Medical travesty...

[Flubadubya]

I have just learned of a 25-year-old black female who has autoimmune hepatitis which has caused her to have cirrhosis of the liver. She was evidently on a liver transplant waiting list because her doctor went on to say that she had been REMOVED from the transplant list because she had been found to be smoking marijuana (more than likely from urine drug screens or blood tests).

How outrageous is this!? So, if you are a marijuana-smoking "criminal" you don't deserve to live. This really makes me want to :puke:

Just to be fair, of course, she has supposedly quit smoking marijuana and they will have her on a trial of up to six months (or more) off the list before they will reconsider putting her back on (as long as she doesn't smoke anymore). But she has, I would think, lost her place in line and will go six months with a dangerous disease that could kill her before she can "maybe" qualify again. How wrong is this?!!!

[REP]

1. Illegal Drug Use of Any Kind Takes You Off the UNOS List

Think about it - a person in need of an organ transplant who isn't willing to abstain from non-prescribed drugs may not be the best transplant candidate. If a patient cannot follow a regimen before transplantation, how can that patient be expected to follow the critical steps needed after transplantation? Many drugs are metabolized in the liver - putting additional and unnecessary stress on an ailing liver shows a lack of judgement.

My kidneys are failing; at some point I may be on the UNOS list. I will be given a low priority - not because I'm a drug user (I'm not) or because of my kidney disease (it recurs in tx'd organs) but because I don't have children. Now THAT is unfair - reproductive status determining the worthiness of one's life.

[Flubadubya]

4. Yes, the dispensation for your "childless" situation...

really is quite unfair.

And yes, I certainly do see your point about the compliance issue. I guess just because it is marijuana which probably helps the poor woman tolerate her condition and doubt it does further damage to her liever is why I think it is unfair. If marijuana were not illegal and/or were sanctioned for medicinal purposes (as it should be), the docs themselves might be giving it to her during the transition period. In a way, it is more a condemnation of our societal norms and some of our more draconian laws that bothers me.

[cassiepriam]

5. Correct, doing drugs sabotages the transplant.

[SheilaT]

15. My childless brother

was not given a low priority because of that. He lives in Arizona, which may make a difference. After four years on the list he received a kidney from a living, anonymous donor. What took him so long to get the kidney was connected to his blood type, B, of which apparently there are fewer potential kidneys to receive.

[REP]

20. B- Is The Worst Group For Tx

I'm B-, so I'm not all that worried about being given a low priority due to being childfree (I have FSGS, which makes pregnancy a terrible idea, but I decided not to have children long before I was diagnosed) since I have a snowball's chance in hell of a cadaver organ and a slightly better chance of an anonymous living donor organ.

AB- is the rarest blood group, but is also Universal Recipient. AB+ can receive from A+, B+, O+ or AB+, which ups their odds considerably; B- is the second rarest group in the population (17%), can only receive from B- and O- and has the longest wait time for an organ.

[SheilaT]

28. He's B+, which I gather

is marginally better than B-. He lives in Tucson, and I understand that in the year prior to his getting the kidney, not a single type B kidney transplant had occurred.

And again, if everyone would be willing to donate organs at death, so many more transplants would take place. I don't know if anyone has actually calculated these things, and I don't want to confidently say that universal donation (as I'll call it) would magically solve the problem and that all transplant candidates would quickly get the needed organ, but I do know things would improve enormously.

Good luck to you.

[MannyGoldstein]

2. Bizarre

Does marijuana adversely affect the liver?

Do you, per chance, reside in a red state?

[cassiepriam]

7. Any toxic substance destroys the liver.

And you don't have to be in a red state to understand
basic physiology.

[MannyGoldstein]

9. That Wasn't The Question

I asked if marijuana has an adverse affect. Marijuana is not particularly toxic (I guess you can kill stuff with water - but that doesn't mean it's particularly toxic).

[cassiepriam]

16. Do you give the new liver to a drug addict? Someone who is going to blow out the new liver

with toxic substances?

Or give it to someone with a better track record of being kind to
their liver? Or perhaps to a dying child?

There are not enough organs for every one who needs one.
And hard choices have to be made. Politically correct or not.

Hard choices have to be made every day.
Reality has to be faced.
Not the way we wish things would be,
but the way they really are.

[Cobalt Violet]

18. Yes they do.

The ones who are not actively using get new livers if they become sick enough and one becomes available. Or if your rich and/or famous.

They don't require someone who get a new heart to give up meat do they?
I'm sure glad your not the one who makes these decisions! How far back should they go when considering someones "track record"? Should they not give a liver to someone dying at 45 if they smoke a joint or snorted coke 25 years earlier? What about alcohol? That so bad for the liver. Maybe anyone who has ever had a drink should be permanently barred from the transplant list.

[cassiepriam]

19. I am the kind of person who makes the decisions dear . :) And yes the rich can ruin as many livers

as they can afford. We have several systems of health care,
and the rich get what ever they want.

You may not like what I am saying, but it is reality.

[Cobalt Violet]

23. I'D RATHER DIE THAN KISS YOUR ASS FOR A LIVER, DEARY!

Can't answer the question about if someone ever used drugs if they should be ever be allow an organ, can you deary (:puke:)?

[REP]

21. Just Because Some Cheat The System Doesn't Mean All Should Be Able To

Should an IV heroin user be given a transplant kidney? FUCK NO. Heroin use causes a form of the disease I have (mine is idiopathic), not to mention the risk of hepatitis that comes with IV drug use (liver complications are common with kidney failure). Just because someone is able to cheat the system doesn't mean the rules should be thrown out entirely; it means those centers that are selling organs should be removed from the system and penalized.

[Cobalt Violet]

24. So someone who has ever used heroin shouldn't get an organ.

Ever. Even if it was 10,20,30 years ago? Is that what your saying?

[REP]

26. Since I Didn't Write Those Words, No, That's Not What I'm Saying

Anyone who does not comply with common-sense restrictions while on a tx list - such as not using drugs, licit or illicit, that have an adverse effect on the failing organ should be removed from that list until they demonstrate compliance. That goes for NSAIDs, acetominophen (hepatotoxic) or heroin; it does not mean anyone who's ever smoked a joint, taken a Tylenol or gotten a shot of Toradol should be ineligible for future tx.

[Cobalt Violet]

27. Okay.

I'm all for common-sense restrictions too. But I don't consider some restrictions to be common-sense. I mostly referring to what happened to DUer erma being told she had to go to AA meetings even though she didn't use alcohol. I'm still upset about that. That isn't common-sense to me. But I can see if someone is actively doing something that will damage an outcome of an organ transplant they need be put on hold or removed for a time. I also don't consider having a child or not should even be an issue. That's wrong too.

[niceypoo]

29. Actually I just went to Erma's wake on sunday....

And yes, she had been through 6 months of tests and retests getting ready for the transplant list. When all of that was said and done they told her that she had to go to AA meetings for 90 days before she could get the transplant. This was a couple months before she died. She took this as an absolute insult and basically told them to go to hell. She told me that, unless they find a cure real quick, she was going to die. She was too proud of a person to have to sit through those meetings, as sick as she was, when she didn't even drink. Of course she was very ill by this time anyway, so she didn't have 90 days of life left in her. Her last hurrah was watching Valerie Plame testify. She died satisfied that, finally, something would be done about the crimes of this administration, so she could let go knowing that they will eventually pay. That was her last wish.

Here is her thread: A fiercely loyal, longtime DUer just passed away

[Marrah_G]

30. user....USER.... Not past User.

Jesus Fucking H Christ get a grip. They are talking about CURRENT users. Not some hypothetical 20 years ago I smoked a joint users.

You are looking for a boogy-man and there just isn't one. There are not enough organs to go around, so yes people do have to decide who gets them. They go to the ones with the biggest chance of success. There are of course the not so ethical ones bought by the wealthy also.

No one likes having to choose who lives and who dies, but the alternative is not doing them at all, at least with the technology we have now.

[blondeatlast]

43. Exactly. Compliance and judgment are a HUGE issue here. nt

[Journeyman]

3. Was she told by her doctors not to smoke, or drink, or do other drugs?. . .

If she was, and yet she did, why should she be ahead of someone who has followed the proscribed rules?

There are only so many organs, there are only so many doctors capable of performing transplants. There has to be some criteria. I'd think need and time on the list should be critical components of any such decision. But if there are two deserving patients, and only one available organ, and one patient gives indication they desire it more (by following whatever rules and regimens are established), what do you expect the medical staff to do? By what criteria should questions of life and death be decided, in the absence of desire?

[Flubadubya]

6. I agree, the patient could have abstained, and probably should have...

it's just the position on marijuana that really bothers me. See above post.

[northzax]

31. willing to wager

it would be the same position if she tested positive to nicotine (a legal drug)

[Connonym]

8. It's not the criminal aspect

The qualifications for transplant are strict because of the scarcity of organs. They want the best possible outcome so they disqualify people for health habits that could increase the chance of organ rejection. Drinking alcohol can disqualify you, having an eating disorder can disqualify you, etc. So it is unlikely that being a "criminal" was the reason for disqualification (and, in fact, people in prisons do get transplants) it's the fact that smoking is hazardous to health and it doesn't make her a prime candidate for health reasons. I'm sorry this happened to her and I hope that she's able to eventually get the transplant that she needs but for the transplant to be successful it will require lifelong antirejection drugs and, likely, needing to stop smoking.

The real outrage is the shortage of organs. Perhaps if more people were willing to donate their organs when they die we'd see more of a willingness to take a chance on more risky transplants.

[Flubadubya]

10. Excellent points...

Thanks for sharing. I guess my initial reaction was a bit too visceral and not well thought out. I do see the reasons for all this.

Thanks to all other "rational" responses on this thread as well. :)

[Cobalt Violet]

14. No it wasn't too visceral.

As someone with hepatitis, I may eventually may go through this I appreciate your reaction to the marijuana bigotry. I don't find those responses "rational" or well thought out at all. People who have no clue how painful cirrhosis is and what relief marijuana can be to those symptoms shouldn't pretend to know it all. I can't believe the bigotry. It's not okay to throw any arbitrary obstacle in the path of someone who is sick enough to need a transplant.:puke: They admit that there is a shortage of organ and there is. That's what the problem is. Not people who use marijuana for symptom relief. There is no proof that people who choose marijuana as a medicine are less likely to comply with taking anti rejection drugs. There is not proof that people who use marijuana are less likely to have a positive outcome from transplantaion. The bigoty should stop.

[HiFructosePronSyrup]

17. Would she be disqualified...

if she had been taking marinol?

Doubt it.

[REP]

22. If She Wasn't Prescibed It, Yes She Would

If I were on the list now, I could be disqualified for taking Motrin - and Motrin is an over-the-counter, legal painkiller. It's also nephrotoxic, and taking it would demonstrate that I can't be trusted with my own kidneys, let alone someone else's. (I am in kidney failure - this is not purely hypothetical.)

[no_hypocrisy]

11. They gave new livers to Mickey Mantle (cirrhosis) and to David Crosby

(necesitated by his past drug use). It seems that your friend is A) not a celebrity, and B) can't "buy" her liver like these two liver patients.

That is what is wrong. They make artificial criteria for people who can't buy their way back to good health.

[Cobalt Violet]

25. They both had/have Hepatitis C

I think David maybe headed for another liver as he had to cancel the tour due to his illness again.

[Cobalt Violet]

12. Recommend. It's so wrong.

Cirrhosis isn't a symptom free illness, in fact it's quite painful. She may have gotten relief from her illness from smoking pot. The nausea, vomiting and lack of appetite could have been relieved from it.


We just had a DUer die from being taken off the transplant list because she wouldn't go to AA.

Do you know what state she lived in? I wonder if that state had medical marijuana laws?

[Flubadubya]

13. Texas...

[northzax]

33. there is a chronic shortage of spare livers

and it is a risky operation in the first place. the rules are very clear about what you can, and can't, do. violate the rules during the run-up to the operation, and you get booted from the list (they make this very clear to you).

besides simply destroying a potential donor liver that could go to someone else, there are a few other, less pleasant factors to think about. According to UNOS, the first year of a liver transplant (including the prep, operation and followup) for a operation that goes well averages $314,600. every year of complication free survival costs another $21,900. someone is picking up that tab. live ten years complication free, and you just cost someone a half million dollars, which is well worth it for that ten year survival, no one argues that. But it's a finite world, and if you were going to write that check, wouldn't you prefer to write it for someone who has shown an ability and willingness to follow the very strict regimen that increases chances of survival?

[Tsiyu]

32. It is discrimination

the entire world - including all the scientists and doctors and pharmacisits - should understand by now that marijuana has medicinal benefits.

Perhaps this woman uses it to stimulate an appetite.

When, oh, when are we going to stop demonizing this plant and the people who choose to use it? Meanwhile, last week, three people were apprehended for raping and killing a six-year-old. And one was a convicted molester.

Our prisons are so full of non-violent pot smokers, they can't put the REAL criminals away and now a six-year-old is dead.

Taking this woman off the 'list' was the same sort of travesty.

[northzax]

35. this has nothing to do with marijuana's potential benefits

it has everything to to with not following a regimen.

here's how the Mayo Clinic describes the process:

Once you select a liver transplant center, expect to undergo an evaluation to determine whether you meet the transplant center's eligibility requirements. The evaluation will assess whether you:

* Have a medical condition that would benefit from a transplant
* Aren't likely to benefit from other treatment options
* Are healthy enough to undergo surgery and post-transplant treatments
* Are willing and able to take medications as directed
* Have sufficient emotional stamina to undergo the wait for a donor organ and have a supportive network of family and friends to help you during this stressful time

If liver failure is the result of alcohol or drug abuse, you'll be evaluated to determine whether you currently abstain from use, have received adequate chemical dependency treatment and are at risk of using alcohol or drugs after the transplant.

[Tsiyu]

37. What if the cannabis keeps her alive?

you are buying the premise that cannabis is harmful to her. Perhaps if we didn't pay so much to have a War on Some Drugs and Some (poor) Users we could spend some $$$$$$$ finding out that cannabis is effective and not in any way harmful for a potential transplant patient.

I do not buy that lie - that she is doing something deleterious. You can buy it if you like.

[northzax]

39. no, I am going under the premise that her doctors know a bit more

about medicine than she does. If the only thing keeping her alive is marijuana, then she's not going to survive the operation.

if your doctor says "do not eat or drink anything not on this list, do not take any medication without asking me first" which is basically what they tell you, and you ignore that? on the liver waiting list, you can't drink coffee. take an aspirin, drink a glass of wine, all sorts of things that are healthy for other people to do.

you are a world renowned transplant surgeon, right? I gotta think that I am going with the transplant surgeon on what is, and isn't, potentially harmful to a patient, over what you think.

[blondeatlast]

42. Then she might not need the transplant. I'm on a UNOS list,

I've posted elsewhere in this thread, and I think the restriction is completely appropriate.

Medical compliance is an ENORMOUS factor in recovery from transplant surgery. If you can't be trusted to follow medical directives, why deny a precious, valuable, and extremely rare treatment to one who has more desire to recover than one who disregards prescribed treatment?

[Horse with no Name]

34. As unfortunate as it is

They have rules that you agree to follow when they list you.
I hope she makes it back to the list on the next round.

[blondeatlast]

36. I'm on the UNOS list for a different organ. It's a fair "compliance" issue, for one.

Precious, precious, precious few organs and I think UNOS has every right to prioritize the chances for success.

10-20 years ago? No problem. But if it's in her screening test, it's obviously recent usage. The screening process for listing on UNOS is incredibly stringent because they need to make extraodinarily good use of an etraordinarily precious resource.

They also need to take into account "compliance" issues. The anti-rejection drugs are incredibly expensive and need to be taken on a rock-solid schedule--any deviation from that risks rejection. And I do mean ROCK-SOLID; the slightest deviation could be disastrous almost immediately. Smoking marijuana after being diagnosed seems to me to be testing the compliance waters by sticking both legs in. UNOS--and her insurance company--will not take a risk like that. Makes sense to me.

[colinmom71]

40. That's pretty much what I was thinking...

If she can't even stay on her approved medical regimine *before* a transplant, how is the medical staff supposed to trust that she won't deviate from the very strict and incredibly important anti-rejection medical regimine afterwards? They'd be practically throwing away the donated liver until they can trust her to stay within appropriate medical bounds...

[blondeatlast]

41. I have an insulin pump and had to prove I could be medically compliant

(as in testing my blood glucose 4-6 times a day) for a month, since the pump would be useless if I didn't.

In the case of compliance regarding a transplant, I was read the riot act--any failure could be disastrous.

She has a chance to get back on the list after three months and since severity is part of the criteria, she could jump ahead of someone if she is compliant. It's a reasonable restriction, IMHO.

[colinmom71]

38. I suppose it depends...

On whether she was informed that taking any medications or substances (alcohol, marijuana, etc.) outside her medically approved regimine for her illness would disqualify her from the UNOS list. I have a very hard time imagining that she was not informed about this though. An organ could become available to her at any time while she was on the list and the medical staff need to ensure that they do not have to worry about any substances in her bloodstream potentially having an adverse effect upon the numerous and powerful drugs that would be introduced into her system during and after the transplant.

Heck, for the times my son has been in hospital for diagnostic cardiac caths, I was told not to give him any kind of medicine for up to two weeks before hand or they'd have to reschedule the procedure... I was fully informed of this up-front and that was just for a catheterization. This woman in question had to have been given very similar instructions in order to be placed on the potential recipient list. If she went against medical instructions, then her removal from the list is fair. That they are willing to give her a second chance to get back on the list once she gets the marijuana out of her system is also fair and right.

I'm glad she just has the second chance. My 11 year old son would never even be considered for organ transplantation, probably not even a directed living donation, should he have an organ system failure that could be treated through a transplant. He's severely disabled due to his premature birth and would not be considered a good candidate to receive the scarce resource of a donated organ. I'd never persue the option for him anyway for reasons unrelated to his disabled status, but it still annoys me that it seems like he's not considered a "worthy person" in this manner...