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Maybe I am wrong and a TP isn't so bad?
I wish! That's crazy that they are so naive that they think a transplant is a nice viable option...........that's not like getting a tooth pulled instead of a filling, and you know that.
If she's a good friend, can you maybe ask her how she feels about being put on a transplant list? Maybe they do know how serious this is and are playig it down as a way to cope??
Godd luck, it would "bug" me too!
Bug
LD
Just because you consider yourself well informed about Hep C does not mean you are qualified to give medical advice, nor are people likely to seek medical advice from a haridresser.
Many people tell their hairdressers things that they don't tell anyone else, kinda like the bartender LOL
Absolutely not suggesting the nurse not follow her doctors advice! Nothing was intended with that, I just find it amazing that people do not seek to understand their health issues or even why they are given certain meds.
Sorry I offended you.
LD
I am a little reluctant to say much about TP's because I know some of the readers are facing them. BUT, I would do anything to avoid it since you will be on antirejection, immunosuppressive drugs the rest of your life (I assume), your life will be shorter and the virus will reinfect the new healthy liver.
With very careful monitoring, they do treat decompensated people on TP lists with a hope of clearing the virus and keeping the expected new liver healthy. If you are decompensated, you are very sick and can't work. Why not try to clear during that time?
Well done to you for giving them this site; so many people blindly follow their doctor without taking any responsibility for their own health by doing a bit of research.
I echo the sentiments of people who've stated that a transplant is to be avoided if at all possible. I tell everyone to keep their own parts if they can so I am not looking for reasons to advocate a liver transplant. But the story, as you've related it, does sound strange.
Mike
Denise
Head hepatologist told me prior to my transplant, "It's best to keep the original equipment, if possible. Removing a liver that does not need to be replaced does the patient no favors."
If she needs to be on the transplant list, this is an indication of imminent life threatening disease (IMO).
Thanks for the responses.
I will say that when it comes to whether treatment should be attempted I would want more than one opinion and especially so when the first opinion is negative. I question whether all doctors - hepatologists included - are completely aware of this subject. Cirrhotics have cleared. Before I was transplanted I was told I couldn't treat and I knew nothing so I believed what I was told. Looking back on it I believe they were totally wrong. I was diagnosed in 1995 and I was riding my motorcycle daily until my transplant in 2000. And even then I wouldn't have gotten a liver if a lesion hadn't been seen on a routine annual scan. I wasn't that sick. I was riding my bike and I could have ridden it to my transplant surgery had the call came at the right (or wrong) time.
I would question the statement that treatment is not in her future before I would acquiesce and just wait to get worse. That's what I did and I was wrong.
Mike
GSD: That being said, it also requires someone who's willing to be self-determined (or have a very strong advocate), step up, and seek out the care necessary, and that is something your friend and her husband can only do for themselves. (Dunno if you already read the below in your other thread...if not..)
Sometimes the only way people deal with a tough situation is to completely ignore the the bad news and focus on the good. Being impersonal and off-hand helps some people cope. (Probably a minority of the people on this forum :), but maybe the majority in the general population...?)
It's not all that unusual for people who are face-to-face with chronic/terminal illness to completely ignore the diagnosis and simply continue on with life as they know it. Denial is sometimes putting off or ignoring the inevitable as long as you can, JUST so you can enjoy the here and now, however short-lived that may or may not be...
Perhaps the doc focused the consultation on the benefits of TP, and left your friend and her husband thinking that: it's 'not that bad' right now (compared to variceal bleeding, encephalopathy, hcc, etc... it's all a matter of perspective, right?), and maybe they're thinking that she's not "terminal," as there is the possibility of liver transplant. Sometimes docs tread a fine line between "education" and "compassion"... I know it must not be easy for you, but sometimes knowledge can be a terrible and painful thing.. and sometimes the methods our loved ones choose to handle problems are a far cry from the choices we would make... and sometimes you have to let the ones you care for to uphold their chosen ignorance so they can feel some bliss. Best wishes,
~eureka
Thank you for all of the good feedback.
Denise
I see you have rethought the "50 gallon" issue. I will still point out that 50 gallons of fluid weighs 417 lbs. He would certainly feel a lot better after the weight loss.
I got the same advise as Mike on not being able to treat with cirrhosis. I have read several articles that would dispute that. This shows the importance of having a hepatologist that specializes in treating hep C, if possible, as they are the only ones likely to be abreast of the latest studies and treatment tailoring options. This changes on a monthly basis. Most GIs are not up to date on these issues.
Brent
Denise
ML
I think most people would be very happy to get listed when their prognosis is poor for survival. No one wants to get a transplant but even fewer want to die. To get listed can do wonders for your anxiety levels brought on by a growing sense of helplessness and the uncertainty of what the future may hold. It might even put a smile on someone's face. It's a fact that a transplant can be just the start of a plethora of new medical challenges---but this is far better than the alternative in most patient's views.
The transplant list isn't a first come, first served type of system. It is based on necessity. If the neediest person has been on the list 5 minutes they get it. In fact, you don't even have to be on a list to get a liver, but this is not a very easy or wise path to go down.
The one exception when time on the list can be a factor is when 2 or more people who have same MELD scores and both share the same blood type and are at the top of their blood type group. In these types of cases, time on the list is the tiebreaker.
ML
When a person has not responded to tx, or has poor chance at succeeding on tx, a transplant isn't a bad option. I wish that I had shown the sensitivity of Newleaf before I spouted off. I'm always learning here and this post is another example of things I don't know enough about.
Thanks,
Bug
PS: were the nonsensical links deleted?