Sick Atlanta Teen Kept Off Transplant List

[Morag]

Well, Steve Jobs had a slow growing, yet lethal, pancreatic cancer and was diagnosed in 2003 yet didn't die until 2011, so we really can't say that he did or didn't do anything wrong. (5 year survival rate for his cancer is 55%).

His wealth ONLY helped insofar as he was able to get on several different geographical area waiting lists and could be there within the required 4 hours because he had a private plane on stand-by.

True. But he was non-compliant in following the recommendations for treating his initial cancer. He later admitted that he might have survived- and not have wasted that organ he got- if he had followed the advice of his (top ranked, world class) doctors instead of thinking he knew better. And he wasn't 15.

He was an amazing man whose ideas and the ability to sell them benefitted our world. Too bad he died so young, and so unnecessarily.

Was it fair for his wealth to enable him to wait in several lines simultaneously? I don't know.

 

[Morag]

sbm
I'd like to read more from your source. Link pls.

I won't link, but you'll find many sources by googling 'steve jobs' transplant or 'mickey mantle' transplant. My post was from common knowledge, although I did look up the date of his death so see how old The Mick was when he died.

 

[al66pine]

In the UK we had George Best, similar story:
http://news.bbc.co.uk/1/hi/uk/2161540.stm ....

sbm

Liver is not his only prob., seems deficient in vitamin M (modesty) or overdosing w vitamin SI (self importance)?
.
"But I have been waiting for almost eight months now and have cancelled holiday after holiday." from^ link.
.
Poor thing. Cancelled holiday after holiday (multiple). He could have taken his holidays as scheduled,
if only those people had been considerate enough to die earlier.
JM2cts, w a little sarc thrown in.

 

[al66pine]

The controversy was about Cheney's age when he received his heart transplant. I guess he played the "vice president card."
JMO
At age 71, Cheney was older than the average heart transplant patient; while there is no firm age limit for a heart transplant, most transplant surgeries are done on patients younger than 70 years old.
http://www.forbes.com/sites/kellyph...rs-health-care-debate-who-lives-and-who-dies/

If post is implying Cheney played "vice president card" to get heart transplant, post does not support that.
(Not saying he did not play the card or use influence. Possible, perhaps likely, perhaps Ivory Soap certain - 99.44%. IDK.)

Stmt "I guess he played the "vice president" card" suggests - sarcastically? -
1. he used VP influence to get heart, and he could not have otherwise gotten it.
2. other 71 y/o ppl could not get heart transplants, or would not h/bn likely to get them.

But linked quote after VP card stmt clearly refutes that implication, by stating:
- "no firm age limit for a heart transplant."
- "most transplant surgeries are done on patients younger than 70 years old." Not all.

If he had bn 101 or 91 y/o, the quote could support VP card implication. If 81 y/o, somewhat support.
Nothing in quote or other sources I've read suggests 71 yr is far outside acceptable age.

JM2cts.

 

[EllieBee]

If post is implying Cheney played "vice president card" to get heart transplant, post does not support that.
(Not saying he did not play the card or use influence. Possible, perhaps likely, perhaps Ivory Soap certain - 99.44%. IDK.)

Stmt "I guess he played the "vice president" card" suggests - sarcastically? -
1. he used VP influence to get heart, and he could not have otherwise gotten it.
2. other 71 y/o ppl could not get heart transplants, or would not h/bn likely to get them.

But linked quote after VP card stmt clearly refutes that implication, by stating:
- "no firm age limit for a heart transplant."
- "most transplant surgeries are done on patients younger than 70 years old." Not all.

If he had bn 101 or 91 y/o, the quote could support VP card implication. If 81 y/o, somewhat support.
Nothing in quote or other sources I've read suggests 71 yr is far outside acceptable age.

JM2cts.

Also, if I recall correctly, he quit his 3-pack-a-day smoking habit YEARS before being placed on the list.

So Cheney was trying to amend those dangerous habits which likely contributed to his heart disease. AND he DID have the money needed for follow-up care. Which is crucial. He did everything right in order to be a transplant candidate.

 

[MyBelle]

If post is implying Cheney played "vice president card" to get heart transplant, post does not support that.
(Not saying he did not play the card or use influence. Possible, perhaps likely, perhaps Ivory Soap certain - 99.44%. IDK.)

Stmt "I guess he played the "vice president" card" suggests - sarcastically? -
1. he used VP influence to get heart, and he could not have otherwise gotten it.
2. other 71 y/o ppl could not get heart transplants, or would not h/bn likely to get them.

But linked quote after VP card stmt clearly refutes that implication, by stating:
- "no firm age limit for a heart transplant."
- "most transplant surgeries are done on patients younger than 70 years old." Not all.

If he had bn 101 or 91 y/o, the quote could support VP card implication. If 81 y/o, somewhat support.
Nothing in quote or other sources I've read suggests 71 yr is far outside acceptable age.

JM2cts.

My point is that somebody who needs a transplant is going to play whatever card they need to get to the top of the list, whether it be the VP card or the baseball legend card or the race card. It happens. The vitriol being directed at this teen's family is over the top.


JMO

 

[al66pine]

Just for fun, decided to try to drill down to nitty gritty re fed rules & regs re organ procurement & donation.

IIUC,
- following applies to med centers/hosps performing organ transplants & receiving Medicare or Medicaid funds.
- fed. standards (X052 Patient Selection; X053, Psychosocial Evaluation) had already been adopted by HHS,
- this memo announces 'Interpretive Guidelines' about written policies transplant centers must develop.
- w'in these ^guidelines, ea transplant center sets written policy for transplants performed there
- develops criteria for selecting transplant candidates.
- before putting patient on list, transplant centers are required (gen'ly) to make psychosocial evaluation.

Hoping some of our medical professionals can offer correction or clarification, to my interp of what this applies to. Linked to this, w my bolding and underscoring:

http://www.cms.gov/Medicare/Provide...ulations/Transplant-Laws-and-Regulations.html

http://www.cms.gov/Medicare/Provide...oads/SurveyCertLetterSOMandSurveyProtocol.pdf

Letterhead = Dept. of Health & Human Services / CMS

Date: June 13, 2008
To: State Survey Agency Directors
From: Director / Survey & Certification Group
Subject: Advance Copy - Organ Transplant Program Interpretive Guidelines

[effective date 30 days after memo date]


Advance Copy - Subpart E – Requirements for Specialty Hospitals
----------------------------------------------------------------------------------------------------------------
Attachment A: Organ Transplant Surveys, Interpretive Guidelines

Transplant Center Process Requirements [starting on page#: digital=30; hard copy= 27]

X052
(a) Standard: Patient Selection. Patient selection criteria must ensure fair and non-discriminatory distribution of organs.

Interpretive Guidelines
Review the transplant program’s written transplant patient selection criteria. The selection criteria (medical, psychosocial, financial, etc.) must clearly define the characteristics of the patients for whom the program will and will not provide transplant services. These criteria may not exclude groups of individuals based on factors such as race, ethnicity, religion, national origin, gender, or sexual orientation.
Please note, there are factors that some transplant programs can and do use in their patient selection criteria including age, ability to pay, ability to adhere to immunosuppression regimen, presence of an active infection, etc. Consideration of these types of factors is permissible.

Review the complete list of the transplants performed by the program within the last 3 years or June 28, 2007, whichever is most recent. The list should include, at a minimum: name, address, country of primary residence, resident alien or nonresident alien status, race, and gender. Compare the transplant program’s patient selection criteria and the list of transplants performed for the last 3 years for any patterns that suggest the program’s selection criteria are not being followed.
Include questions in the interview process of transplant program staff to verify that the transplant program’s policy is being followed.
If patterns of discriminatory distribution of organs by the program are identified, contact the appropriate CMS Regional Office for further instruction. Such patterns may indicate that the national organ allocation (OPTN) policy is not being followed appropriately. Each organ allocation is reviewed by the OPTN. It is outside the scope of this survey to determine whether a specific organ that became available should have been matched with a specific transplant recipient on a transplant program’s waiting list, or whether another person on the waiting list should have received the organ.

X053
(1) Prior to placement on the center’s waiting list, a prospective transplant candidate must receive a psychosocial evaluation, if possible.

Interpretive Guidelines
Review the written patient selection policy to verify that it contains a requirement for a prospective transplant candidate to receive a psychosocial evaluation by a qualified healthcare professional PRIOR TO PLACEMENT ON THE WAITING
LIST. The policy is expected to (1) indicate the length of time in which the psychosocial evaluation is deemed to be current, (2) identify the qualified healthcare professionals who may complete these evaluations (it is expected that these professionals would have knowledge of transplantation), and (3) include the follow-up and referral procedures if a transplant candidate requires such activities.
While the transplant program has flexibility in the specificpsychosocial tool to be used, the psychosocial evaluation is expected to be completed and to be focused on the individual’s suitabilityfor transplantation. It is expected that a psychosocial evaluation of this nature would be conducted by transplant program personnel and would address the following: 1) social, personal, housing, vocational, financial, and environmental supports; 2) coping abilities and strategies; 3) understanding of the risks and benefits of transplantation; 4) ability to adhere to a therapeutic regimen; and 5) mental health history, including substance or alcohol use or abuse and how it may impact the success or failure of organ transplantation.
The psychosocial evaluation is expected to be age appropriate. Similar to psychosocial evaluations in other areas, in cases of young pediatric patients, the evaluation would include interviews with the parents/guardians.
Verify in the sample of post-June 28, 2007, transplant recipient medical records that the psychosocial evaluation
was completed by a person authorized under the program’s policy before that potential recipient was placed on the UNET and transplant program’s waiting lists. UNET is the secure Internet-based transplant database operated by the contractor for the OPTN (UNOS) for the nation’s transplant programs and Organ Procurement Organizations to register patients and donors on the waiting list and for transplantation. In each case, if a referral was made for further psychosocial evaluation before it could be determined whether an individual was to be placed on the UNET waiting list, verify that additional evaluation was completed as required by the transplant program’s policies and procedures for follow-up and referral.
It is expected that in nearly all cases, a psychosocial evaluation is possible and should be conducted as part of the determination of whether or not someone would be a suitable transplant candidate. There arerare or emergency situations when a psychosocial evaluation cannot be completed prior to transplantation due to the patient’s medical condition and with the absence of family or others that can provide information/insight into the psychosocial history of the patient.
In such cases, verify that documentation is included in the transplant patient’s medical record that describes the reason a psychosocial evaluation was waived or unable to be completed, due to the need for emergency intervention or exceptional circumstances and that no family or others were
available to address the psychosocial history of the patient. Examples of these exceptional or emergent circumstances may include untreatable encephalopathy, massive liver trauma, and acute (fulminant) liver failure (e.g., Tylenol overdose, mushroom poisoning).

 

[al66pine]

My point is that somebody who needs a transplant is going to play whatever card they need to get to the top of the list, whether it be the VP card or the baseball legend card or the race card. It happens. The vitriol being directed at this teen's family is over the top. JMO

"Whatever card"
Yes, agreed, ppl will play whatever cards are avail.
I understood the VP card post implication to be - Cheney w/not have gotten heart unless he was played VP card.
I did not see that as necessarily true - that simply because of his age, he w/be crossed off the list at age 71.

My point - ppl playing whatever cards, who do not meet med criteria & pass psychosocial evaluation to make the list,
should not get on the list by exception, simply by making big noise in MSM or SM.

"Vitriol"
I sense vitriol expressed is because of my above point.
Esp when in hindsight, ppl see -
- Stokes' Mother shaded the truth, at best, about his behavior, or exaggerated, or outright lied - to get exception.
- his juvie /crim records were disclosed or leaked after his death, and he was not quite a model citizen.
- med center was not lawfully able to publicly respond to her accusations of racism, etc. And still cannot.

JM2cts and I maybe wrong.

 

[MyBelle]

"Whatever card"
Yes, agreed, ppl will play whatever cards are avail.
I understood the VP card post implication to be - Cheney w/not have gotten heart unless he was played VP card.
I did not see that as necessarily true - that simply because of his age, he w/be crossed off the list at age 71.

My point - ppl playing whatever cards, who do not meet med criteria & pass psychosocial evaluation to make the list,
should not get on the list by exception, simply by making big noise in MSM or SM.

"Vitriol"
I sense vitriol expressed is because of my above point.
Esp when in hindsight, ppl see -
- Stokes' Mother shaded the truth, at best, about his behavior, or exaggerated, or outright lied - to get exception.
- his juvie /crim records were disclosed or leaked after his death, and he was not quite a model citizen.
- med center was not lawfully able to publicly respond to her accusations of racism, etc. And still cannot.

JM2cts and I maybe wrong.

We don't make the decisions who gets on the list and why. If they pull a card, they pull a card, whatever it may be. It doesn't matter to me that the boy's mother lied to get him on the list. She's lost her son.

JMO

 

[K_Z]

One of the most significant things that occurs to me, as I ponder this entirely tragic situation, is what happened AFTER the first facility disqualified AS for the heart transplant, in 2013 when he was 15. There are many debatable issues with the "morality" of donor and recipient situations, and there have been a number of scholarly studies and textbook chapters written about moral issues of organ transplant.

There are at least "several" easily accessible thought experiment debates online, where surgeons discuss whether or not they would be willing to operate, or re-operate, in a given situation involving serious patient non-compliance. "Morality" discussions philosophically explore three key concepts: utility, justice, and autonomy. Social worthiness and compliance is a relevant part, but not all, of the issues of utility. Some bioethical medical philosophers feel social worthiness and compliance should never be explored or considered; others argue that social worthiness and compliance is essential to the concepts of utility and moral decision making, and overlooking/ ignoring social worthiness is immoral in and of itself. (As well as violating concepts of justice, the second area of morality.)

So having said all that, it's important to remember that the original decision that disqualified AS from the transplant list involved probably more than 25 individual professsionals. It was never a simple decision of "just" the surgeon, or "just" a few individuals, despite how the mother may have presented it. In many facilities, a decision to disqualify a patient from a certain treatment that is felt to be significantly life enhancing or life saving, requires review by a bioethics committee, at a minimum. Certainly pediatric decisions to disqualify (and AS was a pediatric patient at age 15 in 2013) would have to be reviewed. So, my point here is that MANY professionals participated in the qualification evaluation of AS, and all reached the same conclusion in 2013-- that he was a poor candidate, and should be disqualified at that point in time.

So, the really disturbing thing to me, as a health professional, is "why" didn't the facility stand by their decision, and do the ETHICAL and MORAL thing, which would have been to REFER the patient to ANOTHER 1 or more facilities and physicians for RE-evaluation?? The fact that the original hospital reversed course and caved in to a social media campaign orchestrated by the mother and race activists, is very worrisome, on a number of levels, IMO. If I think like an administrator, the "caving in" is actually a MUCH more legally vulnerable position than making a referral to new providers and a new facility. I believe that the right course of action should have been referring that 15 yo patient and family to a new provider team, at a new facility, for another evaluation-- AND making sure the family had the support to follow thru with the new eval and referral (social services for transportation, lodging, etc). This teen's case is exactly the kind of panel discussion health professionals encounter at professional meetings/ conferences. This teen should never have been served by the same facility and physicians that originally disqualified him for transplant. That alone is hugely worrisome, IMO. Just imagine the potential liability if there were complications during his care there after the DQ.

The family should have been offered the opportunity, and encouraged, to transfer to another facility and another team of physicians, IMO. That referral process COULD have possibly saved his life, if it removed him from the social circumstances that were encouraging his life of crime and health non-compliance, IMO. It's a long shot, but it might have saved HIS life, as well as prevented him from harming others by his life of criminal activity. A juvenile sentence that put him in juvenile detention custody could have also accomplished the same thing-- saved his life, give him an environment to try to start over, and prevent him from harming others. This teen fell thru the cracks at every turn, IMO. The system failed him, even after his mother successfully campaigned for him to get a new heart. The new heart was the least of his problems, IMO.

And yes, I'm definitely saying he should have been "turfed" to another facility and team, and probably put in juvie detention/ jail, at age 15, when he was determined to need a transplant, and was in serious trouble with the law and school. Either, or both of those things, could have interrupted the cycle of his dysfunctional criminal life to the point that he could possibly have lived longer than 24 months after a transplant (and not hurt anyone else with his behavior).

Maybe that's all a moot point now, given what he has done in the past 24 months or so. But the health care professional in me wants to debrief the entire situation and explore what happened, from the perspective of learning what went wrong, and better ways to handle a similar situation next time. Because there WILL be a "next time".

 

[Donjeta]

What a sad story all around.

I have a family member who is waiting for a lung transplant. Pretty sure she wouldn't shoot anybody if she got it.

 

[al66pine]

We don't make the decisions who gets on the list and why. If they pull a card, they pull a card, whatever it may be. It doesn't matter to me that the boy's mother lied to get him on the list. She's lost her son.
JMO

bbm ubm

No, we Websleuthers don't make decisions about who makes transplant lists or why.
In this case, I believe his mother's lies to others & SM persuaded ppl in 'activist groups'
who in turn used SM to gain MSM coverage to bring these lies to attn of gen public.
Then MSM coverage brought so much pressure/influence/heat (whatever) to bear,
that person(s) on transplant committee* made exception to patient selection criteria to put him on the list.
IOW, transplant center/hosp made exception in face of public outcry, based on lies, imo, jmo, moo.

From another perspective -
if half of patients, applying for transplant but not placed on list did the same thing as his mother,
lied to make the list, that would not matter to you, because you are not directly personally affected?
If you or loved one on same list got pushed down 20, 50, 100, 200, or 1000 places,
would those lies matter to you then, when you are directly, personally affected?

If hosps & transplant centers spend time & money w these 'exception' requests based on lies from half the initially-excluded patients, wouldn't fewer organs would be transplanted?

I am grateful that neither I nor loved ones are applying for an organ transplant.
If that day comes, I hope I would respect the process & not lie to create a media circus to make my way onto the list.
All imo, jmo, moo.

___________________________________________________________________________________________
* maybe not that committee specifically, maybe senior administrator(s) and/or hosp/med center board members.

 

[Morag]

From al66pine's post 107:

Please note, there are factors that some transplant programs can and do use in their patient selection criteria including age, ability to pay, ability to adhere to immunosuppression regimen, presence of an active infection, etc. Consideration of these types of factors is permissible.

Some transplant programs use these criteria. One of the criteria (or should it be criterion?) is age. Is age always a negative factor- too old for a transplant? Or can age be a positive factor?

Even a lackluster 15-year-old is quite likely to get several decades of use of one of those precious hearts. And we can't very well say, oh, give that wretched teenager the death penalty because he's a purse-snatching, pot-smoking, school-skipping bad seed. Even a child with problems and perhaps little promise is worthy of saving. And Anthony apparently followed the protocols well enough to be well and active two years later. Too bad he died before he grew up enough to redeem himself.

The fact that 'ability to pay' is one of the criterion indicates that a rich person will get a heart one way or another. Even if he/she is evil. And frequently an older person with heart problems is somewhat to blame for them. Smoking, drinking, overeating, etc, and suddenly, OMG- I need a new heart! Those people made their mistakes as adults. Should we investigate the character of every transplant candidate? Cuz if we did, very few people would be noble enough to qualify.

 

[EllieBee]

From al66pine's post 107:




Some transplant programs use these criteria. One of the criteria (or should it be criterion?) is age. Is age always a negative factor- too old for a transplant? Or can age be a positive factor?

Even a lackluster 15-year-old is quite likely to get several decades of use of one of those precious hearts. And we can't very well say, oh, give that wretched teenager the death penalty because he's a purse-snatching, pot-smoking, school-skipping bad seed. Even a child with problems and perhaps little promise is worthy of saving. And Anthony apparently followed the protocols well enough to be well and active two years later. Too bad he died before he grew up enough to redeem himself.

The fact that 'ability to pay' is one of the criterion indicates that a rich person will get a heart one way or another. Even if he/she is evil. And frequently an older person with heart problems is somewhat to blame for them. Smoking, drinking, overeating, etc, and suddenly, OMG- I need a new heart! Those people made their mistakes as adults. Should we investigate the character of every transplant candidate? Cuz if we did, very few people would be noble enough to qualify.

You make an excellent point. Thank you. I hadn't thought of it like that.

 

[jjenny]

From al66pine's post 107:




Some transplant programs use these criteria. One of the criteria (or should it be criterion?) is age. Is age always a negative factor- too old for a transplant? Or can age be a positive factor?

Even a lackluster 15-year-old is quite likely to get several decades of use of one of those precious hearts. And we can't very well say, oh, give that wretched teenager the death penalty because he's a purse-snatching, pot-smoking, school-skipping bad seed. Even a child with problems and perhaps little promise is worthy of saving. And Anthony apparently followed the protocols well enough to be well and active two years later. Too bad he died before he grew up enough to redeem himself.

The fact that 'ability to pay' is one of the criterion indicates that a rich person will get a heart one way or another. Even if he/she is evil. And frequently an older person with heart problems is somewhat to blame for them. Smoking, drinking, overeating, etc, and suddenly, OMG- I need a new heart! Those people made their mistakes as adults. Should we investigate the character of every transplant candidate? Cuz if we did, very few people would be noble enough to qualify.

If you ask me, he was much too active. That's a lot of alleged criminal activity he couldn't have participated in if the new heart didn't give him all the energy. Stolen car, an elderly woman who says he broke into her house and shot at her, and a pedestrian who got hit and is in the hospital with multiple broken bones. When exactly was this guy going to get to "redeeming himself?"

 

[al66pine]

[QUOTE=Morag;11659065] Even a lackluster 15-year-old is quite likely to get several decades of use of one of those precious hearts. And we can't very well say, oh, give that wretched teenager the death penalty because he's a purse-snatching, pot-smoking, school-skipping bad seed.... [/QUOTE] bbm sbm

Did transplant center's initial failure to put him on list "give him the death penalty"? Is that accurate?
Or
Did Stokes' ~summer 2013 med. condition 'give him the death penalty' (drs. predicted ~few mo? or ~few yr?)?

Does transplant committee/center have power & resources to save a person from death penalty?
IIUC that is or may be accurate only as to one patient at a time.

Demand for hearts .......... > ... supply of hearts.
Number of heart donors ...< ... number of hearts needed for ppl on waiting list.
True for ea heart transplant center, regionally, nationally (and true for organs as well) IIRC.

Every person on list & every person not on list has a 'death sentence.' (Ditto the rest of us, everyone on earth)
The transplant center did not 'give the death sentence' and cannot 'save' all on list from the 'death sentence.'
Unfortunately, it's the hard, cruel math of supply & demand for hearts & other organs.

Condolences to his mother for son's death at such a young age & hoping someday she can find peace. RIP Anthony.

 

[al66pine]

[QUOTE=Morag;11659065]....The fact that 'ability to pay' is one of the criterion indicates that a rich person will get a heart one way or another. Even if he/she is evil.... Should we investigate the character of every transplant candidate? Cuz if we did, very few people would be noble enough to qualify.[/QUOTE] bbm sbm

The above fed regs (my post 107, April 4) re patient selection criteria enumerate various criteria as permissible,
including "age, ability to pay, ability to adhere to immunosuppression regimen ..."

Does a patient's ability to pay
- trump all other permissible criteria re patient selection?
- make the psychosocial evaluation irrelevant?
- induce transplant committee to ignore patient's lack of -
"1) social, personal, housing, vocational, financial, and environmental supports;
2) coping abilities and strategies;
3) understanding of the risks and benefits of transplantation;
4) ability to adhere to a therapeutic regimen; and
5) mental health history, including substance or alcohol use or abuse and
how it may impact the success or failure of organ transplantation."

Respectfully imo, ability to pay as one patient selection criterion does not indicate,
a rich person will get a heart one way or another.
Too many other factors for $ to conquer trump them all, imo.

Is it possible that a particular rich person might somehow slither onto the list, e.g.,
- Steve Jobs? IDK.
- Mickey Mantle? IDK. His liver transplant was in done 1995. IIRC, before the above fed regs were in effect.
IDK whether he would be placed on list the same way it was done 20 yrs ago.

Investigating character of potential candidates?
The psychosocial evaluation, IIRC, is geared toward predicting whether the heart transplant candidate
will comply w medical orders, in turn providing better quality of life and longevity.
Ppl known not to comply - not taking meds, not attending apptmts - before transplant are,
not likely to comply after surgery, so should not be selected for transplant lists, if shown in psycho-eval, imo.

Should only the 'noble' qualify for transplants?
Respectfully, I doubt transplant centers are measuring (or trying to) 'noble' in selecting transplant candidates.
OTOH, if anyone runs across that, I hope it gets posted here.

JM2cts and I could be wrong.

 

[joypath]

Very interesting comments ALL.....and now to add an EXTREMELY relevant point: just being on "the list" does NOT mean that an organ will be going to you! Having sat on these committees (ethics, transplant, morbility & mortality) @ various times in my career, these decisions are NOT single factor based as I'm sure all commenting here recognize (general public, not so much!).

One wicked important detail is the donor to recipient compatibility: "back in the day" there were not as many biological "markers" that were D-R matched, another extremely important detail in patient "ranking" on the list is actual, current medical condition and geography as that effects organ viability.

K_Z posted above an awesome collection of thoughts, very in-depth analysis or what may/might have occurred/happened and some points to ponder regarding agency (hospital, transplant coordinators, medical staff, etc) possible future behaviors to LEARN & CORRECT, if needed, actions from this publicized case.

I "assuming" that there will be a document created & ultimately presented in/at professional meetings to "tease out" the details of this case and possibly generate an impartial study of similar cases/or those like MM, SJ, wealthy "rock stars" or even past Vice Presidents & others still living. Sounds like a great PhD thesis topic!

 

[atthelake]

I had no idea that this young man had passed as had not kept up on threads.

:rose:

 

[MsFacetious]

This story makes me sick because of 2 specific people.

My childhood best friend had CF.
There is a woman I am aware of who has had TWO double lung transplants despite having CF.

My childhood best friend always did everything she could to manage her CF.
She married a man without CF at 22 years old and worked as a nanny.
At 27 years old they decided to adopt as pregnancy would be too hard on her.

They adopted a beautiful little girl and her dream of being a Mom came true.
She had a couple fairly good years before she went downhill.
She said that even though she was sicker than ever, she was living the dream because she was a Mom.

When she started to go downhill she qualified for a lung transplant.
She REFUSED it because she knew it would only give her a few years.
She knew that there was someone else out there who would be able to use it more.
She died last year at 30 years old... with no criminal record or history of addiction.
I am not convinced I would have the strength to turn it down like she did. :twocents:

My daughter would not qualify for a transplant of any kind because she has Down syndrome.
I have never quite understood this, since we do transplants on babies.
Her being unable to handle her own medical care excludes her, but not babies.
She is extremely healthy, has no underlying health issues... it's just the Down syndrome that would exclude her.
It's always mystified me a little bit but I just hope I never have to worry about it.

However, we are aware of the facts and the plan is that we would have a living donor if she ever needed a transplant.
Hopefully it would be something that a living donor could do.
She is extremely healthy, active and smart so I think we will be just fine. :seeya: