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