No liver for this man - really???

Just read about this and it just another piece of insanity that irks me:

http://www.commondreams.org/further/2011/11/22-0

"Cognitive Dissonance Dept: L.A.'s Cedars-Sinai Hospital is denying a liver transplant to a cancer patient because he used medical marijuana - legal in California and prescribed by his Cedars doctor - to ease the effects of  chemotherapy. Hospital officials say Norman Smith, 63, must stop using pot for six months, undergo random drug testing, and do weekly substance-abuse counseling before they will consider putting him back on the list. The medical marijuana advocacy group Americans for Safe Access says Cedars-Sinai should change its policy. It's tough to argue."

[HectorSF]

I remember a year or so ago a patient died for just the same reason.
This is another tragic affect of antiquated laws and thinking. If the person gets pain relief from marijuana is that so much "worst" then using an opiate? The suffering from cancer pain is known to be some of the worse pain a person can bare. I can only hope that I never have to be tested by it myself as I am no macho man or hero as some of friends and acquaintances I admire are. I can only be in awe of their tenacity and bravery and hope that if I have to face it I can be 1/100 the persons they are. I consider my extremely lucky to have no symptoms for my liver cancer so far. And I appreciate every painless day I have.

I am assuming the patient doesn't have a history of substances abuse. In that case I would agree that the patient must be compliant with abstinence rules for listing for liver transplant. AS a person with a history of substance abuse is less likely to take their daily meds for the rest of their life and take care of the gift of life they have received because of their self-destructive behavior. If this patient has 6 months of life to live then he can to be compliant and he should be able to still get a transplant as is the case for abuse of alcohol or any  other substance. I hope this is the case for Mr. Smith.

At the root of this is really the issue of their not being enough organ donors thus not enough organs for the people that need them. If more livers were available, the competition for who gets a transplant would not be as brutal as it is currently. This is a choice we all must make for ourselves. Do you choose to be buried with our organs or cremate them when can can save the lives of up to eight people who need organs to relieve their suffering and continue living. About 20 people die every day waiting for an organ that never comes in time. This is tragic especially because there is no need for there to be a shortage of organ if most of the good people did the right thing and gave the gift of life when theirs is over. It is a terrible amount of suffering for the patients as well as their loved ones. Yet we go about our lives thinking we are caring people when if we become donors we can literally give the gift of life to someone when we don't need the organs any longer. After we are dead why do we need lungs to breathe? A heart to beat? A liver to process our food? We don't. And all major religions support donation. Of course there are many many caring people who are donors and are making a difference. They are unsung heroes in my book. Every post transplant patient I have met is profoundly thankful to their donor and the donor's family. Many have photos of their donor in their wallet on on their cubical. It is a deeply felt relationship. For many donor families it is a way for their loved one to live on through another person.

Currently more than 110,000 men, women and children are awaiting organ transplants to save their lives. Thousands more are in need of tissue and cornea transplants to restore their mobility and sight. Register to be an organ, eye and tissue donor today and provide hope to those who wait.
For those interested in learning more about donation or to register in your state please follow the links below.

Learn more about being a donor...
http://donatelife.net/

Registry in your state...
http://donatelife.net/register-now/

Thanks folks!
Hector

[Susan_1a_CC]

Hector, you bring up such an important point about being an organ donor.  There's nothing to add other than I hope one or more of us will choose to be donors or let our next of kin know that we'd choose to do so if/when the time came.

As for you personally, I hope you never suffer ill effects from your diagnosis and wish a cure for you.

Susan  

[orphanedhawk]

Having has a live liver transplant, perhaps there is something more to add.
If more live liver transplants were done here in the US, there might not be a shortage of liver donors.
Personally, I think the insurance companies don't want to pay for two surgeries instead of one.

As for the topic at hand, in California I can buy legal medicinal marijuana.
To deny a liver based on this is hypocritical to say the least.
The sad truth is money has become the main value in our society.
If the value of compassion was placed over money, we would not see articles like this one.

[eureka254]

It happens more frequently than you think; many patients are denied ever being evaluated for TP because of known marijuana use.  As Hector points out, the provisions and guidelines within the transplantation system is for the most part driven by the shortage of organs. The lack of donors (living or cadaveric) has created a system whereby doctors have to make judgment, in the real sense of the word.  

The difficulty with petitioning for MJ clearance for TP patients at the current time is that not all states have legalized marijuana (medical or otherwise), so unlikely that the medical community would put cart before horse.

The TP system works by process of elimination before listing even begins; you have to meet 'standards' before candidacy will be considered: patients are evaluated psychologically, emotionally, physically, medically, and socially. Marijuana use is only one of many exclusionary criteria; because the medical community cannot currently provide livers to everyone who needs one, the guidelines are set so that the best candidates for survival after transplant get 'chosen' to be listed.  

The lack of 'compassion' and 'uniformity' in the TP system, though 'necessary', does leave people to die.  Many folks don't know that even having HCC (liver cancer) is not a guarantee of listing.  When my husband was diagnosed with recurrence, we learned that in other regions (FL, TN) he would have been put at the top of the list, but not so in all regions, and not so in ours. Some other regions would have 'chosen' to list my husband as a priority transplant, our particular region did not consider HCC a 'priority' for listing.

The TP listing process for liver is far from perfect, but the issues and contradictions and inequalities that currently exist will not go away unless MORE PEOPLE DONATE.

[rockymoe]

My youngest daughter asked if she could be a live donor for me I told her I wouldn't let her. If something happened to her I would wish it was ne and not her,
My mother was a organ donor she was 82 when she died and she had diabetes and Mac. They said her organs were too old, So she donated her tissue to be used for breast reconstruction after masectomies.
Can they use our organs?

[orphanedhawk]

Everyone has to do what feels best for them.

I feel like live liver transplantation has a bad reputation in the US, perhaps orchestrated by the insurance companies?

The hospital I went to in Taiwan does many live liver transplants.
They claim no donor mortalities and few complications.
If they can do it, there is no reason why we can't.

[eureka254]

You're post transplant treating with triple?

[belle19]

that's total b.s.  i can't believe this story.  sorry to read it and especially sorry for the man that was denied.  no words can express my feelings right now.  belle

[Susan_1a_CC]

I wish that there were a more informed way for doctors to make these types of decisions and maybe someday there will be.  I guess for now they are using primarily "physical" measurements and morality doesn't have much of a part in the decision.  For your husbands and many others sakes I do hope that more people donate their organs.  It's so sad that not everyone can get helped at this time...

[Susan_1a_CC]

I know how you feel - it is b.s. that following doctors orders gets one excluded from a chance to extend ones life.  

[Mary4now]

This is truly unbelievable,  marijuana?  I really don't understand how these antiquated restrictions still apply, it has to be about $$.  
Back to the drawing board folks,,,,  until we get it right. that being said until we can decide what's right and whats wrong.  
Mary

[orphanedhawk]

What makes this even more ridiculous, is it happened in California where doctors can write an evaluation for it. You then purchase a card, go into a dispensary and buy it.
My heptalogist said he doesn't mind me using it in moderation.

Life and death decisions are being made by corporate interests not by what is best for the patient or even by what is consider legal within the state.

[eureka254]

I truly don't believe it's about dollars, nor corporate interest, nor legalities.  All of those may play into the equation, but I don't believe the current UNOS guidelines could be changed by just eliminating those particular issues.  The bottom line is need outstrips demand, period. The allocation system has that as its worst enemy, and the guidelines have to deal with that as a reality.  It's not right or wrong, it just is what it is, and it's not about changing the system, it's about making the circumstances different so that the system can be changed.

Maybe I'm being naive in some people's eyes, but from where I stand, it wasn't insurance, or dollars, or sensemelia that was the excluding factor for my husband.  He had more than three tumors occur simultaneously, and though they were restricted to the liver and theoretically TP could have extended his life, the medical system currently has to exclude those who are statistically less likely to benefit in order to save the most lives with the limited number of livers that become available.  It wouldn't have mattered if this man had enough insurance, or enough to pay for the TP... UNOS guidelines have determined that he is higher "risk" than someone who doesn't use marijuana, so he is phased out of the equation.  Until the demand and need equation balance out more, the restrictions for liver transplantation will continue to foster inequities.  For all our outrage for how wrong it is, it's really just another case of suffering because of good intent in a less than perfect world ... if there were enough livers, exclusions like these wouldn't have to be made in order to save lives.

[orphanedhawk]

I do believe its about dollars.
Why aren't there more live liver transplants in the US?
Why can a surgeon and hospital in Taiwan do them so successfully but we can't do it here? ( BTW:The head surgeon, was trained in the US.)

Is it because Insurance companies don't want to pay for two surgeries instead of one?
My instincts, my experience says there are always more than one way to do anything. Cadaveric transplants are one option.
Live liver transplants are another.

[eureka254]

"Why can a surgeon and hospital in Taiwan do them so successfully but we can't do it here?"
---------------------
Excellent question, OH, but my gut tells me the difference between there and the US is still also due to "shortage." The combination of the frequency of need (much higher in percentage of population than the US), general acceptance of hbv/hcv  there, as well as the cultural dictates of filial sacrifice as part of their culture have made living transplantation almost an automatic option.  The hope is that as the need escalates in this country, more loved ones will step up to the plate for their dying relatives.

Your personal experience may have convinced you it's all about dollars, and I'd be interested in understanding why that is if you'd like to share more.  I would love a wider perspective, and I am sure you ran into challenges I do not know about in your journey.  Personally, I think it's also cultural differences:  whereas in Taiwan death rates from liver disease are extraordinarily high, in the US we're just starting to deal with the end-stage fallout of hep; nuclear families here in the US are by far smaller as a rule; culturally we encourage independence and freedom of choice as opposed to duty and responsibility; and the predominance of O blood type in the US as opposed to O in the minority also greatly impacts match rates.  Your daughter and you have a very special bond, but I do believe your daughter's tremendous courage and your loving acceptance and faith is something we need more of in this country as increasing numbers of baby-boomers face the challenges of ESLD.

[eureka254]

As an aside, most Taiwanese in the general population are familiar with liver disease and know that it's possible to donate body parts.  In this country, most people don't even know that you can donate a liver and that it rejuvenates... education and acceptance of a better solution is the key, imho.

[orphanedhawk]

Certainly you make a good point about cultural differences.
In Taiwan all transplants, including cadaveric ones, must be from blood relatives and relatives have to give permission.
I thought it had to do with ancestor worship but that's just my guess.

There are multiple reasons I believe the lack of live liver transplants in the US are money related. The obvious thing is, surgery isn't cheap and two are more than one.

It doesn't take much to see how much control the Insurance Industry has over the medical establishment in the U.S.
Health decisions are being made by insurance people, not medical people.
Look at the people here on this forum who were initially denied treatment by insurance.

I have no proof of any of this. It's just my opinion:)

[eureka254]

I did not know that permission was required from relatives, but that does not surprise me.  Ancestor worship certainly is part of that, but I think the system there speaks more to the function of "family" than "worship" in a cultural sense.  Here in the US, most citizens would be appalled at other family members dictating the right/need to donate or not; in a country where honor and duty to family is more highly valued than life itself, the permission of family may very well usurp the judgments of individual family members and of doctors.

There's no question both insurance and cost is part of the problem within the current US healthcare system; however, it's also a consumer driven system and the responsibility of end cost is as much a result of the consumer as the provider.  Though without a doubt many folks encounter unnecessary hurdles in pursuing good care, there are equal amounts of people who over-test and over-use private insurance coverage for unnecessary screening and consequently it spirals the cost of private healthcare even further.  Potentially political, so I won't soapbox at length about that one :).

So far that I've seen, if you are insured in this country, publicly or privately insured, I believe a transplant would be covered regardless of whether it was cadaveric or living.  

Neither one of us has proof, but it certainly is nice to share opinions and discussion :).  Gosh, if we agreed on everything, wouldn't that be boring!
~eureka