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orleans

(34,053 posts)
Wed Sep 3, 2014, 08:47 PM Sep 2014

is the six month no drinking rule a law or hospital's judgment call for liver transplants?

i know of a 37 yr old who has liver disease.
all this was recently determined
and it turns out because she has cirrhosis and hasn't been alcohol free for six months the hospital won't let 3 people be tested and used as possible donors for her.

instead, she is going into hospice and prognosis given is about a month.

it seems this all happened very suddenly--she wasn't aware that she was so sick.

she is also a child of a vietnam vet who was exposed to agent orange (which someone told me can accelerate the aging process--not sure about this.)

i'm trying to find out if this 6 month rule is a law or just a punishment/judgment call on the part of the hospital.

it just seems unbelievable that they would let this young person die rather than give her a chance because she might drink in the future? or because she hasn't been alcohol free for six months. (she didn't know she was sick six months ago & i've known people who drank far more than her--for years and years!)

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is the six month no drinking rule a law or hospital's judgment call for liver transplants? (Original Post) orleans Sep 2014 OP
They want the transplant to have the best chance of success I suspect still_one Sep 2014 #1
Sad to have to admit that this is probably the reason... NYC_SKP Sep 2014 #6
regarding "others in line" orleans Sep 2014 #9
In that event, it seems wrong. I did not know one could donate parts of the liver. NYC_SKP Sep 2014 #10
As I understand it, whether or not a living donor can be dflprincess Sep 2014 #39
Medicine is fascinating. NYC_SKP Sep 2014 #40
As I said in my other post, I'm at least a blood type match for my stepfather. moriah Sep 2014 #25
Understand. Horse with no Name Sep 2014 #51
see my post 61. it's not that she was non-compliant n/t orleans Sep 2014 #63
It is considered noncompliance Horse with no Name Sep 2014 #64
thank you. n/t orleans Sep 2014 #67
People die during organ donations. Xithras Sep 2014 #57
Not a call I'd want to have to make Aerows Sep 2014 #45
It is a medical judgment call by the hospital. former9thward Sep 2014 #2
A friend of mine was on dialysis for 7 years, they would not give him a kidney until he lost 150 lbs notadmblnd Sep 2014 #3
I believe it's a rule in transplant programs, not a law. PeaceNikki Sep 2014 #4
Same rule for Heart Transplant clients regarding smoke free. FarPoint Sep 2014 #5
My aunt is in that boat xmas74 Sep 2014 #42
My sister's a double kidney/liver transplant recipient. riderinthestorm Sep 2014 #7
There are so few available livers that they are very careful. djean111 Sep 2014 #8
I suspect its her location, insurance plan and the available transplant centers protocol. riderinthestorm Sep 2014 #12
Thanks. It has been 15 years since he died. I spent the final two weeks in the hospital with him, djean111 Sep 2014 #19
Being a donor is a life threatening operation. Ms. Toad Sep 2014 #74
The organization that maintains the waiting list has rules for allocating the organs. LeftyMom Sep 2014 #11
well, like i said in the above post #9-- orleans Sep 2014 #20
If she's already in hospice she may be too debilitated already for the transplant riderinthestorm Sep 2014 #26
omg--tylenol--stupid tylenol-- orleans Sep 2014 #36
Tylenol is incredibly toxic for kidneys and the liver riderinthestorm Sep 2014 #37
I'm B- too! REP Sep 2014 #48
Don't give up! My sister got hers within four weeks of getting on the list in No Cal riderinthestorm Sep 2014 #52
Rare can mean either really short or really long. Ms. Toad Sep 2014 #75
If/when I'm Stage 4, I will do multiple listings REP Sep 2014 #78
Like I said, live donor transplants are risky to the donor as well as the recipient. LeftyMom Sep 2014 #27
UNOS guidelines are 3-6 months. She can have two centers on her wait list. ScreamingMeemie Sep 2014 #13
This is a directed donation from a living donor; I don't think UNOS guidelines apply REP Sep 2014 #16
It's not a "law" but it's standard REP Sep 2014 #14
Everyone should be an organ donor! Owl Sep 2014 #15
Not everyone is suitable REP Sep 2014 #18
This will obviously be assessed prior to your death. Owl Sep 2014 #22
Eh, even if I get hit by a bus now REP Sep 2014 #24
Yep, if REP or Owl are flattened by a bus all bets are off. Owl Sep 2014 #38
Fortunately, I'm In Pretty Good Shape To Be A Donor ProfessorGAC Sep 2014 #58
This probably makes me a bad liberal Codeine Sep 2014 #21
Sorry, but NO. That is liberalhistorian Sep 2014 #50
i think instead of being an opt-in condition, it should be an opt-out condition La Lioness Priyanka Sep 2014 #53
I agree with opt out kcr Sep 2014 #70
yup and most people will do what the thing is the norm La Lioness Priyanka Sep 2014 #73
My stepfather is finally on the list after having been sober six months. We didn't know if he'd.... moriah Sep 2014 #17
What a terrible position for you REP Sep 2014 #23
Like others said pipi_k Sep 2014 #28
Not 'punishment,' I think, elleng Sep 2014 #29
Nobody wants to do a transplant doomed to fail, or put a healthy donor at risk. hunter Sep 2014 #30
I'd really love to know where in the US they're operating outside UNOS guidelines riderinthestorm Sep 2014 #32
I'd stay in California. hunter Sep 2014 #43
St Vincent's in LA - until they got caught REP Sep 2014 #47
One case more than 10 years ago does not indicate widespread fraud within UNOS riderinthestorm Sep 2014 #49
Not within UNOS - within individual programs that are part of UNOS REP Sep 2014 #79
My husband is dying from cirrosis. Texasgal Sep 2014 #31
I am so sorry. My sister went through an intensive background and insurance check riderinthestorm Sep 2014 #35
If she's not drinking now and has been off the sauce for awhile maybe the medical tourism route is MADem Sep 2014 #33
A) I would suspect that she was told about this before the tests were done. HuckleB Sep 2014 #34
As my sisters primary transplant support person, +1000 to your post riderinthestorm Sep 2014 #44
My aunt has to be six months without tobacco of any sort xmas74 Sep 2014 #41
thank you everyone for your posts. they are all much appreciated. n/t orleans Sep 2014 #46
Were they aware of the no drinking rule? NCTraveler Sep 2014 #54
no one was aware of this "rule" until several days ago orleans Sep 2014 #61
She has an extreme drinking problem to have cirrhosis at 37 taught_me_patience Sep 2014 #55
Not necessarily Horse with no Name Sep 2014 #66
And Don't Use MedCannabis fredamae Sep 2014 #56
It's really discouraging when you call the transplant teams "death panels" riderinthestorm Sep 2014 #59
Show me the fredamae Sep 2014 #62
Sorry but if there's the slightest possibility that cannabis is going to fuck up a transplant riderinthestorm Sep 2014 #65
Then shouldn't these patients fredamae Sep 2014 #68
Are you really saying that post transplant patients take MJ and not their anti-rejection meds? riderinthestorm Sep 2014 #69
Where did I say that? fredamae Sep 2014 #71
You say it here: riderinthestorm Sep 2014 #72
That statement is true fredamae Sep 2014 #77
Sorry, but once you are listed you have been told very clearly what the rules are. Ms. Toad Sep 2014 #76
There is no law regarding this. It is transplant protocol. MohRokTah Sep 2014 #60
 

NYC_SKP

(68,644 posts)
6. Sad to have to admit that this is probably the reason...
Wed Sep 3, 2014, 09:03 PM
Sep 2014

...
...and it's probably medically sound, given the demand and fact that others are in line who have less or no history of abusing their liver.

Good lord, what hard calls to have to make.

~sigh~

orleans

(34,053 posts)
9. regarding "others in line"
Wed Sep 3, 2014, 09:10 PM
Sep 2014

the three people who know/are related to this girl had no intention of donating part of their livers to other people. they are willing to have this surgery to save their sister's life.

i guess i'm just shocked about this because, like i said, this girl didn't drink nearly as much or for as many years as a lot of people i've known. and because she only recently became ill and it's so bad so suddenly--and even though she has three potential donors this denver hospital is saying: nope.

 

NYC_SKP

(68,644 posts)
10. In that event, it seems wrong. I did not know one could donate parts of the liver.
Wed Sep 3, 2014, 09:14 PM
Sep 2014

I'm sorry that this is happening, and I wish I could help.

Could it be a matter of liability? We're talking about four major surgeries with possible complications.

I just had brain surgery that was followed by an infection of the surgical site, the debridement surgery was nearly as complex as the original surgery and about as costly.

Again, best wishes for a positive outcome.

dflprincess

(28,079 posts)
39. As I understand it, whether or not a living donor can be
Wed Sep 3, 2014, 10:22 PM
Sep 2014

Last edited Thu Sep 4, 2014, 10:13 PM - Edit history (1)

used depends on how the donor's liver is made and whether or not it can be bisected in a way that will allow it to be connected to the recipient. If all goes well, the donor's liver will regenerate.

My friend's husband needed a new liver and his nephew was going to donate, but the nephew's anatomy didn't allow it. He waited for a new liver for years but never got sick enough to be bumped to the top of the list - until last spring when he went downhill so quickly he became too sick for a transplant and died waiting.

Given the shortage of organs I can understand why the hospital has some rules about alcohol use, but I'm not sure it sounds like they should have applied in this woman's case.


 

NYC_SKP

(68,644 posts)
40. Medicine is fascinating.
Wed Sep 3, 2014, 10:26 PM
Sep 2014

Your explanation makes sense, I just always thought that cadaver livers were the only route, thus the scarcity.

I think of kidneys coming from family donors.

Thanks!

moriah

(8,311 posts)
25. As I said in my other post, I'm at least a blood type match for my stepfather.
Wed Sep 3, 2014, 09:46 PM
Sep 2014

One other nasty reality about the organ transplant business -- success rates drive individual hospital review board decisions. If a transplant is statistically unlikely to have a good outcome, a lot of hospitals won't do them because they're afraid of lowering their success percentages, which would mean fewer people would come to them for surgeries.

Is she already on a pentoxifylline and steroid regimen if it's alcoholic hepatitis vs cirrhosis? It has been shown to improve survival chances, though it's a last-ditch chance.

-----

If I were in your shoes, I would get the best writer in the family to write a very compelling letter to the transplant hospital asking for a "compassionate allowance for living donation". Then make it public if there is a negative response, by sending it and any response they give to several local media outlets, if your friend is willing to be in the spotlight to save her life. Bad press might be enough to make them consider a compassionate allowance.

Horse with no Name

(33,956 posts)
51. Understand.
Thu Sep 4, 2014, 12:54 PM
Sep 2014

But every one of these people are putting their life at risk to have this surgery and if the surgeons feel that she will not be compliant, then it is a waste of an organ.

Noncompliance and transplants do not coexist--no matter who the donor is.

I am very sorry for your friends dilemma. Sending kind thoughts to her and her friends and family.

Horse with no Name

(33,956 posts)
64. It is considered noncompliance
Thu Sep 4, 2014, 05:06 PM
Sep 2014

whether she willfully did it or was ignorant of the situation. They won't differentiate between the two. The rules suck but most of the time, it is done in the best interest of the transplant. As in everything else, a few people, like your friend, are going to get caught in the red tape. It is a horrible situation. I truly am very sorry.

Xithras

(16,191 posts)
57. People die during organ donations.
Thu Sep 4, 2014, 02:02 PM
Sep 2014

It's uncommon for donors to die, but it does happen now and then. I remember a case in the news just a year or two ago where a guy was donating part of his liver to a brother, and died on the table. Doctors are generally unwilling to put a donors life at risk to conduct a transplant unless there is a high probability of success.

Cirrhosis in your 30's indicates a serious and long term drinking problem. Doctors aren't going to put a donors life at risk to conduct a liver transplant that is likely to fail.

former9thward

(32,017 posts)
2. It is a medical judgment call by the hospital.
Wed Sep 3, 2014, 08:52 PM
Sep 2014

No law. That said it should be noted that if you tell doctors the truth you may pay with your life.

notadmblnd

(23,720 posts)
3. A friend of mine was on dialysis for 7 years, they would not give him a kidney until he lost 150 lbs
Wed Sep 3, 2014, 08:53 PM
Sep 2014

his son was to be his donor, however type 2 diabetes runs in the family and they would not let him donate. He got his new kidney a week ago last Thursday after finally losing the weight and his place on the list.

I don't think it is law, but I'm certain they have reasons for their processes.

PeaceNikki

(27,985 posts)
4. I believe it's a rule in transplant programs, not a law.
Wed Sep 3, 2014, 08:54 PM
Sep 2014

I don't think it's meant to be punitive, but I can see how it feels that way when facing fatal illness.

I'm sorry.

FarPoint

(12,409 posts)
5. Same rule for Heart Transplant clients regarding smoke free.
Wed Sep 3, 2014, 08:57 PM
Sep 2014

The team even does drug screening for nicotine. They can't even get on the list until 6 months nicotine free. Many die during this cruel waiting period. I know of a 25 year old who did not live long enough to make the list. She was a mother and wife...18 month old son.

xmas74

(29,674 posts)
42. My aunt is in that boat
Wed Sep 3, 2014, 10:29 PM
Sep 2014

She has to be six months nicotine free before they will consider a lung transplant.

 

riderinthestorm

(23,272 posts)
7. My sister's a double kidney/liver transplant recipient.
Wed Sep 3, 2014, 09:04 PM
Sep 2014

It's not a law. Its medical protocol to ensure the transplant has the best chance of success.

The chemistry is incredibly tricky during optimum conditions.

Alcohol is a huge complication for the body's filtration system. Your friend would also have been knocked off for MJ, licorice, obesity, multiple OTC and/or Rx drugs, noncompliance with the treatment plan before the transplant etc. - any of that within the past six months as well.

The protocol is really strict because its hard enough to get right in the first place and organs are rare and priceless. It's not punitive. Really. The hospital pharmacist AND a dietitian were in on all my sisters medical exams along with the rest of the transplant team because the docs understood how critical the pharmaceutical and dietary input was to success.

All that said, I'm so so sorry for you and your friend.





 

djean111

(14,255 posts)
8. There are so few available livers that they are very careful.
Wed Sep 3, 2014, 09:07 PM
Sep 2014

That being said, if she had three living donors, this is just cruel. A part of a liver can be donated, and it will grow. So, really, this is not doing anyone else out of a liver unless the donors are not personal acquaintances and would have donated a part of their to anyone who needed it. Or perhaps they felt she would bleed out during the operation. The worse a liver is, the more likely that may happen. Alcohol may have exacerbated the problem.

In 1999 my sweet boyfriend/fiancé developed a very sudden liver failure. He was not a drinker, and never was a person to take drugs.
If we had a bottle of wine, he would take a small glass and I would drink the rest. It is a wonder that MY liver did not sneak off in the middle of the night and leave a note that said hey, I have to save myself. But my liver is just fine.
Anyway, by the time he got a diagnosis, it was too late, methinks, plus days were lost while the hospitals/insurance company wrangled over who got the lucrative transplant business. Ugly, that. And then he cascaded, and that was that. Ugly way to go.
But for a long time, people would ask about him, and my answer was given in one run-on sentence - Larry died of liver failure no he did not drink or take drugs. The judgmental shit was horrid.

The hospital/insurance companies do not want to waste a liver, do not want to pay for an unsuccessful operation, do not want to pay for a second transplant. But, again, if she had personal donors, and no liver would have been "wasted", I am not sure what the problem is.

 

riderinthestorm

(23,272 posts)
12. I suspect its her location, insurance plan and the available transplant centers protocol.
Wed Sep 3, 2014, 09:18 PM
Sep 2014

My sister had to also prove she had the financial and insurance capability to pay for all of it.

Her team would have taken a private donor. Some teams won't. And the donors also are strictly screened. Have they had Tylenol in the past 6 months? Eliminated! Drugs, alcohol, licorice and a slew of other stuff would also eliminate them as donors until the 6 month "clean" period was through.

My sister wasn't a drinker or drug user either. She caught Hep C as a 20 year old RN student which fatally weakened her kidneys and liver. She actually coded during a colonoscopy at 60 years old which completely killed her kidneys and liver but yeah, the prejudice and ASSumptions that she was somehow undeserving due to substance abuse was rife during her crisis....

So so sorry about your fiancé. Until you've lived with that kind of organ failure nobody understands the horror...



 

djean111

(14,255 posts)
19. Thanks. It has been 15 years since he died. I spent the final two weeks in the hospital with him,
Wed Sep 3, 2014, 09:31 PM
Sep 2014

the nurses let me sleep in the ICU. Which should have been a clue.
He had really really good health insurance, they would have coptered him from Tampa to a university hospital in another state, because of the success rate, but it was felt he would not survive the flight. We spent wasted days trying to get everyone to agree where this should be done. I was harangued by hospital staff, hospital lawyers, the insurance people. At no point did anyone at the hospital tell us things were hopeless.

I am still shell-shocked by the whole thing.

Anyway, for everyone - the signs that, if we had only known, may have gotten him to the doctor sooner - unexplained back pain (he blamed it on a repaired herniated disc), unusual weight gain/swelling in the abdomen, near the end there was a brutal cough, he thought he had the flu, but it was really the swollen liver pressing up against his diaphragm. Yellowing skin from jaundice. Yeah, depressing stuff, but it is imperative to try and catch this before it is too far gone.

Ms. Toad

(34,074 posts)
74. Being a donor is a life threatening operation.
Fri Sep 5, 2014, 12:37 AM
Sep 2014

Under normal circumstances, doctors do not intentionally create significant medical risk that does benefit the patient (the donor).

In order for it to be ethical put the donor at risk of dying, or other major complications, they have an obligation to ensure that the benefit to the recipient will not be sabotaged by the recipient (or otherwise have a poor chance of succeeding). Six months is the period established by OPTN as a reasonable demonstration that the recipient really does have the motivation and ability to make what is an extremely difficult change in behavior - because if the behavior doesn't change, the new organ will be destroyed.

As to your bf/fiance - PSC, by any chance? I know the judgmental sh*t well.

LeftyMom

(49,212 posts)
11. The organization that maintains the waiting list has rules for allocating the organs.
Wed Sep 3, 2014, 09:16 PM
Sep 2014

Live donor liver transplants are not without risk to the donor as well as the recipient, and of course postmortem donations are in short supply. She's not healthy enough to get one right now, and putting a transplant organ in somebody who is not a good candidate is consigning a better candidate to die waiting.

It's fucked up, but there just aren't enough organs. If you don't like it sign up to donate, and make sure your family knows you mean it, because that's the only thing that's going to change the situation, at least until stem cells or something can be used for replacement organs.

Livers are in particularly short supply right now because approximately 137% of old hippies have hepatitis c.

orleans

(34,053 posts)
20. well, like i said in the above post #9--
Wed Sep 3, 2014, 09:34 PM
Sep 2014

the three people lined up and willing to go through this surgery are her brothers.

funny you telling me "If you don't like it sign up to donate" because i know three people who are TRYING to donate to help a specific individual stay alive and the hospital will not let them!

 

riderinthestorm

(23,272 posts)
26. If she's already in hospice she may be too debilitated already for the transplant
Wed Sep 3, 2014, 09:47 PM
Sep 2014

My sister was actually #3 on her list (B- blood type so very rare).

The two ahead of her were too sick to undergo the surgery when the organs came available so she jumped the line so to speak.

Also have the three brothers been "clean" for 6 months? Alcohol, Tylenol, licorice, MJ, etc ? If they aren't, there's problems on their end too...



I am so sorry about this. It completely sucks.

orleans

(34,053 posts)
36. omg--tylenol--stupid tylenol--
Wed Sep 3, 2014, 10:09 PM
Sep 2014

i'm sure one of the guys takes tylenol. and i can't be sure about licorice but i suspect at least a couple of them don't like it. pot and alcohol--they're clean.

it's the tylenol...!

they want to start her in hospice tomorrow, and send her home in ten days...

it's so crazy/fast and she's so young. wow...i can't believe this!

 

riderinthestorm

(23,272 posts)
37. Tylenol is incredibly toxic for kidneys and the liver
Wed Sep 3, 2014, 10:13 PM
Sep 2014

Most people don't realize how awful it is for our bodies....



And if they suspect she's terminal within 10 days then she really is too weak to have the surgery.

So very sorry....



REP

(21,691 posts)
48. I'm B- too!
Thu Sep 4, 2014, 02:30 AM
Sep 2014

I'm only Stage 3 CKD but I'm about to be listed due to being B- ... there's almost no hope of a tx.

 

riderinthestorm

(23,272 posts)
52. Don't give up! My sister got hers within four weeks of getting on the list in No Cal
Thu Sep 4, 2014, 01:00 PM
Sep 2014

It was a short list because of the blood type and the first two on the list were too sick at the time the organs came available.

There's always hope! Compliance with their protocol is key. Work hard to stay within their requirements on everything. They will test your blood every which way to ensure it.



Sending big (((((vibes)))) your way!

Ms. Toad

(34,074 posts)
75. Rare can mean either really short or really long.
Fri Sep 5, 2014, 12:42 AM
Sep 2014

Do some investigation and get listed in the place that has the fastest transplant time - Florida used to be very fast, but I haven't checked in the last year or so.

Also - if you can afford it, get listed in multiple regions. You have to be able to relocate to the region for a significant period post-transplant, and have to be able to reach the transplant center within a certain time period of the call - but many people can manage to get listed in two regions.

REP

(21,691 posts)
78. If/when I'm Stage 4, I will do multiple listings
Fri Sep 5, 2014, 03:20 PM
Sep 2014

The wait time for B- kidneys hasn't changed (I've never seen so many doctors look so sad when they saw my dx and blood type). I'll be given a low number, in part because I have been compliant (no children - pregnancy is not advised with my disease, but also assigns lower priority); because of my primary disease; the two other kidney diseases; and existing comorbid conditions.

I will be able to do in-home hemodialysis, even if I have buy my own dialysis machine, and that will greater improve everything. But I'm not Stage 4 yet (but I've been putting off my next test). And I could stay Stage 3 forever ... not likely, but anything can happen!

LeftyMom

(49,212 posts)
27. Like I said, live donor transplants are risky to the donor as well as the recipient.
Wed Sep 3, 2014, 09:49 PM
Sep 2014

I have a family member who is likely going to need one so I've looked into it a lot, and I've had to accept the reality that when the time comes I might not get to offer because of factors in my family member's health.

That your family member has live donors available does not matter if she's not a good transplant candidate. Nobody can in good conscience allow her siblings to risk their health if there's not likely to be any long term benefit.

ScreamingMeemie

(68,918 posts)
13. UNOS guidelines are 3-6 months. She can have two centers on her wait list.
Wed Sep 3, 2014, 09:21 PM
Sep 2014

I would make some phone calls.

Here's your information:

http://gastro.ucsd.edu/fellowship/materials/Documents/OLT/transplant%20review.pdf

Patients must be abstinent of alcohol and illicit drugs (and in some institutions, tobacco) for a
minimum of 3–6 months

REP

(21,691 posts)
16. This is a directed donation from a living donor; I don't think UNOS guidelines apply
Wed Sep 3, 2014, 09:28 PM
Sep 2014

Where I am, if my husband is a suitable donor for me, I don't have to go through UNOS. I don't know about livers though.

REP

(21,691 posts)
14. It's not a "law" but it's standard
Wed Sep 3, 2014, 09:25 PM
Sep 2014

The most common causes of cirrhosis are alcoholic fatty liver disease (AFLD), Hep C and Hep B. The first two are strongly associated with risk prone behavior by the patient; Hep B is passed by body fluids so risk prone behavior is a factor as well. With donor organs in such short supply, the risks of the surgery (for the patient and living donor), and the immunosuppressant drugs needed post-surgery (not to mention the cost and time of the transplant team) - they want to be sure they'll be working on someone healthy enough to withstand the surgery, who will have a good outcome, and won't lapse into behavior that destroyed their liver function (and don't want to risk someone else's life, in the case of a living donor, who has to also undergo major surgery that's completely unnecessary for their health or well being).

REP

(21,691 posts)
18. Not everyone is suitable
Wed Sep 3, 2014, 09:30 PM
Sep 2014

Assuming I die from what I'm sick with, none of my organs will be suitable, and very little tissue will be (but they're welcome to it).

REP

(21,691 posts)
24. Eh, even if I get hit by a bus now
Wed Sep 3, 2014, 09:42 PM
Sep 2014

I think they eyes are good to go. Kidney disease screws up a lot of things, including bones and diabetes fucks up everything else!

ProfessorGAC

(65,058 posts)
58. Fortunately, I'm In Pretty Good Shape To Be A Donor
Thu Sep 4, 2014, 02:04 PM
Sep 2014

Since i went blind from MS, i have an eye i haven't used in 20+ years. The eye is perfectly healthy, but i've got a lesion where the optic nerve lands leaving me with only peripheral vision in that eye. So, the eye is 58 years old, but only has 38 years of mileage.

Of course, i don't know about my heart. I had a stress test a few years ago and the cardio guy said i had no heart issues.

With the MS and RA medicine, i can't make any guarantees about my liver and kidneys, though.

 

Codeine

(25,586 posts)
21. This probably makes me a bad liberal
Wed Sep 3, 2014, 09:38 PM
Sep 2014

but I don't believe there should be a choice involved. Once you die your organs should be automatically harvested for those who need them.

liberalhistorian

(20,818 posts)
50. Sorry, but NO. That is
Thu Sep 4, 2014, 12:48 PM
Sep 2014

creepy, authoritarian and Orwellian. People and families still have the right to make choices regarding their own bodies, period, and no one else has the right to make those choices for them. We can't be pro-choice and pro-body-autonomy in some cases, such as abortion and end-of-life decisions, and not in others. And your use of the term "harvest" is positively chilling.

People and society need to be as considerate of donors as they are of donees, because all the focus seems to be on the donees and their needs and their life. The potential donor's life is just as important, people do not exist in a hierarchy to be a body factory for others.

 

La Lioness Priyanka

(53,866 posts)
53. i think instead of being an opt-in condition, it should be an opt-out condition
Thu Sep 4, 2014, 01:06 PM
Sep 2014

i wonder how many people would be donors but were too lazy/forgetful/not-knowledgeable to check off a box

kcr

(15,317 posts)
70. I agree with opt out
Thu Sep 4, 2014, 06:08 PM
Sep 2014

If they're too lazy to take the time to opt out they must not have cared about it enough.

 

La Lioness Priyanka

(53,866 posts)
73. yup and most people will do what the thing is the norm
Fri Sep 5, 2014, 12:18 AM
Sep 2014

so if the norm is opt in they'll stay opted in

moriah

(8,311 posts)
17. My stepfather is finally on the list after having been sober six months. We didn't know if he'd....
Wed Sep 3, 2014, 09:29 PM
Sep 2014

... make it -- whether he'd live six months, or whether he could put down the bottle that long.

I'm a match for him, at least by blood type.

I care about him, but I know how bad of an alcoholic he has been. I know how hard he tried to quit drinking before. I know in his case, six months may not be enough "probation", because he'd been sober before for 7 years, then deteriorated when he met my mother and found someone who would enable him.

Despite my misgivings, I offered to be tested, and my mother refused. I think she doesn't want me to waste half my liver if he decides to drink again, either.

-----

I'm honestly surprised they are offering hospice care. My SF's liver enzymes were off the charts, he lost 8 pints of blood in two separate bleed-out instances, and is on so many different medications that give him quality of life issues, but he's still here. If she is young and determined, she ought to have a better prognosis.

She will be in my thoughts and prayers.

REP

(21,691 posts)
23. What a terrible position for you
Wed Sep 3, 2014, 09:39 PM
Sep 2014

I am about to be listed for transplant (people with my blood type and kidney disease get listed early because the wait is so long). My husband has offered to donate to me if he's a match, but - while I'm still independent of machinery, at least - I can't even imagine agreeing to him having major surgery for my convenience. Livers are different than kidneys, though, and I'm sorry you and your family are going through this.

pipi_k

(21,020 posts)
28. Like others said
Wed Sep 3, 2014, 09:50 PM
Sep 2014

it's probably just standard procedure.

My daughter's husband died from a combination of liver disease plus diabetes.

I have photos someplace showing his abdomen during one of his bouts with Ascites, after his navel swelled up so badly (to the size of a baseball) it burst, requiring its removal.

Literally quarts and quarts of fluid were removed from his abdominal cavity over the course of a year or two. Still he kept drinking. I can't imagine the doctors gave him much chance of surviving major transplant surgery anyway, so the odds were the same either way.

elleng

(130,956 posts)
29. Not 'punishment,' I think,
Wed Sep 3, 2014, 09:51 PM
Sep 2014

but practical. As you say, she 'hasn't been alcohol free for six months.'

I doubt this happened suddenly, but I'm not surprised she wasn't aware she was so sick. Most alcoholics aren't aware of such.

hunter

(38,316 posts)
30. Nobody wants to do a transplant doomed to fail, or put a healthy donor at risk.
Wed Sep 3, 2014, 09:53 PM
Sep 2014

That said, there are still places in the U.S.A. where they'll thumb the scales for or against the desperately ill for reasons of profit, puritanism, or worse.

I've been involved in situations of immediate medical triage, and my wife and sister are both authorities in medical triage, but the transplant people live somewhere else, in a world of cold, hard, very slowly evolving statistics.

It's not something I'd choose to do.

There may be more to the story than you've heard. Or not.

Everyone who is seriously ill needs advocates, friends, and family.

 

riderinthestorm

(23,272 posts)
32. I'd really love to know where in the US they're operating outside UNOS guidelines
Wed Sep 3, 2014, 10:02 PM
Sep 2014

For transplants.

Someday my sister may need another one. Where are they "putting the thumb down" for transplants in the US?

She's a worthy candidate: director of the county mental health services for a major California county - so someone who is putting herself on the line daily for the least of us.

AFAIK the transplant system in the US is truly one of the last un corrupted places in the medical field. But if you're saying you know different please pm me. We have family all over the country and getting her placed somewhere else that's scamming the system would be a snap.

Do tell.

 

riderinthestorm

(23,272 posts)
49. One case more than 10 years ago does not indicate widespread fraud within UNOS
Thu Sep 4, 2014, 12:42 PM
Sep 2014

Sorry just not buying it.

REP

(21,691 posts)
79. Not within UNOS - within individual programs that are part of UNOS
Fri Sep 5, 2014, 03:22 PM
Sep 2014

UNOS didn't do anything wrong in the LA cases; the hospitals did. Where money is involved, I'm always cynical.

Texasgal

(17,045 posts)
31. My husband is dying from cirrosis.
Wed Sep 3, 2014, 09:54 PM
Sep 2014

He had hep c for many years before it was detected. He stopped drinking 10 years ago and he is still having a problem even being LISTED because of insurance obligations. The alcohol wasn't even the reason... it was Hep C.

I am a bit emotional about this situation so please forgive me. Your friend should NOT be drinking period. There are those of us that have gone through years and years of issues just to get on the MELD.

 

riderinthestorm

(23,272 posts)
35. I am so sorry. My sister went through an intensive background and insurance check
Wed Sep 3, 2014, 10:07 PM
Sep 2014

Before she was placed on the list.

Most people don't realize that you also have to demonstrate the financial resources to get a transplant. The post transplant med protocol is BIG $$$ beyond the surgery. You have to be able to fund the drug regime after....

MADem

(135,425 posts)
33. If she's not drinking now and has been off the sauce for awhile maybe the medical tourism route is
Wed Sep 3, 2014, 10:02 PM
Sep 2014

the way to go....?

http://www.medicaltourismco.com/organ-transplant/liver-transplant-surgery-abroad.php

It's not cheap over there either, but way less than here.

HuckleB

(35,773 posts)
34. A) I would suspect that she was told about this before the tests were done.
Wed Sep 3, 2014, 10:06 PM
Sep 2014

This stuff is not done lightly, ever.

B) The Agent Orange issue is, well, not an issue as far as the science goes.

C) If she had been given the full story, and her possible donors had been given the full story, then, maybe there would be a problem. I suspect there is much more to the story, however, as I've worked for years with organ donor ogranizations and doctors.

 

riderinthestorm

(23,272 posts)
44. As my sisters primary transplant support person, +1000 to your post
Wed Sep 3, 2014, 10:30 PM
Sep 2014

I was with her for six weeks post transplant at CPMC in San Francisco (besides all of the pre-OP visits).

I too, believe there's a lot of backstory we aren't hearing and that the OP isn't privy to.

xmas74

(29,674 posts)
41. My aunt has to be six months without tobacco of any sort
Wed Sep 3, 2014, 10:26 PM
Sep 2014

before they will grant her a lung transplant. I don't know if she'll make it.

 

NCTraveler

(30,481 posts)
54. Were they aware of the no drinking rule?
Thu Sep 4, 2014, 01:07 PM
Sep 2014

I see where you state it was recently determined, but recently is a relative term.

orleans

(34,053 posts)
61. no one was aware of this "rule" until several days ago
Thu Sep 4, 2014, 04:18 PM
Sep 2014

this girl went to the er a couple times in july because she felt sick & felt something was wrong.

she was sent home from the er two times

she went to the hospital a week or two ago and they decided to run tests and admit her. finally. that's when she was told she had cirrhosis. and today she begins hospice!

Horse with no Name

(33,956 posts)
66. Not necessarily
Thu Sep 4, 2014, 05:12 PM
Sep 2014

there are rare instances of acute and fulminate liver failure/cirrhosis without pre-existing issues.

If I were her advocate, I would probably start researching there to see if it would make a difference.

In these rare instances, even small amounts of alcohol can precipitate full blown failure.

fredamae

(4,458 posts)
56. And Don't Use MedCannabis
Thu Sep 4, 2014, 01:46 PM
Sep 2014

Even under Dr. Recommendation...
These folks also control and they're Hard Core "gods"
http://unos.org/

Hospitals? Ha!
"In September 2010, Smith became eligible for a liver transplant, but after testing positive for marijuana in February he was removed from the transplant list due to non-compliance with the hospital’s substance abuse contract. Smith was within two months of receiving a transplant before he was de-listed."
http://www.rawstory.com/rs/2012/02/29/medical-marijuana-patient-denied-liver-transplant-its-too-late-for-me/

"The death this week of a musician who was three times denied a liver transplant highlights a new ethical concern: When dying patients need a transplant, should it be held against them if they've used marijuana with a doctor's blessing?

Timothy Garon, 56, died Thursday at Bailey-Boushay House. He was the lead singer for Nearly Dan, a Steely Dan cover-band.

His lawyer, Douglas Hiatt, said that although no one told him why Garon was turned down for a transplant, he suspects it was because he used marijuana with medical approval, as allowed under state law, to ease the symptoms of advanced hepatitis C."

http://www.seattlepi.com/local/article/Pot-eased-suffering-may-have-cost-his-life-1272313.php
http://slog.thestranger.com/2008/05/first_do_no_harm

I almost removed myself from the Donor List because of these "death panels". I called UNOS to discuss it and asked them if they would Use Organs donated From MedCanna Patients and they DO but if you are a legit patient Using MedCanna and Need an organ? You're Screwed!

 

riderinthestorm

(23,272 posts)
59. It's really discouraging when you call the transplant teams "death panels"
Thu Sep 4, 2014, 03:29 PM
Sep 2014

They're not.

Compliance with the requirements is critical to ensure success. The people in your examples would have been kicked off because of eating licorice too. Sound whacky? It's because the anti-rejection meds are extremely intense and the chemistry must be exact. Some innocuous stuff just has a negative interaction. Even salt with the fluid retention is strictly monitored.

Anyone on the lists is told what they can and cannot have. They know that the transplant team lead doctor is the master of their health plan before transplant and if you deviate from their regime, you will be kicked off. Any unapproved cannabis use (from the lead transplant doctor) would do it. Its because of the anti-rejection drug interaction, post transplant, that cannabis isn't allowed, not any nefarious generalized animus towards cannabis.


fredamae

(4,458 posts)
62. Show me the
Thu Sep 4, 2014, 04:18 PM
Sep 2014

credible science regarding cannabis negatively impacting the efficacy of anti-rejection drugs.
I have a very close friend who is deeply involved and on list Waiting for an organ.
No, this person does not use cannabis but wants to and the regular doc would love for this patient to use it-but UNOS clearly told this patient that If they do--they're OFF the list over "concerns" of the interaction with the anti-rejection drugs.
This patient has researched it and while, yes-there is "some evidence of the possibility" of cannabis potentially reducing the efficacy-there is/was zero conclusive evidence.
Federal Schedule One Drug Listing is the reason most often cited.
So, I refer to them a "Death Panels" because, IMO-they have "discouragingly" made life and death decisions based upon incredible evidence and misplaced drug scheduling instead of scientific evidence. I believe it is morally reprehensible to refuse life saving medical treatments to those who are using an efficacious herbal alternative as medicine recommended by their PCP.


 

riderinthestorm

(23,272 posts)
65. Sorry but if there's the slightest possibility that cannabis is going to fuck up a transplant
Thu Sep 4, 2014, 05:06 PM
Sep 2014

Then I agree with UNOS.

Herbs are not innocuous. A PCP is not an expert on organ transplants!

Until it is conclusively proven to do no harm to transplants, then patients should WANT to be fully compliant in order to save their life.

You say it yourself, "some evidence...cannabis possibly reducing the efficacy". That SHOULD be enough for your friend to listen to his transplant team and do whatever the fuck they tell him to in order to survive. The life saving medical treatment for your friend right now is the transplant and to smear UNOS as a death panel is grotesque.

fredamae

(4,458 posts)
68. Then shouldn't these patients
Thu Sep 4, 2014, 05:34 PM
Sep 2014

also be restricted from eating fast food? Sodium rich processed food with all sorts of known nasty stuff in 'em?

Possibility? You know-I'm guessing they already know it isn't a problem. But it Will and Does interfere with brisk sales of very, very expensive drugs.
And if they don't? Given the long, long, long history of medical use-the absolute clinical studies should have Already been published decades ago-shame on them.

 

riderinthestorm

(23,272 posts)
69. Are you really saying that post transplant patients take MJ and not their anti-rejection meds?
Thu Sep 4, 2014, 06:05 PM
Sep 2014

Really?

What. The. Fuck.

Whatever help or hindrance MJ has for a person with an organ transplant, the anti-rejection meds are critical for success. Anything that even has a hint of fucking that up has to go. I have no idea if UNOS has run studies on MJ and transplants. One thing I know for damn sure is that they really, really only want these transplants to be successful. The hospitals are even more invested since their success rates are public. ANYTHING that might help them boost the odds would be fair game for them. Anything. Including MJ I'm sure.

And yes. My sister had extensive meetings with the registered dietitian who was on the transplant team, after every blood draw, to evaluate her diet. CPMC required a daily food log for my sister and that was as strictly evaluated as the drug screen.

Transplants are so rare and an incredible gift. If a person isn't going to treat the process or that gift with the greatest care then they should take themselves off the list.

fredamae

(4,458 posts)
71. Where did I say that?
Thu Sep 4, 2014, 08:03 PM
Sep 2014

I don't believe that at all. Cannabis should be available as a complimentary therapy used With all other treatment, instead of these patients being kicked off the list if they Do choose to use it.
Are you saying they use anti-rejection drugs during treatment Before and while waiting? Or do you infer there are no other medications prescribed for those who are so ill they need a transplant?
My friend certainly isn't using anti-rejection drugs yet-but cannabis could mitigate symptoms of disease and the side-effects of prescribed drugs this person experiences taking these other drugs.

 

riderinthestorm

(23,272 posts)
72. You say it here:
Thu Sep 4, 2014, 09:28 PM
Sep 2014

"But it Will and Does interfere with brisk sales of very, very expensive drugs."

You have absolutely no idea if cannabis has any medicinal effect for anyone with catastrophic liver or kidney problems or if its contraindicated with laculose or dialysis or any other of the most commonly prescribed meds/procedures for those with this kind of organ failure.

Yet you'd RX it without a single documented shred of evidence that it has any effect. Not only that but you're indignant that a SPECIALIST in this field dares to second guess a PCP.

Not only that but you go on to smear these specialists as some kind of "death panel".

You are so very wrong on this its scary. Feel free to have the last word. Your ignorance is frightening and I'm just going to let it hang out there for all to see. The insane need to try to insert MJ into every treatment protocol is bizarre and troubling. You do "the cause" no favors by your grotesque and misinformed assertions.

FWIW , I hate the war on drugs and want to see MJ decriminalized. Im a huge fan of medical MJ. My husband is celebrating his 6th year of remission with Stage IV Grade IV lymphoma so I know firsthand how effective MJ is with chemo.

Transplants however are an entirely different animal and your despicable attempts to denigrate UNOS because of some misguided allegiance to MJ as a cure-all are offensive.

Anyone out there who is still reading I beg of you to consider being an organ donor.

Please.



fredamae

(4,458 posts)
77. That statement is true
Fri Sep 5, 2014, 07:25 AM
Sep 2014

and in no way pin-points to the "anti-rejection" drugs.
Dramatic conclusion?
People are suffering severe illnesses/injury if they need an organ donation. and Many drugs are prescribed to treat and control their symptoms.
And yes, cannabis does and Can compliment other drugs and in some cases can eliminate "some" medications.
I am not a medical dr and I suspect neither are you. I am simply sharing what I have personally seen.
The point I am making and in my personal opinion: The Medical use of cannabis should Not equate to the prohibition of eligibility to receive an organ replacement.

Ms. Toad

(34,074 posts)
76. Sorry, but once you are listed you have been told very clearly what the rules are.
Fri Sep 5, 2014, 01:00 AM
Sep 2014

Your transplant doctor MUST know and approve every medication (whatever the origin) you are taking. And no marijuana means NO marijuana. It doesn't make a whit of difference that some other doctor prescribed it - your transplant doc runs the entire show from the day you are listed. No person listed for transplant has any excuse for believing otherwise.

The success of the transplant, initially, and a lifetime of maintaining a strict drug regimen in order to keep your body from rejecting the liver makes your ability to comply with medical guidance (even if you think it is stupid guidance) critical. If you cannot understand and follow the guidance of your transplant doctor when your life is at risk (because you won't get an organ), there is far less likelihood that you will be able to comply once you have been transplanted and are feeling back to normal.

The reason is that giving you an organ and having you screw up compliance means that 2 lives may well be lost. Yours, and the next person on the list who died because she didn't get the organ they gave you. They are not going to take a chance on giving an organ to someone who has already proven that he cannot even comply with doctors long enough to make it to transplant day, at the time when he is most ill and knows that any slip up could mean a very quick death.

 

MohRokTah

(15,429 posts)
60. There is no law regarding this. It is transplant protocol.
Thu Sep 4, 2014, 03:37 PM
Sep 2014

It can very from region to region, and even hospital to hospital.

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