It is great to hear the positive comments from others who love each day the we who have had a liver transplant do. I try not to preach to those people who have not experienced living with liver disease and then surviving a transplant. When I do get involved in such discussions I have experienced a certain stigma that some people have about liver disease?
What have some of you experienced?
What do you do to "spread the word"?
I get frustrated when the discussion becomes political and have to defend myself for getting a transplant. The Republican thinking, such as not funding transplants in Arizona, is getting into the national debate and that is very scary. What say you?
Thanks for letting me share some thoughts.
Stay Well and Stay Positive,
Bill - 1 1/2 years post liver transplant
Hi Bill! Great topic. First, let me say that not all Arizona Republicans think that transplants should not be funded. The cases that received national headlines were for people on welfare - it was a welfare program cutback, not a transplant specific issue. And, no, I don't think that a persons financial status should have any bearing on whether or not they receive an organ. The media only wants to fuel the fire, so they only report on part of the story.
I live in Arizona, and my husband (not on welfare) did receive a transplant...his second one, in fact. His was Dec 22nd. His first was July 21st, 1988.
We have not really gotten any negative reaction to his transplant status. I think the biggest problem he had with it was when he was single and self conscious about the scars. As a friend that later became his wife, I was worried about any limitations he might have, or what his "shelf life" might be. As we got to know each other these became amusing memories. He had no limitations while he was healthy, as you know, and I certainly didn't care about his scars. Now we're going through another recovery and this is all new to me. But we're getting there.
As far as spreading the word - I tell everyone. In the hospital, at work, at the grocery - anyone who asks me about my green bracelet gets an earfull! I find that many people have questions, and they are happy to ask when they find someone happy to answer.
Have a wonderful day! Keep spreading the word and happiness!
That is just awesome news about your husband. As a coincidence, my first birthday is Dec. 22nd. My second is my transplant Dec. 18, 2009. I did not mean to knock all Arizonans but those in the Republican party across the nation who treat people as numbers. Good luck to your husband.
Stay Well and Stay Positive,
I'm in California and haven't noticed any stigma related to liver transplants.
This topic often comes up among those of us with hep C as some people assume you got the virus because you are a bad person, did bad things, etc. The amount of ignorance is astounding although, again, I personally have experienced very little of this.
As far as what we can do, I think we need to respond by sharing the many reasons people have liver failure including the fact that often we don't know. The trick is not to be defensive. If you smile and reply to ignorance with information, there is little for the other person to argue against.
The people I've told my story to are usually amazed as I had my live liver transplant in Taiwan since I didn't have insurance. This has led to conversations about the dismal state of insurance and the high cost of health care in the US but, I'm in Northern California, and people here tend to think a bit differently than the mainstream of America.
Hi Bill - I agree this is a good topic for a multitude of reasons. I've had only one 'negative' comment and it was due to ignorance. As Jan said, people seem very interested - with the most common question being how long I was on the list. The majority of people, who have reason to be aware, want to be educated about the process - from getting on the list to recovery as well as way transplant changes my outlook. Of course I'm just shy of 2 months post transplant so I haven''t been speading info for long. lol Font gave good advice on how to deal with persistant ignorance. :) Stay well and happy!r!
Hi Jan, Donna, A. Front, Ramona, and others,
I may have not been clear with my words to start this discussion. Everyone I meet wants to hear my story and is very supportive to me and they are eager to learn more. Although I do not receive anything negative towards myself, I get a sense that there is much work to do to educate and raise an awareness that is currently missing. It may be own stuff that just wants to do more to have a positive impact. A medical professional (psychiatrist) once told me there is a stigma, due to ignorance, that gets in the way of improved treatment and outcomes. I started the discussion to include others and broaden my own perspective.
Thanks for participating.
Stay Well and Stay Positive,
I absolutely agree with you. The biggest thing I've noticed is that the word "hepatitis" automatically means drug and/or alcohol abuse. People don't realize that it simply refers to the liver!
My husband possibly has auto-immune hepatitis....and people still ask if he's an alcoholic. I say 'possibly' because they have never given a positive / confirmed diagnosis. He even asked the doctors before his first transplant - if his limited drinking had caused his liver to go bad. He was 18 yrs old. They said that it wasn't even possible for him to have had enough to drink at that age to ruin his liver as bad as it was.
I really have a problem with folks (including medical personnel) who have an immediate idea that all people who have liver disease have had a drug problem or an alcohol issue. While those of us who know that many problems cause liver disease, these uninformed people are very narrow-minded.
We all know that some problems are caused by previous indiscretions, the same stigma persists that patients who have former drug or alcohol issues are still actively abusing and to give them a liver is a waste of organs.
I have actively attempted to change this view point by trying to inform my co-workers that these ideas are not fact.
Being open with my husband's liver problems (Hep C and a Viet Nam era veteran) may have helped a little. You see, if he ever became an inpatient at the VA where I work, my coworkers would see his history anyway. I also had a dear friend who died with NASH. This sweet, kind soul never drank in her life and every time she went to the doctor she was asked if she was an alcoholic. This really hurt her everytime this happened.
We need to keep attempting to inform these people of the truth (in a kind way) and hopefully over time, attitudes will change.
Actually - years ago a Gastro I saw did immediately assume it was my fault that I had hep C...as if we all would have done something knowing it would cause a problem like this.
Hep C wasn't even known to exist when I was being a stupid teenager. But actually I got mine from a prophylaxis against hep B...they used live blood Gamma Globulin at the time that was carrying the Vietnamese Hep C and I got treated when my brother got Hep B.
One other Doctor has treated me with the same attitude since (at my TP Hospital). I told my coordinator I'd never see him again and told everyone in the program about him.
I’ll throw my two cents worth in also. During my first month in the army in 1970 I came down with hep b. Turned yellow lost a lot of weight, in the hospital for a month and nearly died. And I’m not going to sugar coat this. I lived through the 60’s. And I lived it. Yes we did some drugs. All kinds. I’m not sure how I lived through it. It you weren’t there then you couldn’t understand. It wasn’t just a few drug addicts hidden away in the dark corners of the streets in back alley ways, huddled in little groups of degenerate low life’s. There were parks full of people sharing bottles of acid laced wine, passing joints around by the dozen, and yes now and then someone would having something to snort or shoot up. These were people you went to school with. You neighbors, your friends. Kids you grew up with, egged and papered houses with. Girls and boys you first made out with, smoked cigarettes with, learned about sex from. People you trusted. People I still trust today cause I’m lucky enough to sill have friendships with people I grew up with. I’m 60 yrs old and have friends I’ve known since I was 12. How great that is. We know stuff about each other no other people know. That’s just priceless in my mind. And yes we had some wild times, but we became productive members of society. Have families. Only two people from the neighborhood have hep c. Both of us were in the army. The thought nowadays is we got it from the shot gun they used to give us a dozen shot at a time. I remember it. Standing in line. Bang, one after another. Not cleaning it, just bang bang down the line. My doctor thinks the hep c was piggy backing on the hep b. All they knew about in those days was A and B. I didn’t know about C until the late 90’s. I believe the majority of infected people comes from the army and blood infusions. I really doubt that drug addicts are more that 10 percent of the problem. The army cannot admit they passed it around or they would have to start caring for all the vets that have it. They’re just now accepting responsibility for Agent Orange and I’ve got a friend that’s been fighting that for 30 years and he’s in really bad shape and they only gave him 10 percent disability. If the government had to admit the blood supply was infected they would have to start paying and it would break the country. So the easiest way is to blame it on the hippy culture of the 60’s. I’m sorry that just doesn’t fly with me. There were too many of us. If that was the case the liver disease would be the number one cause of death. I’m 60 and single. If all the hippies from the 60’s passed it around I would have been able to find a girlfriend. But there aren’t that many people. It was the army and the blood supply. But it is what it is. I wish the best for all my hep c friends and I understand the stigma. Just my two cents. Good luck to all. Tom