A Challenge to ALL

I'm not someone who's usually comfortable telling people what to do, or challenging them to do things, but a number of recent posts have made me feel it's appropriate to put this one out there:

If you are already signed up to be an organ donor, I applaud you -- join me and tell people how easy it is to sign up.  If you are not, I encourage you to consider doing  so.  It takes almost no effort on your part (no pun intended), and it can save a life... or two... or three... or more.  In many states you can simply indicate you'd like to be one when you renew your driver's license.  There is also a 'Universal Donor Card' alternative that can be carried in your wallet if you do not drive, or do not want to do it 'via government.'

For those who'd like general information about being a universal donor and links to what organ donorship is all about, a beautiful starting point:
http://www.loveandlightwings.com/awareness/organdonorship.html

Now, that's some real support for hepatitis sufferers :).  ~eureka

[speed502]

I was an organ donor all my life but thought as a 'former hepper' I was no longer eligible and did not sign up last DL renewal. Guess I'll have to recheck the rules and if I can I will surely do so. Thanks for the reminder.

[child24angel]

I have been a donor for years..good thread !
All my best as always  Eureka.

Speed, you can still be an organ donor, I don't know what state
you live in, however in some states you can sign up on-line.
In addition, yes you can have the dot on your DL.
Good luck Speed

If needed,  the TP center doesn't like to do it,
they can TP a HCV liver in a HCV recipient who also has HCV, this would be
in an extreme case where there is no other choice.

[nygirl7]

I think Mikesimon straightened me out on this one we cannot donate blood but we CAN donate organs.  I'm pretty sure I had it wrong too and thought I could no longer be a donor......I'm not sure how much of my liver is left to give but if I die certainly it'd be better than nothing I suppose!

Of course that is not the only stuff we have why do I always have to think liver liver liver liver LOL.

I applaud this thread!

[Diane12855]

Good idea to put this out there. May be that lots of people on here don't think we have anything that can be used anymore.

Sign up everybody!!!!!!!

Diane

[mikesimon]

Good thread.
Thanks,
Mike

[CoStudy]

I have been a donor all my life. Everybody should be.
There are 524 people on the waiting list for a liver in Colorado alone.

[eureka254]

Really, anyone who is "of sound mind and body" can elect to be an organ donor.  So yes, heppers, you can all sign up :).  

The limitations of what we can donate I think really boils down to informed consent from the recipient (and please, if I'm incorrect here, legal eagles feel free to descend):  if the intended recipient (either by signature or by proxy/POA) gives consent, it's possible to receive a transplanted liver that is hep c positive if no other is available.  My thinking is if it were my liver (or another essential organ) failing and my choices were possible death or survival with hep c, I would be thankful for the organ, virus or not.  

But then again, (though I would hope not) I'm sure there's also a number of people that are so devastated by this disease that they would rather no one ever be infected under any circumstances...

[sunqueen]

Errrr. Ummmmmm. Uhhhhh.

Always getting pitched by harvesters because they know we're the people talking to those who are fixing to go meet jesus soon. It's a big buck business. They make a determination based upon the cause of death when they receive a ........a gift. Some causes of death (like a bad ticker) will allow most of the organs to be harvested for donation. Other causes of death (like, say, cancer) won't be harvested for donation (except the corneas) because they will not place "contaminated" organs in a recipient. Cancer cells are considered mutations. Those cadavers are shipped off to research facilities and medical schools. Any donors exposed exposed to HCV, HBV or HIV are incinerated. They feel the risk is far too great.  I was spitting mad and had a case of the vapors the last time I had to sit in on one of these presentations.

Oh hey. Every donor gets a free cremation to help ease the financial burden to their loved ones left behind, and a sense of knowing they "done good." The harvest corporation makes tens of thousands off of each donation.

[carol411]

I lean toward sunqueen's thoughts.  Many years ago I had the donor designation on my driver's license.  I was living in Portland, OR.  Some rich people went mushroom hunting.  Unfortunately what they picked were toadstools.  Their livers failed.  One died and two got immediate liver transplants.  One of the side bars in the paper was of people who had been waiting months or years for a liver to save their lives.  I was so offended that I took the designation off my license.  I may have to rethink this, it never occured to me that any one could still use my organs.  I still think the rich have the advantage in any medical situation though.

[can-do-man]

Good thread eureka, i have always signed up for being a donor, it really doesn't matter to me if a rich person or a poor person recieves anything i got. i wouldn't want someone not to live cause i'm jealous.......... Hmmmm

[carol411]

It's not jealousy.  Someone who was in pain and waiting in line could have died.  I am really rethinking my position.  I will probably do the right thing.  

[annieCinMD]

I thought I had to take my name off the list until somebody put it up on this forum that that is not the case. I am still an organ donor and still hcv positive. Good thread.

[eureka254]

sunqueen:  "Errrr. Ummmmmm. Uhhhhh."
Huh?  (Conflicted?  Apathetic? Offended?)
Perhaps you are uncomfortable with the fact that both judgments and profits are made during the organ donation process.  It's a unfortunate reality of life (and death) that any such process will be fraught with imperfections (including but limited to greed), but I don't fault the goal for the processes.  Yes, it IS big business if you want to see it that way -- but that's business as usual, isn't it? Most medical practices, hospitals, as well as pharmaceutical companies ARE about the "big bucks" -- but does that mean you don't visit doctors, go for treatment when needed, and use expensive medications because they're in it for the profit?

Maybe the particular presenters you've seen have their own policies, but I don't believe all parts of all hcv, hbv and hiv bodies are incinerated by every such agencies.  I don't know if your anger has prevented you from being an organ donor, but I hope not.  From where I stand, if my untimely demise were to benefit in saving someone's life, harvesters making a huge profit wouldn't really make much of a difference to me, nor would I think it would to the recipients and their loved ones. And if I can ease the financial burdens of my loved ones when I go, all the better :).  Respectfully, eureka.

can-do-man:  I always think it's interesting to hear why people choose not to be an organ donor, the reasons are so personal and so varied...

[eureka254]

The above should say * (including, but NOT limited to greed)

[child24angel]

I agree with you. I guess it's a personal decision, however
being rich or poor should not be a reason.

SQ, at the TP center, they told me they could put a HCV liver
in my son since he already had HCV....that would have been
the last resort.  

I know Steve Jobs got a liver TP and is doing very well.
He did have a private jet to take him places.  He did the
smart thing and listed in more then one state/region.

I was going to do the same for my son, but he could not
travel he was too sick.  Well, that and I don't own a private jet:(
You have to be ready to go within a 1-2 hour window if they find
a liver.

I think if anyone is able to travel , try and list in other states.

I still say..give. and in some cases, a gift of a precious life..

[spectda]

If everyone were a donor, there would be enough organs for a very high percentage of the people who need them, rich or poor, whatever religion, whatever color, whatever age, whatever period.

All the reasons people find to want to keep the organs after death in my opinion are nonsense. Sorry to offend anyone, but even if there is a slim chance of saving someone, what do you plan on using your organs for after death. come on now!

Defending reasons for not donating, or just plain laziness is exactly why we don't have enough organs. I am sure if you get to the point where you or your loved one needs an organ and can't get one you will see the point. It's easy to intellectualize and speculate until your faced with the real possibility death a short time away.

There is non excuse to not donate, don't convince yourself there is!

- Dave

[carol411]

Upon reflection my two posts on this thread don't made sense even to me.  I searched the archives of The Oregonian to find out what would make me, a person registered as an organ donor since I was old enough to do so, become so angry that I took my name off the list.  I found that in September of 1988 Oregon stopped all funding for transplants for Medicaid patients and in October of 1988 there was a media circus about four liver transplants for people who had picked poison mushrooms to put in a stir fry.  Lear jets were used to fly two of them to San Francisco for transplants.  Much was made of the ability for some to live and not others.  But that was then.

Now, Dave is right, there is no reason not to donate.  Now there are very rigid rules and ranking to assure organs are distributed by need.  It may seem like celebrities can sashay in and replace an organ at will, but that is not so.  They wait like everyone else till their need is the greatest for an organ of the right size and type.  They don't get to jump in line.

So I have been wrong headed all these years.  In my defense, my opinion has done no harm (except for posting a stupid and uninformed opinion), I'm not finished with my organs yet.  I will be signing up again, though I'm astonished that they may be useful.  The need for organ donation is great and it's a darn shame that there are probably many people who, like me, aren't aware that changes in the last twenty years have made the process as fair as it can be.

I am sorry for my first two posts.  I will make more of an effort to know what I'm talking about before venturing an opinion from now on.  

Carol

[eureka254]

Oftentimes we let our outrage at the details get in the way of the best road ahead.  Your honesty and candor are a good thing: it allowed us to foster discussion about our differences in opinion, and I'm gratified that you are reconsidering your position.  I'm not sorry that you posted what you did :).  With warm regards. ~eureka

[spectda]

Hi Carol-
My post wasn't really directed at you, just the world at large I suppose.  It takes guts to get on the forum, consider the information and be willing to change your mind if that is how you really feel. i don't mean to offend, I just personally feel very strong about the donor program and very sad that most everyone is not willing to be a donor. There are so many people dying and suffering unnecessarily.

I had lunch with my son today and asked him if he was a donor (he is 22) he said yes, I was so proud of him for making that decision!

Have a good one,
Dave

[carol411]

Hi Dave,

I did not take offense.  It did make me wonder about my strong opinion, held for years, that so many disagreed with.  So I spent some time in newspaper archives and some time investigating how they decide who gets organs.  It turned out my opinion was outdated and wrong.  I'm used to it :)  I was a city person all my life and my husband moved me into ranch country.  I have found many opinions that I held dear have been formed without all the facts necessary to even have an opinion.  Cougars are beautiful and I hate to see them killed, but when one was down the block chewing on a friend's beloved dog I had to examine my firmly held belief that no wild life control was unnecessary.  There are many such awakenings in my life and I am happy for them.

Good night,
Carol

[carol411]

And I'm happy you opened a discussion that gave me the chance to examine a prejudice and put it away.  

Hugs,
Carol

[speed502]

I don't know if this is true but after reading some of the comments concerning transplant eligibility I dug out an old news clipping I saved a few years ago. It was a comment in the editorial section stating that a 56 year old patient who used doctor prescribed marijuana to ease his pain and nausea while waiting for a liver transplant died after "a hospital board at the Univ. of Washington Medical Center cited the patient's use of this illicit substance as grounds for keeping him off the transplant list". I find this rather hard to believe. I never heard of anyone being denied due to alcohol abuse. Has anyone else here heard of such a thing?

[spectda]

I read on the board here about the denial of a liver for marijuana use, it's very sad and in my opinion even more reason it should be legal. I believe that if a person destroyed their liver because of alcoholism, they can still get a TP, but if they are actively drinking they most likely be denied.

I would guess they people who have been through this know for sure what the requirements are.

[child24angel]

The reason for denial varies from state to state
The board is usually part of the TP team.

They would ideally like to put a healthy liver in someone
who isn't using drugs/alcohol. Their reasoning is because
there are many people who need livers  as you know.

They would like to have a perfect candidate for that liver
and not someone who is going to turn around and start
drinking/using again.  

They do blood /urine test at random if they want.

My son didn't use drugs nor alcohol not ever (health nut). He was labeled the "perfect one" at the TP center, except for his hemophilia , which wasn't supposed to hinder him.
They still had to test him for drugs/alcohol per their protocol.

There are many things that go in to the evaluation process
and this is one of many.  

My son was number one on the list in this region however,
two people were transplanted before him, because of blood type
or other things , they were waiting for a perfect healthy liver for him.
They have to make a match as best they can.  With limited livers to go
around this process some times doesn't seem fair.

If you compile that with some one who is actively drinking and/or using
you can see how they reason that out.  I wouldn't think marijuana would have
such a negative impact , but I never had that discussion with the team.
I only know what Nick and I were told.  No smoking, drinking or drugs of
any kind.  Nick never made it, however was on the list for a few months.  It was very stressful trying to get him listed at a MELD of 15..then he just went downhill every week.

Maybe others who have received a TP can offer more information.

It all comes down to needing more Livers.....keep donating organs
and safe a life.

[eureka254]

Yes, I remember the headlines, a musician on the West Coast -- it caused some public outcry because in that particular situation, the man that was declared ineligible for transplant and subsequently died had been prescribed medical marijuana  -- his use was neither 'illicit' nor 'illegal.'  (Certainly a tragic example of the necessity of educating oneself about this disease and the possible consequences of blindly following doctors recommendations.)

spectda:
Nonetheless, it is true that the current guidelines for organ transplantation requires the recipient to demonstrate complete abstinence from alcohol and illegal drugs -- it is a UNOS (United Network of Organ Sharing) guideline and compliance is expected of all transplant centers, regardless of state differences in medical marijuana laws.  And, as childangel24 knows from experience, random testing is often performed to confirm abstinence -- any listed patient found in violation of the guideline is removed from the list until which time the individual demonstrates 6 months of sobriety/drug abstinence.
It is just one of many guidelines to the transplant evaluation process -- hopefully everyone here and their loved ones will never have to worry about it!

child24angel:  I have to confess that deep inside I still do have unsettled feelings about doctors making decisions that are acting in the capacity of God...

[child24angel]

I agree, however, I know one liver went to a
HBV patient who was already HBV infected and would have died.
The other was not his blood type or size.
(this is what Nick and I were told) We were not told names
or anything else.  

Maybe it was I who was trying to play God?
I could have pushed Nick a little harder, how could
any mother let this happen to her son or any child.
I should have had him listed in other regions or states.

With that being said, Nick would have had to go through
the whole process of evaluation and tests at each center.
He was sick and refused me time after time.
Also, I was trying to think of him and I could clearly see he
was sick..and on a lot of medications.  He had everything
wrong...he wanted to wait for this center and so we did.
He had his little bag packed and I had his room sterilized and
ready , I was lining up friends to help me when he got out of the hospital.
He was going to live with me until he could go to his home.

In some states you can be listed at a 15-16 MELD and actually
be transplanted, in this state they like to wait until 21-23....
by then many things have already gone wrong.  Nothing makes
sense to me. They would not transplant him to early as that
may not proof to be beneficial.  But, it was too late at the end.

A warm and friendly warning to all who may need a TP, before
you reach the point of being too sick, get listed in other regions/states.

I wish you the very best Eureka.....from my heart.

Hugs to all
Elaine

[eureka254]

You're absolutely right about how being first on the list doesn't mean you'll be the first to get one.  In all fairness, the decisions any TP team has to make on a day-to-day basis are not easy ones, and they're just trying to save lives, trying to estimate the best possibility of success in saving lives, one at a time.

I think of you as one of God's angels, Elaine... I don't think you ever play to be anything other than what you are -- sincere and devoted.  You did as a loving mother would... you did the best you knew and respected the wishes of your child.  It's so hard when they're sick -- and you want so much to make it right, but it takes having the will AND the means.  My husband and I don't have a jet either ... :).  We could try to pursue possible listing at another center, but my husband doesn't want to travel either... and I have to respect that, whether or not I agree with it -- in the end, I can't go through the evaluation process for him, and he's feels had enough prodding and poking to last him a dozen lifetimes.  Thanks, and big hugs.

And for those who are wondering:  my husband is not considered eligible for transplant at this time due to the presence of 4 lesions in an otherwise compensated liver.  Nonetheless, the reality for people who are eligible is that there are not enough organs -- more donors could save hundreds of lives.  

So, if you have doubts about donation, I encourage discussion :).  I know it's a less than perfect system, but maybe if there are enough donors, those imperfections will fall by the wayside and organ failure as a cause of death can be a thing of the past.
~eureka

[trappedunderice]

ANYONE THAT IS NOT A DONOR SHOULD DO THE FOLLOWING:
TAKE ONE ROLE OF DUCT TAPE AND WRAP BOTH YOUR FEET AND YOUR STOMACH AND ANYWHERE ELSE FOR THAT MATTER AND WRAP THEM TIGHTLY AND LEAVE IT ON FOR NO LESS THAN 24 HOURS...That is just one of the many symptoms someone with ESLD experiences. Your donation doesn't cost you anything and of course remember you can't take it with you.
You could help a blind child or adult see for the first time the trees and animals and sunlight, you can help a mother live to raise her children instead of a foster home. These are all true stories of people I know personally that benefited from a transplant. I am a donor I hope any of my body parts will be able to help someone in need.
Even if you test positive for HepC you can still be a donor for someone that has HepC...
Like the Nike ad says "JUST DO IT!"

[Anne1717]

Being new to this I was sad  that I could no longer donate blood or organs.  I didn't realize organs were still okay !!   I guess if you are days away from death, an organ from a hepper is better than the alternative.  Forgive me for my naivete  but does the virus live in our organs once we are dead?  Does it matter if we are SVR?

[sunqueen]

sunqueen:  "Errrr. Ummmmmm. Uhhhhh."
Huh?  (Conflicted?  Apathetic? Offended?)

Judgemental?

No. I stammer a bit when I wade into posts like these.

Feel free to form whatever opinions you may have. My driver's license still says "organ donor." I work in hospice. I'm the person who has to prepare people to die and help them make their final arrangements. Because of my role, I am gold to harvesters. Donation companies want people like me to sign up people who are dying. Organ donation has become a corporate business. Do I care? No. Healthcare has become a corporate business. So what? I work for a corporation.

They're not evil.
They just have a lot of rules.
That they stick to.
Because they're corporations.

My *anger* comes from knowing that I can't be a donor. They were very specfic and clear when they said they incinerate the remains of anyone who tests positive for HIV, HBV and HCV. They will not take the remains of people who are incarcerated. Why? Because they believe there is a high chance they will have been exposed to HIV, HBV and HCV. Did I make this rule up? No! LOL.

The first time I had to sit through a whole hour of "how to sign 'em up" was right after I finished a particularly rough treatment. My hand shot straight in the air when they said they incinerate the remains of people with hepatitis. "What if the donor treated and cleared the virus?" Nope. If they test positive for exposure, they are contaminated. They will not place their workers, researchers or the public at risk. But they will send the cremains back to the family in a lovely little heart-shaped cardboard box.

So, feel good about yourselves. Go be organ donors.

[child24angel]

Thank you for your explanation.

Every thing that I've read says that an HCV positive person can still
donate organs.  I can't believe they told you they incinerate HCV organs.

I've also read that an  HIV patient nor cancer patients can donate organs.

I wish you the best in giving of your hospice care...it's where no one wants to be.
Your work is admirable.  We are not prepared for death or that of a loved one.

[sunqueen]

In 2007, multiple recipients contracted HIV and HCV from an infected donor. Now they screen all donors for exposure.

I hope you had people there for you when you lost Nick. There really is no way to be prepared for that kind of loss and I'm so sorry.

[eureka254]

Was just trying to guess what feeling you were trying to convey (…note the ?s) – didn’t quite understand that it was a stammer… and you shouldn’t hesitate to wade in, the water’s quite warm, really. :)

Hard to convey manner in print, but I don’t intend to be judgmental -- just trying to compare notes, being curious about what people feel on this topic and why they feel the way they do about their convictions, especially if we have different perspectives.  I happen to feel a very particular way about the issue, but I understand people have their individual reservations (signed up or not) about fallacies in the system.  You deal with this issue on an up-close-and-personal basis everyday, and I understand and respect your vehemence from a professional and personal level.  However, I don’t think it’s about feeling good about being an organ donor or feeling bad if you aren’t considered one – it’s about working through ALL the obstacles that stand in the way of a better system for both donors and recipients.

I don’t think the issue is screening, or what they screen for, rather the guidelines made afterward that are problematic…and judgmental.  Hopefully the harvesters you see around are the exception rather than the rule – it certainly is disheartening that bad corporate decisions like theirs cost lives – but I rely on the presumption that decisions like those aren’t set in stone.  (Yeah, I’m the eternal optimist.) What stands as policy for today can change tomorrow, and I’m still hopeful that in the near future, hcv will be so easily curable (hopefully along with hbv and hiv, and one day cancer) that everyone will be considered eligible regardless.

Elaine:  It may not be in our lifetime, but my hope is that one day people like Nick and my husband can both get livers readily...

[GoofyDad]

I've been an organ donor since my first drivers license. I don't know what they could transplant back then, but no matter.

I think what were seeing here is that we can all be organ donors, but the company that facilitates the donation doesn't have to use our innards if they don't want to. You can donate your lava lamp to Goodwill, but you can't guarantee it will end up on an oak desk.

I wonder whether we can specify who will get control of our junk when the time comes? Maybe there are some harvesters, maybe teaching hospitals, that would use our parts without the dramatic increase in our carbon footprints?

A cardboard heart? Sheesh. Do ya think I could ask em to put mine in a red brassiere instead? I figure a pair of D's outta do it.

[eureka254]

:) Hey, if you don't qualify to save a life, at least you'll know Victoria's Secret for all eternity.

[child24angel]

SQ, no hospice wasn't there, it really happened
fast...a week and half in the hospital and that was that.
Hospice came in with my brother though.
Thank you SQ.  

Goof, think HARD , there is something you can donate:)
That Victoria and her secret !!

Eureka, I agree that would indeed end this nightmare.
Some day there will be a cure for HCV as well.

Everyone sign up !! and give !

[child24angel]

I found this article informative and it makes for good reading
I can't take credit as this was sent to me by a dear friend, I do hope
if you get a chance you can read it. All my best to all members here.
Elaine



From American Journal of Transplantation


Underutilization of Hepatitis C-positive Kidneys for Hepatitis C-
positive Recipients


L. M. Kucirka; A. L. Singer; R. L. Ros; R. A. Montgomery; N. N.
Dagher; D. L. Segev
Posted: 08/26/2010; American Journal of Transplantation © 2010
Blackwell Publishing


"...........Our study suggests that HCV(+) kidneys are underutilized,
and that tremendous variation exists in national practice patterns
independent of measurable center-level characteristics. In this
article, we have quantified the risks associated with transplanting
HCV(+) kidneys into various subgroups of HCV(+) patients, so that
these risks can be incorporated into the risk/benefit decisions made
when an organ offer is considered for a given patient. We also
encourage consideration of the increased risk associated with HCV(+)
kidneys for risk-prediction models used to determine center-specific
outcomes, as the lack of adjustment for donor HCV status might create
a disincentive to the use of these organs and might contribute to the
high discard rates."


See:  http://www.medscape.com/viewarticle/724269

[eureka254]

"Our study suggests that HCV(+) kidneys are underutilized,
and that tremendous variation exists in national practice patterns..."

What's more, we could replace "kidneys" in the above statement with just about every other organ, too...

Thanks for keeping us up-to-date, Elaine.  Good stuff!

[Trish77]

Having my own organs refused isn't going to stop me from encouraging others I know to donate theirs.  Another story in the paper this weekend of a fellow who was diagnosed with Hep C too recently and available organs too few.  His brother donated part of his own liver in a living donation out of desperation at running out of time for available organs and it didn't take...he passed away.  

I can't give blood but won't discourage others from doing so.

Someone always makes some money from anything that saves lives - I used to work for non-profit for some years - nobody lives on nothing. Thankful for research and clinical trials and that makes money too but where would we be without it?  I used to idealistically bemoan the decadence of some fundraisers until someone clued me in on just how much money these fundraisers generate and what would NOT happen without it.  Eye-opening.  People that can afford to drop walloping loads of cash to entertain themselves might as well be dropping additional walloping loads of cash at the same time to good causes.  

While it might offend sensibilities that some "harvesters" don't want our HCV-tainted organs, others will .. and so what?  Everybody has a little "suck it up" to do on something.  I can't give blood because I have antibodies and they don't want to take chances.  I'm certainly not going to discourage others from giving blood because they don't want mine.   Too many lives lost because of an unsigned donor card.  

Keep getting the word out, Eureka.  One of our fellows had HCV, got a liver transplant and just finally successfully completed treatment. He's back to work part-time and gradually getting his life back after many years on hold. My thoughts are with you.

Trish

[willing]

does indeed seem that with more than 170M of us world wide we should at least be able to contribute organs within that sizable group. Good post, and a belated Happy Birthday!