Wife needs 2nd liver transplant

[ChuckCorbisiero]

I know this seems personal but I need support from my fellow musicians. Well here it goes. My wife has auto-immune decease and required a liver transplant in 1997. All's been relatively well since then. Our 2 kids are off to College. She works full time. Looks great. Survived Breast cancer in 2005. Had a hip replacement in 2007. But 10 days ago she fell ill and was admitted to ICU at UCLA Hospital. They did a week long evaluation and brought in a shrink who was asking questions of her that were poised in a strange manner. Long story short. She has been denied a position on the National liver transplant waiting list partly based on her, "inability to take care of her liver." She had a falling out with her transplant coordinator and missed several appointments over the last 18 months and they say she's "a bad patient." One thing. As far as her mental status. She works for the Los Angeles County DMH (Department of Mental Health) as a referral specialist and program coordinator for DUI offenders. She's totally with it. My inclination is to fight like hell and try to change this so she gets on the list. Doesn't sound right. Any suggestions would be appreciated.

[PaulCannon]

That's horrifying! Get a good lawyer and make it happen.

Good luck.

[colcifer]

What he said! It'll be a lot of work getting through the bureaucracy but you have well wishes from all of us.

[bassteban]

Fight. I cannot even comment on the seriousness of this, just add my meager support/prayers/good vibes. Fight, I say.

[Jason Sypher]

I say fight, but fight smart. Get as much information as you can, and as much to support your side as humanly possible and organize it, and reorganize it until you've got it distilled down to it's very essence. You will need to get a lot of other psychologists opinions. You have a mark against you, the falling out with the coordinator and the sketchy attendance record. You will likely need to find ways to show that her work or some other good reason, made her attendance less than perfect etc. Think like a lawyer. Go on line and find others who were denied (wrongly would be best) and find out their stories. These days there is a great advantage to the amount of information available, use the web. Get active, not angy. And make a case for appeal. Remember, never ever under any circumstances lose your cool. And believe that in the end you will prevail. Best of luck to you and your wife.

[MR PC]

http://www.cpmc.org/advanced/liver/p...pics/MELD.html

And what Jason said.

[MakiSupaStar]

Oh man. If there's ever a time to stand up and fight it's now. I'm sending you positive vibes and I'm in your corner. Keep us posted.

[Shakin-Slim]

Yep, fight, just like they all said. Their conduct seems to be everything BUT what healthcare should be about.

[totallyfrozen]

Originally Posted by ChuckCorbisiero

...She has been denied a position on the National liver transplant waiting list partly based on her, "inability to take care of her liver." She had a falling out with her transplant coordinator and missed several appointments over the last 18 months and they say she's "a bad patient."...

Good lord, that's aweful! Who do these people think they are?!

[MR PC]

They are the people who organize the waiting list for the people who need an organ transplant. They have to make hard decisions based on the guidelines dictated in the link posted above. I don't know enough about the system to comment on any politics that could be involved in the eligibility guidelines. The bottom line must be that there are more people in need of transplants than there are suitable organ donations. Otherwise, why would there be a need for a waiting list?

A couple of my friends have had this problem. One, when confronted with possibility that they would be denied a liver transplant because, based on tests, it was determined he was still drinking and snorting dope, decided to conform with the system. He's still living and very happy 15 years later.

The other was in total denial about her alcohol and drug, and other lifestyle choices ( even her family didn't knew she was an addict) and when confronted with the possibility of being removed from the list, chose to stay in secrecy and denial. She was denied a transplant.

I don't know about your wife's situation with the powers that be Chuck, but again, what Jason said is very wise, and my prayers go to your family.

[My name is Mudd]

Originally Posted by MR PC

I don't know enough about the system to comment on any politics that could be involved in the eligibility guidelines.

Neither do I, but I'd hate to find out that something like politics figures into the selection process.

Best of luck in this! Keep us posed, please.

[LouisF]

They're at Cedars (another LA area hospital) but might be useful:

Online Liver Transplant Group Offers Support Regardless Of Health, Schedule Or Distance

Louis

[davidsbass]

"America"

[davidsbass]

i would gladly redirect my parents' tax money towards something like that instead of all the **** were doing in the middle east (and now Libya!). Too bad that stuff isnt up to me You've got my best of wishes!

[bottomzone]

I'll keep you and your wife in my prayers.


A Groove is a Terrible Thing to Waste!

[ChuckCorbisiero]

Thanks to all of you and your support. She was reevaluated this past week and was found to be compliant and was approved by the committee today for listing on UNOS for a double transplant-liver/kidney. I guess this forum is good for somethin'. I bent a lot of people's ears with this story and somebody listened. Thank you Lord.

[LouisF]

Glad to hear it.Good luck!

Louis

[Sam Sherry]

Bravo to you both.

I'd like to think that there are principals I would die for, but honestly, "I don't like the way you do your work at the liver-transplant program" is probably not one of them. It sounds like the cost of living is a little sucking-up to the people who run the program, and that sounds like a legitimate choice (not that you need me to say so).

Please accept my best hopes and wishes for many happy years of exploring the question.

[SBassman]

Originally Posted by davidsbass

i would gladly redirect my parents' tax money towards something like that instead of all the **** were doing in the middle east (and now Libya!). Too bad that stuff isnt up to me You've got my best of wishes!

Agreed.

Prayers for your wife, you, and family.

[J. Montgomery]

Thats great news that she was added to the list! Good luck