to all of you struggling with cirrhosis and alcohol dependance. 10 years ago I lost my husband, in part because of this rule.




I have removed your contact information. Please contact the admin@HealingWell.com for permission to post your contact information. Thanks.

Post Edited By Moderator (straydog) : 7/25/2018 5:22:47 PM (GMT-6)


A.Ziffle
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Date Joined May 2011
Total Posts : 2080
   Posted 7/26/2018 9:05 PM (GMT -6)   
Sorry about your husband. I failed the initial agreements within 3 months, Two conflicting appointment at the same time so I chose to get have my ascites drawn off. I blew off the counseling meeting but tried to explain the situation to no avail with my hepatologist. I wound up losing 3 months of visits for that infraction. Had to start all over again because of this mishap ( I had officially 9 months) to complete.

We/I have to prove ourselves to be fully committed to sobriety. I suffered and was at death door before time criteria was made. Druggies/Alcoholics have trouble maintaining sobriety It's well known in the medical community.
A Precious thing like given a pristine new liver in our case has to be meet with assurances and vast scrutiny
should i or your love one fallback into our drug of choice before the sobriety. IT boils down to
Justin or sarah . Justin has a autoimmune case. Never drank or did drugs hes 22. Rick who's been a life long drunk but passed his sobriety time cold turkey. I'd like to live forever. Im 50 years old and seen alot of life. I say he is in front of me easily, Knowing I might die waiting. Death doesn't scare me anymore, I've cheated death so many times in my life.


A.Ziffle pig

Post Edited (A.Ziffle) : 7/26/2018 8:10:37 PM (GMT-6)


Skitwin
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Date Joined Jul 2018
Total Posts : 6
   Posted 7/26/2018 10:32 PM (GMT -6)   
I am sorry, but the data do not support your view. “Druggies” and “alcoholics” are people who suffer from a concurrent, physical disease. I am shocked to see such language used to describe human beings. Less than 10% of people suffering from substance abuse disorder continue after transplantation. Because they are given help. In any case, the outcomes for sober and non-sober patients are nearly identical. You seem to be falling back onto old social mores rather than trying to understand the data regarding addiction. Addiction is over 52% genetic, and is a physical disease.

The United States is part of a minority which chooses to punish people for having this disease. If someone with fatty liver disease caused by overeating were up for a transplant, he or she is not expected to make a similar display of worthiness. I encourage you to do some research before making judgements like this in the future. For starters, I recommend https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394109/.

Good luck to you!

Skitwin
New Member


Date Joined Jul 2018
Total Posts : 6
   Posted 7/26/2018 10:35 PM (GMT -6)   
I do want to be clear, I am not here to educate, and have no interest in debating. If you disagree for whatever reason, that is your right. I am only interested in hearing from people who would like to be interviewed for the article.

ppm guy
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Date Joined Apr 2010
Total Posts : 1226
   Posted 7/27/2018 12:54 PM (GMT -6)   
My twin brother and I, both started using drugs and alcohol, starting in the 60s. we used IV drugs occasionally, but drank alcohol daily. We both found out 35 years later(mid 1990s), that we had hep c and alcoholic hepatitis. I quit drinking at that point. My brother did not. In 2012 my twin needed a transplant. His hep dr., advised him to start AA or a qualified rehab program right away. He wanted him sober with documentation, before he was sent for transplant evaluation. We are both bipolar, with co-disorders, that he had to get under control, thru sobriety. While complying with his drs advise, he got liver cancer. He was evaluated and accepted. His following mri showed his cancer had worsened and was removed from the list.

The rules for transplant seem harsh, especially when they impact you or your loved ones.. Sometimes I think that the family members who care for their loved ones suffer equally or more.. Watching my brother go thru the horrors of end stage liver disease, is a nightmare.

This website deals with alcoholics, and in most cases their significant others. We support, advise, and listen to horrific stories.

In response to your particular topic,
" 6 month sobriety compliance for transplant".. Im in favor of their criteria for TP.. According to UNOS, someone is added to the liver TP list, every 10 minutes.. And 20 people die EVERY DAY, while waiting for a liver transplant..So it is obvious to me that strict rules should apply to transplantation. Alcohol sobriety, is only one thing scrutinized. overall health to survive surgery, and the ability to survive past one year. Mental health to comply with post surgery protocol. There is no data on non sober patient survival post transplant, because they are not transplanted in US.

Good luck with your study.. you should have no problem finding interview prospects.

Skitwin
New Member


Date Joined Jul 2018
Total Posts : 6
   Posted 7/27/2018 2:02 PM (GMT -6)   
I am once again sorry. You couldn't be more incorrect. The is a huge amount of data on this, because the USA is not in the majority. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394109/. Please read up on this. AA has less than a 5% success rate. It is NOT an effective treatment. Intense psychotherapy, drug therapy are the only useful therapies for true addiction. What hospitals in THIS country are doing is not based on probability of survival, it is based on old fashioned, non-scientific perceptions about addiction. We have plenty of transplant physicians who understand this, and are urging the article for this reason. Addiction is a disease, not a choice. That has been understood by Psychiatry since the 1950s. But since so few people donate organs, and because hospitals don't want public flack from an undereducated public, they came up with this rule that is completely not based upon science. Please read up on this. But again, people, I am not interested in non-scientific opinions. I am just looking for people interested in participating. PLEASE start your own conversational thread instead of arguing on this one. Thanks.

Skitwin
New Member


Date Joined Jul 2018
Total Posts : 6
   Posted 7/27/2018 2:06 PM (GMT -6)   
An aside I think might be useful for some of you. https://www.theatlantic.com/magazine/archive/2015/04/the-irrationality-of-alcoholics-anonymous/386255/

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2080
   Posted 7/27/2018 9:36 PM (GMT -6)   
You are bucking the system, That's fine. Your debate platform is well taken. All I can do is state the facts. I been there and done it. Your hypothesizing, Nothing wrong with that if you are not emotionally in the situation. Fact is I'm fifty, payed taxes and been here all my life. I knowingly took a risk to my health by drinking excessively and am no stranger to drugs.
With livers in short supply (at least tested and matching) doctors have to make a godly decision. " Do we give this child a chance to live and hope he refrains from overindulgence or give this long time alcoholic another liver and hope he makes the right decisions? The scales of justice come in. I have met people in my situation online and personally. My heart goes out to all of us affected with or by this disease.
I want peace regardless of the decision or outcome. Arguing what is right and wrong is redundant when the human heart and soul is involved. I am here, Better than a decade after a coma, Kidney and liver shut down and told I would likely be dead inside 3 months.
Debate???? Are you willing to commit a baby or someone who lived a normal life to death over a alcoholic or junkie? Look at human nature or even better animals. We survive because we try and push limits. That makes a survivor. In the wild animals have no advocates. My friend I don't know who or what your link is. Might I guess it's your motive to post here? You surely have no knowledge of humanity or how the system works. Have a nice day.

Ziff

Post Edited (A.Ziffle) : 7/27/2018 8:39:55 PM (GMT-6)


Skitwin
New Member


Date Joined Jul 2018
Total Posts : 6
   Posted 7/27/2018 11:12 PM (GMT -6)   
I believe than people with mental illness are equally “deserving”, yes. I would never feel it is right to deny transplantation based upon someone’s mental health status any more than I would deny transplants to people with horrible personalities.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2080
   Posted 7/28/2018 6:02 PM (GMT -6)   
It is what it is. The rules have purpose. Think for a moment about your words. Mentally ill in my mind is unable to control oneself, Therefore you'd be giving a person a new liver (precious as they are) to someone who isn't capable of managing future medication or other responsible choices regarding health and aftercare. However it could be done. Anything can be done when given a unlimited bank account and a surgeon who's on the take. Your argument for mentally ill being given a level chance of receiving a liver is about as sensible as a Billy Goat in a 3 piece suit.
I have no problem telling you that it felt unfair when I was dying and suffering, It took a year of tightrope walking to understand why the program functions like it does. I'd grit my teeth and take alot of guff from my physicians who regularly scrutinized my sanity and physical ability to survive a transplant. OOPS!!! That brings about another part of the program I'm sure you'll detest. You have to healthy enough to survive but sick enough to die. I can explain why if you like but you might want to re-think the first inhuman issue that you have with the system. Once you get over the emotions of dying and looking for someone to blame you'll find the whole process is very democratic and most human way for people (doctors) to make tough decisions. Good luck with article and please let me know when it gets published.

Ziff
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