Is this normal behavior for someone needing an organ transplant?

[fngTony]

Family member (40yo) needs a liver. He doesn’t have health insurance which is complicating things. Overall he’s downplaying the seriousness of this and isn’t taking the necessary steps to get on the list or get some sort of health coverage. The more anyone tries to help with daily tasks, give advice or ask questions the more he and his wife pull away. Is this normal state of denial or signs of mental illness/depression? Just seems extremely odd to be complacent about this.

 

[journeyman713]

Chances are, he needs a liver due to his own doing.
If a lifestyle change hasn't happened already, it probably won't ever.
Not sure what the requirements there are for a transplant, but a lifestyle change, is probably near the top.

 

[KHNC]

No reason he shouldnt be able to get health insurance thru ACA during open enrollment. Crazy that he didnt bother to do it. Unless he makes a shit load of money he can get a supplement from GOV to pay for most all of the cost. Earliest he can get covered now would be Jan 1 2024 though. He can enroll after Nov 1 2023. He should at least do that unless he plans to bankrupt his family. I assume he wont be getting any surgery before then anyway sounds like. Best of luck to him and your family as well.

 

[S-3 ranch]

Chances are, he needs a liver due to his own doing.
If a lifestyle change hasn't happened already, it probably won't ever.
Not sure what the requirements there are for a transplant, but a lifestyle change, is probably near the top.

^^^^^ amen ^^^^
had a family member who wouldnt do the lifestyle change and was in extreme denial about the situation, also kept his family in the dark about it
liver failure is very very painful in the end stages

 

[Turkeygetpwnd38]

It must be common enough, have a family friend, mid 40s, is a cardiac surgeon, needed a transplant and continued to act like everything was fine and deny until it couldn’t be denied anymore (swelling, couldn’t eat, extreme weight loss, hospitalization). He got the transplant and his habits haven’t change, will likely buy him 4-5 years. I’m convinced he is still in denial.

 

[Sam Colt]

Sometimes you just have to realize - life ain’t for everyone.

Do the best you can for yourself and those you love.

 

[Chuckybmd]

Family member (40yo) needs a liver. He doesn’t have health insurance which is complicating things. Overall he’s downplaying the seriousness of this and isn’t taking the necessary steps to get on the list or get some sort of health coverage. The more anyone tries to help with daily tasks, give advice or ask questions the more he and his wife pull away. Is this normal state of denial or signs of mental illness/depression? Just seems extremely odd to be complacent about this.

I think denial is a pretty strong factor in situations like this. I’d say it’s a typical male response. Depression certainly is possible as well.

Has never ceased to amaze me how many people get very far into a terminal diagnosis for realizing the levity of the situation.

Maybe consider a family intervention? Somebody’s got to talk some sense into him.

I think if I was in that position, I’d want to let that person know that I care about them and that I want what’s best for them.

The sad reality is that some people don’t want to get the care and I think we should be accepting of that also.

 

[GSPHUNTER]

I had a friend who needed bypass surgery. Dr. said surgery or death, your choice. He chose death. He had insurance, but he chose not to go through with what he said would have been a terrible operation. He was 82.

 

[Beendare]

My old business partner and best friend of 52 years had that degenerative liver disease Walter Peyton had. This is 30+ years ago when the TP success rate was only 5%.
He was active in his lifestyle and treatment and it postponed the need for a TP 8 years when the success went up to 80%. He got the transplant and lived another 23 years.

Point is; There are things he can do that will help drastically while he is on the list.

If he is still drinking or doing drugs….he has a snowballs chance of getting the transplant.

 

[sneaky]

You have to be completely sober for 6 months before they'll put you on the list. Clock restarts every time you drink. My boss's son just died from liver failure, he was 29. Canceled his insurance about a month before his friend took him to the doctor. He denied it til the very end. That's what they told him, you have to be sober or it won't ever happen. He never left the hospital.

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[Yoder]

I think if you are an alcoholic and need a liver transplant the only way you should get a liver is if nobody else needs it and they are going to throw it in the garbage.

 

[Predator_SD]

As an RN i’ve learned each of us handles their mortality differently. Believe it or not, not everyone has the need to prolong their lives beyond what nature intended. Some are completely at peace with letting nature takes its course.

I find it admirable tbh as most will endure surgery after surgery trying to delay the inevitable. Those that are peace with accepting they are going to die seem to have much better lives in their last years or months.

 

[WV Mountaineer]

I have a friend in the same situation. Getting on the list isn’t as easy as sone seem to suggest. My buddy has watched his diet for 6 years. Never drank expressively and hasn’t had alcohol in over 10 years. He’s done everything he was supposed to do and has done it for years. He just got out on the list last month.


Over the last two years he’s been on it and off it for various reasons due to not being strong enough to accept a transplant. That wasn’t his doing. But, he’s been yellow for a year and has spent 3/4 of the last year in the hospital.

In January. The doctors told him there was nothing else they could do. And suggested sending him home on hospice. His daughter and son wouldn’t take that answer and got him into Duke.

They ambulanced him there, he stayed for two days. He left on the list and is currently awaiting a call to get it as soon as a source is found. His only requirements is he had to stay close as it’s a time sensitive study.

My point is, unless you know for sure he’s the hold up, I wouldn’t say he’s at fault. And, unless he simply refuses to look at all his options, I’m willing to say it’s likely not his doing.


I could be wrong. But, 11 years ago the doctors at Wake Forest gave me a 20% chance to live. I decided to take the treatments. I lived. But, if they told me tomorrow I’d have to do it again, I truly don’t know if I would.

Sometimes, death isn’t the worst imaginable thing. And, until it’s really knocked on your door, it’s hard to understand that.

 

[Rich M]

A lot of folks don't understand how difficult it is to change your lifestyle. Some folks do wonderfully, they have the drive to do whatever it takes. Others like where they are at and feel no need to suffer anymore than they have to.

I'm at a point where I can see both sides.

Badgering someone about their health shows love and caring but is also something most folks would rather not hear. How's it feel when yer mother in law shows up and starts pushing supplements on you and telling you you don't look right???

OP didn't say it was booze/drug induced. Liver issues can be genetic and from other stuff than booze/drugs.

Some hospitals will do amazing stuff to help people - maybe that is available? I know a guy w stage 4 cancer who is getting $16K worth of medication and free visits from such a hospital.

 

[grfox92]

My MIL died of liver failure from alcoholism. They were very blunt. Because the failure was due to alcohol, she would be lowest priority to getting a transplant due to statistically going back to drinking after transplant. She was only 50 years old and wanted it badly. It was terrible for my wife and her brother. Wouldn't wish it on anyone.

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[Idaboy]

Chances are, he needs a liver due to his own doing.
If a lifestyle change hasn't happened already, it probably won't ever.
Not sure what the requirements there are for a transplant, but a lifestyle change, is probably near the top.

I would caution assuming his condition is his fault, before passing judgment. Most patients under age 40 have more than just lifestyle issue that contributed to liver failure.

 

[Mule3006Elk]

He's either given up due to financial situation or really doesn't know where to turn. He may have accepted end of life and is trying to carry on as normally as possible.

 

[Idaboy]

Agree with others that there are insurance options and also Medicaid options, but you have to really dig into the filing process to get it going. Most transplant centers have case managers to help patients navigate that process.

There can be a variety of issues in liver failure patients that lead to behavior charges. If his ammonia level is elevated he may seem foggy, run down or apathetic in his responses when this first sets in...if it is elevated, he needs to be on lactulose and rifaxamin to help normalize levels and you can see dramatic changes in personality if that is the issue

Depression is also common if a patient has been told they have a potentially terminal diagnosis.

 

[Rob5589]

In the end, all anyone can do is provide him with all the information and let him decide.

 

[Fatcamp]

Noncompliance is very common in people with chronic health conditions. Very.

The reasons are so numerous I wouldn't even begin to guess what's happening with the OPs situation.

Hope this person is able to find peace, whatever that looks like.