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Tue Jun 19, 2012, 06:16 AM

Sick: LA Hospital Denies Life-Saving Organ Transplant to Medical Pot User (Again)

http://www.alternet.org/drugs/155894/sick%3A_la_hospital_denies_life-saving_organ_transplant_to_medical_pot_user_%28again%29/

Cedars-Sinai Hospital in Los Angeles has for the second time in the past year denied a life-saving organ transplant to a patient because of her medical marijuana use, Americans for Safe Access reported this week. The hospital removed qualified medical marijuana patient Toni Trujillo from its kidney transplant list earlier this year, citing her medical marijuana use.

Trujillo has had kidney problems most of her life and has been on dialysis for the past five years, since an earlier transplanted kidney began failing. She came to California from Pennsylvania two years ago to take advantage of specialized treatment offered at Cedars-Sinai. She explained that to her physician at Cedars that she used medical marijuana as an appetite stimulant to increase her protein levels -- a critical need for dialysis patients -- and got no negative feedback.

She continued to use medical marijuana while awaiting her transplant. Then, in April, after being on a waiting list for six years, Trujillo was told over the phone that she had been de-listed because her medical marijuana use was considered "substance abuse." She was never sent a formal de-listing letter, confirming her status.

"Denying necessary transplants to medical marijuana patients is the worst kind of discrimination," said ASA Chief Counsel Joe Elford, who authored a letter to Cedars-Sinai urging the hospital to reconsider. "Cedars-Sinai would not be breaking any laws, federal or otherwise, by granting Toni Trujillo a kidney transplant, and it's certainly the ethical thing to do."

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Reply Sick: LA Hospital Denies Life-Saving Organ Transplant to Medical Pot User (Again) (Original post)
xchrom Jun 2012 OP
pipoman Jun 2012 #1
ryan_cats Jun 2012 #60
DLevine Jun 2012 #2
GeorgeGist Jun 2012 #3
SammyWinstonJack Jun 2012 #53
MannyGoldstein Jun 2012 #4
HotRodTuna Jun 2012 #5
JackInGreen Jun 2012 #6
HotRodTuna Jun 2012 #11
sulphurdunn Jun 2012 #7
Robb Jun 2012 #9
nashville_brook Jun 2012 #46
HotRodTuna Jun 2012 #10
Gormy Cuss Jun 2012 #12
HotRodTuna Jun 2012 #13
Gormy Cuss Jun 2012 #15
HotRodTuna Jun 2012 #25
Ms. Toad Jun 2012 #28
HotRodTuna Jun 2012 #44
riderinthestorm Jun 2012 #45
LineLineLineLineLineLineLineLineLineLineReply .
Ms. Toad Jun 2012 #50
Ms. Toad Jun 2012 #14
Gormy Cuss Jun 2012 #17
Ms. Toad Jun 2012 #20
riderinthestorm Jun 2012 #31
Ms. Toad Jun 2012 #36
riderinthestorm Jun 2012 #21
Ms. Toad Jun 2012 #24
Ms. Toad Jun 2012 #23
riderinthestorm Jun 2012 #26
Gormy Cuss Jun 2012 #40
Ms. Toad Jun 2012 #41
MightyOkie Jun 2012 #16
clang1 Jun 2012 #64
Romulox Jun 2012 #96
spanone Jun 2012 #8
phleshdef Jun 2012 #27
nashville_brook Jun 2012 #47
Romulox Jun 2012 #29
riderinthestorm Jun 2012 #18
Freddie Stubbs Jun 2012 #19
riderinthestorm Jun 2012 #22
Romulox Jun 2012 #30
randome Jun 2012 #32
Romulox Jun 2012 #37
nashville_brook Jun 2012 #48
riderinthestorm Jun 2012 #33
Romulox Jun 2012 #38
riderinthestorm Jun 2012 #42
Romulox Jun 2012 #52
riderinthestorm Jun 2012 #55
Romulox Jun 2012 #57
riderinthestorm Jun 2012 #59
Romulox Jun 2012 #63
riderinthestorm Jun 2012 #66
Romulox Jun 2012 #68
riderinthestorm Jun 2012 #70
Romulox Jun 2012 #71
riderinthestorm Jun 2012 #74
Romulox Jun 2012 #79
Ms. Toad Jun 2012 #35
dembotoz Jun 2012 #34
Romulox Jun 2012 #39
Ms. Toad Jun 2012 #43
Romulox Jun 2012 #54
riderinthestorm Jun 2012 #56
Romulox Jun 2012 #58
riderinthestorm Jun 2012 #61
Romulox Jun 2012 #62
riderinthestorm Jun 2012 #67
Romulox Jun 2012 #69
riderinthestorm Jun 2012 #72
Romulox Jun 2012 #73
riderinthestorm Jun 2012 #75
Romulox Jun 2012 #76
riderinthestorm Jun 2012 #81
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riderinthestorm Jun 2012 #99
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riderinthestorm Jun 2012 #82
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riderinthestorm Jun 2012 #88
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riderinthestorm Jun 2012 #98
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riderinthestorm Jun 2012 #90
Ms. Toad Jun 2012 #93
Romulox Jun 2012 #94
Ms. Toad Jun 2012 #100
nashville_brook Jun 2012 #49
Robb Jun 2012 #51
clang1 Jun 2012 #65
riderinthestorm Jun 2012 #80
Rex Jun 2012 #78
riderinthestorm Jun 2012 #83
Rex Jun 2012 #85
riderinthestorm Jun 2012 #86
Rex Jun 2012 #87
riderinthestorm Jun 2012 #91
Rex Jun 2012 #92

Response to xchrom (Original post)

Tue Jun 19, 2012, 06:55 AM

1. But they have all taken the hypocritical oath..er..

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Response to pipoman (Reply #1)

Fri Jun 22, 2012, 12:47 PM

60. wtf?

WTF? Do they take cigarette smokers off of the roles? Pot is on of most most benign substances around, they have no right to bump her off the list.

Do they accept donor parts from donors who smoked pot? They hand this woman a death sentence for taking something that grows as a weed all over the US?

It seems she was taking it to reduce the symptoms of her terrible disease. Would they do this to a 1%er? Dick Cheny got a new heart, how many drugs was he on?

So, the compassionate grand old party are accessories for this person's death? What if a Bush needed the kidney, I'm sure they'd stick to the rules...NOT!

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Response to xchrom (Original post)

Tue Jun 19, 2012, 06:56 AM

2. Shameful. n/t

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Response to xchrom (Original post)

Tue Jun 19, 2012, 08:07 AM

3. She should change her name ...

to Mickey Mantle or David Cosby.

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Response to GeorgeGist (Reply #3)

Thu Jun 21, 2012, 04:50 PM

53. ...

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Response to xchrom (Original post)

Tue Jun 19, 2012, 08:08 AM

4. Savage and sick nt

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Response to xchrom (Original post)

Tue Jun 19, 2012, 08:13 AM

5. She knew the rules

 

You don't get a kidney transplant of your a drug or alcohol user/abuser. If you want the kidney, follow the rules.

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Response to HotRodTuna (Reply #5)

Tue Jun 19, 2012, 08:25 AM

6. Your hearts as big as all of space

and about as full as lunas atmosphere.

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Response to JackInGreen (Reply #6)

Tue Jun 19, 2012, 09:33 AM

11. Please

 

Of course I'd love for her to have gotten the transplant; but there's a long list of people that need them, and if she isn't willing to follow the rules (Mickey Mantle anyone?), then she shouldn't get one.

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Response to HotRodTuna (Reply #5)

Tue Jun 19, 2012, 08:46 AM

7. Let me see.

A woman is prescribed medical marijuana by her physician in a state where that is legal. She is then denied a medical procedure by a hospital in that same state over her prescribed use of that legal substance, having never been informed prior to that time that she would be denied the operation due to her use of the legally prescribed marijuana. Some rules.

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Response to sulphurdunn (Reply #7)

Tue Jun 19, 2012, 08:53 AM

9. At some point she must've signed a contract.

Typically a substance abuse contract is part of getting on the list, yes? How explicit was the document she signed, I wonder?

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Response to Robb (Reply #9)

Tue Jun 19, 2012, 07:29 PM

46. MMJ prescribed by a doctor is no more substance abuse than hydrocodone prescribed by a doctor

you can't prove "abuse" by a producing a script.

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Response to sulphurdunn (Reply #7)

Tue Jun 19, 2012, 09:31 AM

10. Yes, exactly

 

Debating the merits of medical marijuana is one thing. I can guarantee you that if you're on the list for a kidney transplant you have to agree to, and likely prove, that you are drug and alcohol free for something like a year. If she told her doctors that she was using and they never told her to stop, that's another story but that wasn't mentioned.

Just because marijuana is legal in a state, like alcohol is, does not mean you can ignore the medical requirements your doctor/hospital has instructed you to follow. These rules are in place so chronic alcoholics can't burn through their kidneys, then get a reset on a new one and go back to the party. I have no problem with this; precious organs should go to people who care enough to follow the rules.

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Response to HotRodTuna (Reply #10)

Tue Jun 19, 2012, 09:43 AM

12. Did you read the link? The description of the other patient's experience is more clear.

Trujillo's plight echoes that of Norman Smith, a medical marijuana patient who was diagnosed with inoperable liver cancer in 2009. Smith's oncologist at Cedars-Sinai, Dr. Steven Miles, approved of his medical marijuana use as a means to deal with the effects of chemotherapy, but Smith was removed from the liver transplant list in 2011 because of medical marijuana, just two months before he would have been eligible.


His oncologist at the same institution approved of the use. That shows how absurd the transplant program's interpretation of this usage is.

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Response to Gormy Cuss (Reply #12)

Tue Jun 19, 2012, 10:34 AM

13. Well, that's obviously an area they're going to have to work out

 

They'll probably say something like the doctor doesn't have the authority to override their standards. Regardless, if you're waiting for a transplant and they say don't use marijuana, medical or not, you're better off not. Complain all you want, but those are the rules in place and you have to deal with them.

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Response to HotRodTuna (Reply #13)

Tue Jun 19, 2012, 11:28 AM

15. And it's good to bring these arbitrary rules into the daylight.

It's really absurd that a transplant program can't see past the word marijuana. If the patient's appetite improves through the medically supervised use of it then presumably the patient is not as weak as many coming out of chemo. One would think that the transplant team would see that as a benefit.

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Response to Gormy Cuss (Reply #15)

Tue Jun 19, 2012, 01:56 PM

25. I agree with that, it's hard to argue that marijuana is worse than chemo drugs

 

Maybe things will change in the future.

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Response to HotRodTuna (Reply #25)

Tue Jun 19, 2012, 02:16 PM

28. Unless you are a transplant physician, or are otherwise qualified

to evaluate drug interactions (and know the regimen the patient will be on), I don't believe you can make that assessment.

As noted below, licorice is (or can be - I don't know that it is on all lists) prohibited while on the liver wait list because of its impact on the liver. I had forgotten that since it is not something my daughter eats anyway.

The body is designed to attack and destroy foreign objects. With the liver (and at least some other organs), both the body and the liver try to attack foreign objects. For the body, that is the new liver. For the liver that is the new body. Keeping the body, or the new liver, from doing the job they are designed to do in order to keep us well is extremely difficult and requires a small pharmacy of drugs - each of which interacts with other drugs (including over the counter) and - basically - anything you consume.

I don't know whether there are drug interactions that keep marijuana on the prohibited list - but I do know that l am not qualified to assess the interactions of marijuana with the pharmacy of drugs that will need to be started without notice, or time to clear the system of any drugs that would interact.

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Response to Ms. Toad (Reply #28)

Tue Jun 19, 2012, 06:08 PM

44. Believe me, I agree with you

 

I just feel the occasional need to agree on some level with the reactionaries around here so you don't get immediately banned for lack of liberal fealty.

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Response to HotRodTuna (Reply #44)

Tue Jun 19, 2012, 07:21 PM

45. LOL! Welcome to DU Hot Rod! nt

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Response to HotRodTuna (Reply #44)

Tue Jun 19, 2012, 08:16 PM

50. .

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Response to Gormy Cuss (Reply #12)

Tue Jun 19, 2012, 10:58 AM

14. Without debating the use of medical marijuana

Managing care post transplant is very tricky and it is critical for the success of the transplant that the patient be medically compliant. It is well known, at least among populations heading into transplant (and my daughter is a few years away) that you must follow the transplant doctor's rules as part of demonstrating that you have the capability to be medically compliant so that the organ (of which there are not enough to go around) will not be wasted on you because of failure to be medically compliant.

In the second case you cited, there are likely two problems:
1. The transplant rules almost certainly prohibited the use of marijuana (I am not aware of any that permit it)
2. The patient probably didn't inform her transplant doctor of the drugs being authorized by the other physician (which may or may not have made it into the drug use portion of the medical record - if it was easily accessible). It is the patient's responsibility to provide complete and accurate information (or verify what is in the record) to each physician - and because of the drug interactions and the risk of drug interactions that might result in organ rejection, it is especially important that the transplant physician be fully informed of all drugs, prescription or otherwise, which are being taken.

If there are medical reasons for not following the transplant physician's orders, you have to work with him or her to obtain consent to vary from the protocol. This is not impossible. My daughter is on a medication he initially refused to prescribe. We built our case, and he agreed to prescribe it. It is a medication we could have just had another physician prescribe to get around his restriction, but we know (as anyone should heading into a transplant) that doing so would risk being able to obtain a transplant because we were not compliant with her transplant physicians orders (and she is not yet at the point of being listed - but we would never risk that because that non-compliant record might put her ability to live in jeopardy).

It may sound harsh, but there are currently about 17,000 people waiting for livers and only around 6000 a year available. Transplant physicians have a limited ability to judge who will best be able to care for the liver. They must make life and death decisions as to who is eligible to receive them, so they use all the tools available to assess the intangible pieces like ability to care for the liver post transplant. When there aren't enough to go around, giving a liver to someone who is unable or unwilling to be medically compliant is not a good decision.

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Response to Ms. Toad (Reply #14)

Tue Jun 19, 2012, 11:56 AM

17. I understand that transplant teams work hard at limiting the donors to the most compliant

but Cedars-Sinai may have failed that patient several ways:
1) the oncologist should have been aware of the transplant program rules
2) the transplant doctor should be able to share data and *shudder* actually consult with other physicians managing the patient before making a decision to remove the patient from the list.
3) the transplant program rules should explicitly discuss medical marijuana since there are states like CA where it has become normalized.

I realize that there is an acute shortage of donor organs and there is something to be said for steering clear of patients who won't or can't comply with the post transplant care but limiting the eligibility needs to be done on a consistent and scientific basis.

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Response to Gormy Cuss (Reply #17)

Tue Jun 19, 2012, 12:37 PM

20. Allocation is done on a completely neutral basis

Almost entirely according to the MELD score (lab number + weighted for current dialysis patients) with some weighting for regional location.

Unfortunately, there are no scientifically valid means of determining out of all the people eligible based on their MELD score, which ones will be able to care for the organ after donation. That is the reason less objective - but closely related - criteria is used to sort that out just to get in the door to be on the list (or remove you from the list).

A patient who is caring for a liver post transplant cannot, ever, count on others to tend for her care. She will always have to be careful about drug interactions, making sure every physician knows what medications she is taking, and so on. Even before transplant, for my daughter, that means when her gynecologist prescribes flagyl for a yeast infection she cannot rely on her gynecologist's assessment about whether flagyl is safe, she must also consult her hepatologist to make sure he approves. And she is not even listed yet.

The patient is the person in connection with all pieces of the system, who has access to all of the information. She is the one responsible for communication and she needs to demonstrate that she can make sure, for example, that any future oncologist who may - or may not be part of the same system - knows all of the relevant medical information. Including restrictions of any separate medical treatment like a transplant.

If the patient cannot understand and communicate clearly with every doctor caring for her and follow the rules of the transplant program in advance, when she is near death and she more tangibly understands her life depends on it, it is less likely that she will be able or committed to do so when life is once again good. That is just reality, and unfortunately there is no objective or scientific way to sort that out - even though the ability to communicate among physicians and to follow the rules of the transplant program are not direct indicators of post transplant care, but they are very closely related and are about the best that is available.

As for medical marijuana - that is where the patient needs to advocate for a personal exception. By doing that, she demonstrates her ability to be medically compliant - buy communicating her needs clearly, by working with the system to design a plan suited for her needs, and by ultimately following her doctor's orders (even if that means foregoing medical marijuana if she is unable to obtain an exception).

My daughter has a liver disease that is completely unrelated to alcohol - and is patchy (meaning she has healthy portions of her liver intermingled with unhealthy - and the healthy portions are no more susceptible to injury by alcohol than any normal liver would be. Her transplant physician has told her, for now, that she shouldn't drink alcohol - but that realistically she is in college and his expectation is only that she will drink it sparingly. About half of the physicians treating this disease permit a few alcoholic drinks a week. Regardless of his current position, that will change once she is listed. At that point, she will have to comply with rules even though they may be medically inappropriate for her as part of demonstrating that she ought to be eligible to receive one of the organs which are in limited supply.

For the record, she doesn't drink. At all. I'm just sharing that as an example of other similar restrictions that have nothing to do with the legal or illegal status of the material being consumed, or the medical impact of using it, but which would bounce her off the list if she violated the rules.

It is always very helpful when my daughter's doctors communicate well with each other - particularly those in the same medical system - but the reality is that rarely happens and ultimately we are responsible for making sure there is no mix-up, just as she will be post transplant.

I am far more concerned about economic disparity in becoming eligible for the list than I am about disqualification based on things under the recipient's control. Many individuals cannot demonstrate that they have the economic means to care for the organ post transplant (anti-rejection drugs are not cheap), and are ineligible for that reason - and that seems to me much more unfair.

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Response to Ms. Toad (Reply #20)

Tue Jun 19, 2012, 02:26 PM

31. Great post. I would second your concerns about the finances

My sister and I had to have a long consult with a financial expert who advised the transplant team to ensure all of her expenses would be covered. She had to provide financial records, bank statements, medical insurance cards, POAs etc. All of it upfront and if you can't cover any part of it, you will not be accepted onto the list.

its more than just the anti-rejection drugs cost-wise. A transplant recipient must stay within walking distance to the hospital and the transplant team until her bloodwork is stable. In my sister's case that meant renting an apartment in San Francisco near CPMC, a very expensive neighborhood, for two months. She was allowed to go back to her hometown after that (3 hours away) but had to have the financial ability to get back to San Francisco every week for the next 2 months staying overnight in a hotel. So even if you have adequate health insurance to cover the medical costs, you need $15 - 20k in a savings account as well.

A personal note to you Ms Toad: your daughter is very wise to stay away from alcohol even now. My sister had to have been alcohol free for the entire year previous BEFORE she would be considered for the transplant list. Like your daughter she also was not a drinker so she got on the list much faster because she wasn't waiting out that year. My sister contracted Hep C as an RN student so her liver was already compromised for most of her life (and was a big reason why she didn't drink). She then coded during a colonoscopy which destroyed her liver AND kidneys. So the "final" destroyer can sometimes take place very rapidly and unexpectedly. Best of luck to you and your daughter...

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Response to riderinthestorm (Reply #31)

Tue Jun 19, 2012, 02:49 PM

36. That is actually very low for savings -

Friends (with this disease I have around a dozen friends who have been transplanted), have had to have more than $100,000 just to demonstrate they could pay for the anti-rejection regimen afterward. And the live-away from home - one friend is going on a year living away from "home" in order to be close enough to the transplant center for when the call comes.

Small world. I have a SIL who contracted Hep C as an RN. Careless docs left a needle from an infected patient in the bedsheets - and then the facility told her (and treated her for) Hep A. She found out about 20 years after the fact, when she had significant cirrhosis of the liver, that it was Hep C. Of course, we can't talk about that because of the settlement

Fortunately, she is doing well - and my daughter inherited a great hepatologist since her aunt had already scoped them out by the time of my daughter's diagnosis.

My daughter's progression is likely to be slow. It is the nature of the disease - and I'm sure you know well what that means about her quality of life until she is finally sick enough that living with someone else's liver is less risky than continuing to life with her own. Not to mention her current medical costs of around $45,000 a year until that time that someone has to cover...sitting on pins and needles until the Supreme Court decision.

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Response to Gormy Cuss (Reply #17)

Tue Jun 19, 2012, 12:39 PM

21. Perhaps I can answer some of this....

1. There are other ways to stimulate appetite than marijuana. I'm going to guess Toni Trujillo was given several options and chose the mj. I don't know that but I do know that there are other ways to stimulate appetite without mj. Regardless, Ms Trujillo signed papers - a lot of them that were explicit from her transplant team that she was not to take any drug/food/medicine or herbal supplement without checking every substance with them first. Even candy is checked against their chemical lists to check for toxicity and chemical reactions. EVERYTHING is checked when you go on the transplant list.

2. The transplant team were now her primary physicians as soon as she went on the list. Her oncologist would have been secondary (weirdly enough). Ms Trujillo knew that explicitly as well - that the transplant docs were now her #1 docs and have exclusive control over managing the patient's care. It just has to be that way since the body chemistry required for the transplant to succeed to staggering. The pharmacy on a transplant is breathtaking. Nothing, not even one Twizzler is allowed to go without being checked. The dietician goes over ALL of your food choices and if you deviate you can be thrown off for having Twizzlers (I kid you not. Licorice is strictly forbidden).

3. The transplant rules in CA explicitly forbid mj, alcohol and tobacco. Its in the protocols numerous times and you have to initial that part at least 5 times. Not only that it's reiterated verbally multiple times.

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Response to riderinthestorm (Reply #21)

Tue Jun 19, 2012, 01:09 PM

24. Thanks for the addition

Having not been through the listing process yet, I can't speak authoritatively to what is in the orientation and contract portion of it.

What I do know from having spoken more generally with a number of transplant physicians and recipients and (ironically) being in the middle of editing an article on living donor transplantation, is the theory behind the strict adherence to rules even when there may be no medical prohibition.

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Response to Gormy Cuss (Reply #17)

Tue Jun 19, 2012, 01:04 PM

23. There are major inaccuracies in the article

"It appears Trujillo and Smith may eventually be put back on the list, but at the bottom."

All organ allocation of livers is based on the MELD score, with a bump up for being on dialysis, and with local and regional distribution, and organ compatibility taken into account. The MELD score predicts who is most likely to die within 3 months. If Smith has a high meld score, he will be at the top on the list at the moment he is placed back on the list . Time on the waiting list has played no role since UNOS switched from using the Child-Turcotte-Pugh score in 2002 (where time on the waiting list and admission to the ICU both played roles which could be gamed by clever physicians). So once back on the list there is absolutely no impact to having been removed from the list.

The reporter may well have been doing the best job he could, in a complex area, but since he fundamentally misstated the impact of having been removed and then returned to the list, I would be cautious about taking anything else reported on at face value.

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Response to Ms. Toad (Reply #23)

Tue Jun 19, 2012, 02:00 PM

26. +1. nt

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Response to Ms. Toad (Reply #23)

Tue Jun 19, 2012, 04:35 PM

40. Thanks

to you and riderinthestorm for sharing your knowledge of the process.

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Response to Gormy Cuss (Reply #40)

Tue Jun 19, 2012, 04:47 PM

41. I have a vested interest in getting good information out there

which reminds me I need to incorporate a donor bug in my sig line I had one as my avatar on DU2...

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Response to HotRodTuna (Reply #10)

Tue Jun 19, 2012, 11:36 AM

16. Well said. nt

 

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Response to HotRodTuna (Reply #10)

Fri Jun 22, 2012, 02:07 PM

64. Whats chronic alcoholism got to do with POT ? nm n/t

 

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Response to clang1 (Reply #64)

Fri Jun 22, 2012, 05:23 PM

96. These people SUPPORT the War on Drugs. All these cutesy excuses are made up after-the-fact. nt

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Response to HotRodTuna (Reply #5)

Tue Jun 19, 2012, 08:53 AM

8. medical marijuana is not drug abuse....

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Response to HotRodTuna (Reply #5)

Tue Jun 19, 2012, 02:02 PM

27. I'm glad you approve of a system that pretends medical marijuana is an excuse to murder people.

People like you have no moral compass.

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Response to phleshdef (Reply #27)

Tue Jun 19, 2012, 07:31 PM

47. +10000000000

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Response to HotRodTuna (Reply #5)

Tue Jun 19, 2012, 02:21 PM

29. Disgusting. nt

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Response to xchrom (Original post)

Tue Jun 19, 2012, 12:16 PM

18. My sister just got a kidney/liver double transplant in February. As the major member of her family

"support team" I went to all of her pre-transplant visits, exams, counseling sessions etc. so I'm well aware of the rules and regulations.

1. When you are listed for a transplant, your transplant team becomes your #1 physician team. Nobody else matters. Nothing else can be prescribed or administered without their permission and you sign paperwork to that effect. This is to ensure you are medically compliant AND to ensure your body is as chemically balanced as can be before the surgery since balancing the rejection issues and post-surgical trauma chemistry is incredibly complicated. The patient's bloodwork is often tested 2x/day for the first couple of months as they fiddle with it. Even food intake is highly scrutinized and the dietician is a critical member of the transplant team - so critical that the dietician alone can get a patient thrown out of the program if they aren't compliant.

2. Toni Trujillo signed many, many papers that advised her of all of this I assure you. Not only that but the transplant team social worker goes over the agreement line by line verbally, ad nauseum so there's no mistake. The "support team" family members are also given strict instructions on these protocols. If she went outside the transplant team to get a medical marijuana rx she was already not following one of the main directives which is to run every single thing through team.

3. There isn't a transplant team on the face of the planet that will allow marijuana (or alcohol or tobacco). My sister's transplant was done in San Francisco but we looked into having it done in Chicago since most of us live here. The protocols were the same.

4. There are other substances like prednisone that are administered to ramp up an appetite. My sister had severe nausea from the anti-rejection drugs and there are other things that can be prescribed to assist.

Organs are a precious, rare commodity. Complying with the transplant team's directives is an easy way to screen out those who aren't 110% committed to doing everything necessary to facilitate success.

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Response to xchrom (Original post)

Tue Jun 19, 2012, 12:21 PM

19. Could the hospital face a penalty if they went ahead with the transplant?

The article was not clear if this was some type of federal regulation, or just the policy at this hospital.

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Response to Freddie Stubbs (Reply #19)

Tue Jun 19, 2012, 12:42 PM

22. Yes. The national governing agencies that regulate organ donation could create problems

for that hospital. The protocols for transplant are fairly uniform throughout the US with very little deviation.

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Response to riderinthestorm (Reply #22)

Tue Jun 19, 2012, 02:23 PM

30. LOL. There's a perfectly *rational* explanation for all of this, people. She *signed a contract*!


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Response to Romulox (Reply #30)

Tue Jun 19, 2012, 02:30 PM

32. How about ingesting smoke on a regular basis weakens your imimune system?

I'm not qualified to know that's the main issue but I would hazard a guess that it is.

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Response to randome (Reply #32)

Tue Jun 19, 2012, 04:07 PM

37. SCIENCE, randome--not your musings... nt

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Response to randome (Reply #32)

Tue Jun 19, 2012, 07:33 PM

48. MMJ is edible, and vapable. Smoking not required.

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Response to Romulox (Reply #30)

Tue Jun 19, 2012, 02:34 PM

33. Not sure why that's vomit inducing.

Organs are rare and precious. The transplant teams want every single transplant to be successful. If you can't be compliant, in writing, and in reality, then they won't take you.

I presume the contracts with the hospital transplant teams are necessary because there have been those who've cheated.

And you can't cheat. The anti-rejection drugs and other meds for maximum success are too complex. The post-transplant pharmaceutical list is staggering. If you bothered to read any of the above posts, even some innocuous items like candy can destroy the organs.

Did you read that? Even candy can be problematic. This isn't any kind of a judgement about mj. Its about the transplant and maximizing transplant success. If you're a cheater, you won't be successful so why the hell should they WASTE a kidney/liver/heart or whatever on someone who won't follow the med protocol?

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Response to riderinthestorm (Reply #33)

Tue Jun 19, 2012, 04:07 PM

38. Right--all of this is -incidental- to your previous support of the Drug War.

Right. Quite slick.

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Response to Romulox (Reply #38)

Tue Jun 19, 2012, 05:09 PM

42. I don't support the Drug War, not in any way shape or form. Never have, never will.

I fully support decriminalization and you won't find a single post on DU where I support the Drug War, ever.

That's a lie.

This thread is about transplants, not mj, no matter how much you or anyone else want to co-opt it and make it about that

Edited to add the link from earlier this year about my sister...

http://www.democraticunderground.com/101844528

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Response to riderinthestorm (Reply #42)

Thu Jun 21, 2012, 04:45 PM

52. Right. All that business about your confusion regarding Vicodin's "similarity" to pot?

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Response to Romulox (Reply #52)

Fri Jun 22, 2012, 10:10 AM

55. It was an analogy, nothing more. Your blatant lying about my positions is duly noted.

I am not an advocate of anything. I simply have a 15 year old with a severe substance abuse problem (whereby I have been immersed in substance abuse group and individual counseling through the rehab facility) and a husband in remission from lymphoma (so I have many friends and acquaintances who use medical mj for relief).

I will state it again, I am not a supporter of the Drug War. Its a grotesque waste of resources and should be stopped immediately.

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Response to riderinthestorm (Reply #55)

Fri Jun 22, 2012, 12:35 PM

57. "Analogy" isn't a fancy way of saying "false". What you said was objectively *false*. nt

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Response to Romulox (Reply #57)

Fri Jun 22, 2012, 12:45 PM

59. Demonstrably patently untrue. I absolutely have never said pot is addictive. Ever.

It was an analogy only. But please proceed to kick the thread. Its got important info and I'm happy you're helping.

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Response to riderinthestorm (Reply #59)

Fri Jun 22, 2012, 01:44 PM

63. You use the word "analogy" like it means "mulligan". You were wrong, and contrive excuses instead

of owning it. It's not convincing.

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Response to Romulox (Reply #63)

Fri Jun 22, 2012, 02:15 PM

66. LOL! Kick!

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Response to riderinthestorm (Reply #66)

Fri Jun 22, 2012, 02:19 PM

68. Yes. Kicking the story of letting this woman die somehow helps you...

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Response to Romulox (Reply #68)

Fri Jun 22, 2012, 02:37 PM

70. She's been on the list for 6 years, on dialysis for 5 years. I'm pretty sure she's not in danger

of imminent death. Regardless, she simply has to use alternative appetite stimulants instead of pot and she goes right back on. Most likely in the exact same spot since her place is determined by her MELD score and not time (but of course you would have known that if you'd read any of the preceding posts).

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Response to riderinthestorm (Reply #70)

Fri Jun 22, 2012, 02:38 PM

71. The "expert" rears her head again! But this time, she's serving a heaping dose of "compassion". nt

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Response to Romulox (Reply #71)

Fri Jun 22, 2012, 02:46 PM

74. Its in the OP, you too can be as much of an expert on this woman's case as me. Just read it.

Compassionate people would advise her to use a different appetite stimulant and get back on the list.

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Response to riderinthestorm (Reply #74)

Fri Jun 22, 2012, 02:53 PM

79. Disgusting. nt

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Response to Freddie Stubbs (Reply #19)

Tue Jun 19, 2012, 02:37 PM

35. You have to be listed in order to receive an organ to transplant.

Organs are allocated through a national network (UNOS) and rules, with some priority to local or regional need. Listing is the process of becoming eligible to receive a liver. Even individuals who are using a live donor must still be listed. Neither of the individuals is currently listed so there would not be an organ available to transplant.

The first step is to become listed again (apparently after a mandatory 6 month ban - which, incidentally, is the same dry period typically required for alcoholics who require a liver transplant because alcohol has destroyed their own). I did not see a prohibition in the OPTN rules based on marijuana use - so I don't know whether there is a firm listing barrier. If you want to explore on your own, the rules are here

Once listed (again) they will be eligible immediately for an organ, based on their need. With livers, it is based almost exclusively on the MELD score (Model of End-stage Liver Disease). There are some variations in listing criteria from center to center.

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Response to xchrom (Original post)

Tue Jun 19, 2012, 02:35 PM

34. i have a conflict with the local very popular childrens hospital--they have lots of fund raisers in

local businesses

when asked to contribute i say firmly
no thanks--those bastards have enough of my money.

i have been asked to elaborate and i do

hit em where it hurt-in the wallet

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Response to xchrom (Original post)

Tue Jun 19, 2012, 04:08 PM

39. I'm seriously considering withdrawing my donor status, due to the disgusting abuses of the system...

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Response to Romulox (Reply #39)

Tue Jun 19, 2012, 05:21 PM

43. Please don't

If you don't believe the two of us in the thread who are telling you from our direct experiences what the concerns are that this policy addresses, please do some independent research rather than assuming that removing these people from the list was an abuse of the system.

As I pointed out earlier, there are significant errors in the article - including false allegations that make the actions seem more outrageous. Two of these are:

One of the recipients was just two months from transplant. An individual may receive "the call" anywhere from the day s/he is listed to years later. Once you are listed, there is a continuous re-evaulation of your status. For livers, as your MELD score goes up or down (and it does change over time) you move closer to being the one in line for the next liver - or farther away. There is just no way to predict how far away you are from getting the call.

If they go back on the list the go to the end of the list. Same error. Position on the list has absolutely no relation to how long you have been on the list. Assuming the individual's condition deteriorated while off the list, they could well be eligible for the next available compatible liver on the day they are re-listed - even if there are people who have been on the list continuously for years.

Those aren't the only objective errors in the piece - so anything else the article says should be viewed skeptically. So please, investigate for yourself, before you decide to take yourself off the donor list.

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Response to Ms. Toad (Reply #43)

Thu Jun 21, 2012, 04:52 PM

54. David Crosby, Larry Hagman, Mickey Mantle, Dick Cheney. Also granted organs based on an "objective"

calculus, were they?

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Response to Romulox (Reply #54)

Fri Jun 22, 2012, 10:26 AM

56. You are propagating dangerous and destructive myths. Please. Just stop.

The criteria is objective.

My sister was #3 on her list (B- blood type, double organ transplant). When the organs became available she got the transplant because the first two people were too ill to have the surgery that day. What may have had the appearance of "favoritism" (she's a prominent mental health professional in CA with a very powerful state position), was just the way the cards were dealt THAT DAY.

I don't know the exact particulars of the organ transplants for any of the celebrities you mentioned but whatever happened in the past has no relevance to today's operation. The MELD score pretty much trumps every other factor and its as objective a criteria as you can design.

Organ donation should be a voluntary gift. While I certainly can't make anyone stay listed as a potential donor, its important you and your family are 110% comfortable with it.

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Response to riderinthestorm (Reply #56)

Fri Jun 22, 2012, 12:35 PM

58. LOL. The corruption in the system isn't the problem--it's *TALKING ABOUT IT* that's dangerous.

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Response to Romulox (Reply #58)

Fri Jun 22, 2012, 12:49 PM

61. Oh please talk about it all you want so we can continue to correct you. nt

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Response to riderinthestorm (Reply #61)

Fri Jun 22, 2012, 01:43 PM

62. You *just* claimed ignorance of the particulars of these cases, and then demanded I "stop".

"I don't know the exact particulars of the organ transplants for any of the celebrities you mentioned"

Google first. Hold yourself out as an expert second.

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Response to Romulox (Reply #62)

Fri Jun 22, 2012, 02:17 PM

67. I've never put myself out there as an expert. Just someone with first hand experience

Go Romulox! Double kick! Perfect! I could do this forever... please continue.

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Response to riderinthestorm (Reply #67)

Fri Jun 22, 2012, 02:20 PM

69. Then why even respond when you assert *complete ignorance* of these abuses???

It's because of your "even handedness", no doubt.

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Response to Romulox (Reply #69)

Fri Jun 22, 2012, 02:44 PM

72. I said I didn't have the "exact particulars" of their cases (not ignorance). Neither do you.

None of us does since that's private patient info. I can only tell you what the criteria is, explain my very, very recent history with this and how its impossible to cheat the system. Its imperative that anyone considering being a donor has a full and complete picture. People are dying because of misinformation like you are trying to spread as they remove themselves from the donor list over untrue statements they've read on the internet. Please. Don't spread misinformation - that's my point.


Thanks for the kick!

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Response to riderinthestorm (Reply #72)

Fri Jun 22, 2012, 02:45 PM

73. You could've googled each one of these cases 10 times over, if you were looking for facts.

Instead, like many internet "experts", you went straight to lecturing.

"Thanks for the kick!"

I don't think you understand how repulsive this behavior (and its justifications) are to many. Thanks indeed.

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Response to Romulox (Reply #73)

Fri Jun 22, 2012, 02:49 PM

75. Innocuous items like candy are on the prohibited substances list for potential transplant patients

You have no idea how ignorant and repulsive you sound to many who are desperate for an organ, and who would gladly do what is required to ensure the health and longevity of this great gift.

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Response to riderinthestorm (Reply #75)

Fri Jun 22, 2012, 02:50 PM

76. Right. There is a "perfect" explanation for letting this woman die. It's all "by the book". nt

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Response to Romulox (Reply #76)

Fri Jun 22, 2012, 02:57 PM

81. It IS all by the book. Exactly the point. Exactly. And she doesn't HAVE to die if she'd follow

protocols as specified because of the potential drug interactions and medical complications post-transplant.

This isn't really about pot (much as you and others want to make it about that). Its really a non-compliance issue. She could be eating Twizzlers and get kicked off just as fast (and be put back on in the exact same spot as soon as she quit eating Twizzlers).

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Response to riderinthestorm (Reply #81)

Fri Jun 22, 2012, 05:23 PM

97. Once again, both disgusting and devoid of reason. nt

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Response to Romulox (Reply #97)

Fri Jun 22, 2012, 05:37 PM

99. Follow the transplant team's orders and stay on the transplant list.

So unreasonable and disgusting...

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Response to riderinthestorm (Reply #75)

Fri Jun 22, 2012, 02:51 PM

77. And you still have failed to speak to organ transplant abuse, which is what this subthread is about.

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Response to Romulox (Reply #77)

Fri Jun 22, 2012, 03:08 PM

82. I have. Clearly you aren't paying attention. Good luck with that.

Ms Toad has outlined the protocols for how a person gets placed on the transplant list in her excellent post #35. There's no way to cheat unless the patient's entire transplant team is colluding (my sister's team included two surgeons, a cardiologist, a hepatologist, a nephrologist, a dietician, a psychiatrist, the transplant coordinator RN, and the social worker). I guess an entire team could be "bought" but that ranges into the delusional in my experience. It wouldn't be worth it - jeopardizing the UNOS system and the legitimacy of the programs would be fatal.

The transplant teams have a vested interest in making sure their patient is going to survive - not only because they're medical professionals who presumably care about their patients, but because survivability rates are crucial for the doctors/hospitals reputation and future. They are going to select those that ensure the most potential for success, not because you are Larry Hagman.

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Response to riderinthestorm (Reply #82)

Fri Jun 22, 2012, 03:13 PM

84. So...Dick Cheney COULDN'T have received that heart transplant, eh? Your argument is with reality. nt

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Response to Romulox (Reply #84)

Fri Jun 22, 2012, 03:28 PM

88. I don't know the exact particulars of Dick Cheney's medical record. Neither do you.

I hate the man with a passion but with his history of heart problems, I'm sure he had a very, very high score.

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Response to riderinthestorm (Reply #88)

Fri Jun 22, 2012, 05:22 PM

95. No. But YOU are the only one claiming that abuse doesn't exist. nt

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Response to Romulox (Reply #95)

Fri Jun 22, 2012, 05:35 PM

98. Actually I'm not alone on this. There are others right on this very thread

who have also chimed in to correct you. But since you are clearly stalking my posts (which I don't mind, anything to boost awareness), haven't read anything that's been posted, have resorted to lies and misinformation repeatedly, I'm not surprised you also believe I'm the only one on this thread speaking on this topic.

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Response to riderinthestorm (Reply #56)

Fri Jun 22, 2012, 03:40 PM

89. it most certainly is. And the appeals to emotion have little to do with that set criteria

"The criteria is objective..."

Yes, it most certainly is. And the appeals to emotion have little to do with that set criteria which seems to piss off a lot of people. You have/had a sister on the list, I had a brother on the list and know that regardless of what we'd like to see happen, there are protocols that must be followed to remain.

I would suggest to anyone who feels the criteria is irresponsible or counter-productive become engaged in MMJ from this end rather than simply getting angry and throwing tantrums.

Each set of diseases have different sets of criteria. Heart transplant patients may not eat chocolate or many varieties of nuts, skin graft recipients may not use most types of bar soaps, etc., and get removed from the list if they do use these substances.

Al things being equal, I'd only be guessing as to why or why not MMJ users are removed from the list, as it seems, along with most people on this thread.

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Response to LanternWaste (Reply #89)

Fri Jun 22, 2012, 03:43 PM

90. .




Couldn't have said it better.... hope your brother is doing fine.

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Response to Romulox (Reply #54)

Fri Jun 22, 2012, 04:28 PM

93. To answer that question absolutely,

I would need access to their medical records and the UNOS lists at the time, but being unfortunately intimately familiar with the process, at least in recent years (since they went to a model which allocates organs on the likelihood of death in the near future) I would be extremely surprised if they were allowed to jump the line. For livers (where I can speak with some authority), since 2002, this is how they are allocated: MELD score (a combination of 3 lab values + a bump in score for being on dialysis). Beyond that score, geographical factors kick in to determine whether the available liver stays locally, regionally, or is shared nationally.

Just because famous people receive organs doesn't mean they are receiving them ahead of others who are not famous but sicker. It only inherently means that it makes the paper. There are people who die on the waiting list, but far fewer (waiting for liver) than prior to 2002 when it was easier to game the system if your doctor was saavy about the scoring. Would you deny all famous people the right to be in the organ pool merely to avoid the appearance that subjective criteria are being used?

Just for comparison, my next door neighbor's daughter received a heart and lung transplant in the same time frame as Cheney did. My neighbor has an elementary school education, was a great grandmother well before she was 60, and never earned much more than minimum wage. I don't know all of the daughter's details, but I do know she didn't fall far from the tree. I know a number of people who are receiving liver transplants who are on SSD or SSI. Her waiting time (based on my recollection) was shorter than 6 months - I believe it was shorter than two, but without checking with mom I can't be sure.

In contrast, here are the public details on Cheney's Virginia transplant: The median waiting time for individuals over age 64 in the region containing Virginia was 1.7 months (during the most recently reported data period). Nationally, the waiting time was 5.6 months (same source). This was the first heart he was offered during the 20 months he was listed.

There are ways that money influences the system, but not in the cut to the front of the line sense.

  • Listing in multiple regions is permitted. This means (for livers, I don't know that it holds true for other organs) that we will probably list our daughter in Florida where the waiting list is shorter - in addition to wherever she lives at the time. People without means cannot generally afford the travel or living expenses associated with being listed where they do not live.
  • In order to get on the list, you have to demonstrate your ability (including financial) to cover the costs of the transplant and to maintain the organ you receive. That can be via SSD, SSI, or insurance - but it is challenging. Many people raise money to generate a pot of money to cover costs and the first post-transplant period of time. Obviously, this is easier to do for people with means than without.
  • You also have to demonstrate the social support system to care for you during recovery - including an extended recovery which may be out of state.
  • For organs for which live donors can be used, people with means are probably a lot more able to find willing donors who are able to take the time off work, potentially without pay that is required of a donor, or to have had access to the kind of medical care that would have left potential donors in good enough health to make the cut.

So - the system has the same inequities in it that any medical care has - but having a famous name doesn't directly get you a ticket to the front of the line.

And, bottom line, I expect I unfortunately have a lot more direct connection with how organs are allocated than you can obtain reading the list of people with famous names who just happen to also have had transplants (as opposed to the many more who are just not famous enough to have made the news who also received transplants. I have 4 friends who received liver transplants between Father's Day and now. None of them made the news.)

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Response to Ms. Toad (Reply #93)

Fri Jun 22, 2012, 05:21 PM

94. If you were honest, you would concede abuse. nt

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Response to Romulox (Reply #94)

Fri Jun 22, 2012, 06:03 PM

100. I am honest.

In fact, that is one of the things my friends sometimes complain about when they want to get away with doing things on the sly - but that really has nothing to do with this issue.

I took the allegations of abuse seriously enough to verify everything that I can about one of them (Cheney) without access to his medical records (or the others on the waiting list). Nothing screams abuse - in fact the opposite. Based on what is publicly available it looks as if he waited 11.5 x longer than the average person his age in his region.

Do you have anything beyond a one line dismissal to support your assertion that his far longer than average wait time should have been even longer? Do you have special knowledge that strings were pulled, or that someone else should have gotten the heart he received? If so, I would love to know what it is - because my daughter's life depends on the system being fair, and I am actively working to make sure the system and rules are as fair as they can be - as I actively worked on insurance reform to try (in a lousy model) to make sure that access to health care was tied as little as politically possible to access to money.

Have you, for example, even read the guidelines for organ allocation? (I have, for livers - and I also skimmed the guidelines for hearts to make sure they were as objective as the rules for allocation of livers, and they are.)

Have you participated in the public comment period for the rules when they are up for review if you have concerns that they are being abused? (I don't have concerns that they are being abused - although I do believe they need tweaking because - for example - not all liver diseases are identical even though the UNOS rules treat them identically - and I have participated in the process to advocate for tweaks I believe would make the system fairer.)

If you are not willing to put the effort into understanding how the system is supposed to work and fixing whatever inequities you see in how it actually works, please at least stop discouraging others from donating.

The shortage of organs is really the only reason the abuses you believe are happening make any difference. If there were more than enough organs around, we wouldn't care who was at the front of the line. And, even if you are correct that there are abuses in the system and even if they never get fixed, the rich and famous cannot consume 100% of the organs available. Shutting off the supply just means that there will be fewer organs left for the rest of us after (as you seem to believe the system works) the rich and famous get theirs.

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Response to xchrom (Original post)

Tue Jun 19, 2012, 07:36 PM

49. clearly a political killing.

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Response to xchrom (Original post)

Tue Jun 19, 2012, 11:20 PM

51. Kicking and recommending.

Turned out to be a very informative thread.

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Response to xchrom (Original post)

Fri Jun 22, 2012, 02:09 PM

65. Heh if I ever donated an organ

 

it would not go to this fucking hospital. Thats for sure.

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Response to clang1 (Reply #65)

Fri Jun 22, 2012, 02:53 PM

80. You'd have no control over that.

If you become an organ donor, you would have no choice where your organs went. They go to the next designated person on the transplant list and you'd be saving someone's life.

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Response to xchrom (Original post)

Fri Jun 22, 2012, 02:51 PM

78. But it is medical MJ...doesn't that put her in a class

different from someone buying from a dealer on the streets illegally? Or is it now that ALL people that smoke MJ are unwanted vagabonds?

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Response to Rex (Reply #78)

Fri Jun 22, 2012, 03:12 PM

83. No MJ at all when you're on a transplant list. Even eating certain candy will get you chucked off

as will alcohol etc etc. This is about compliance with the transplant protocols and potential drug interactions with post-transplant medications.

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Response to riderinthestorm (Reply #83)

Fri Jun 22, 2012, 03:23 PM

85. Wow, so have they done extensive studies on MJ and found

it to be hazardous to the transplant process? That is a surprise.

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Response to Rex (Reply #85)

Fri Jun 22, 2012, 03:25 PM

86. I didn't make the protocols for the transplant list. Feel free to email UNOS for that. nt

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Response to riderinthestorm (Reply #86)

Fri Jun 22, 2012, 03:26 PM

87. Didn't say you did, just made the comment.

I really wouldn't waste my time doing so. Seems kinds strange, but OK.

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Response to Rex (Reply #87)

Fri Jun 22, 2012, 04:08 PM

91. Sorry, this subject is very near to me right now

My sister just got her kidney/liver transplant in February. I truly didn't mean to come off so abruptly.

I feel for the women in the OP but if she wants to stay on the list, she has to comply with the protocols. There are other appetite stimulants she can get from the docs.

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Response to riderinthestorm (Reply #91)

Fri Jun 22, 2012, 04:14 PM

92. I hope your sister recovers and lives a long life!

Actually let me be the one to say I am Sorry, I forget how some of these issues are on-going with many DUrs here. I have to agree with lanternwaste...all we are doing is guessing as to why MMJ is off the list and nothing more.

This is obviously a very emotionally charged issue.

Here is to your health and your sister's health, may you both live a long and fruitful life.

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