Let's talk organs and donation.
 

On another thread, the topic of organ donation has been raised, so, to avoid hijacking that thread, let us continue here.

I marked this thread with a trigger because this can be a very sensitive, emotional topic for some folks. Let's please try to avoid making this a question of morals, personal ethics, or faith of any kind. Thanks, this thread may be a great service to many individuals.

Multiple sclerosis is the first condition we began discussing; there is some question as to whether MSrs can donate organs, blood, bone marrow, tissue, eyes, or bones.

The United Network for Organ Sharing: I believe this is a USA organization only.
http://www.unos.org/

In their Q&A, is this passage:

"Are there age limits or diseases that rule out organ donation?

For any death where organ donation is a possibility and consent is given, there will be a medical assessment of what organs can be recovered. There are no absolute age limits to organ donation. A handful of medical conditions will rule out organ donation, such as HIV-positive status, actively spreading cancer (except for primary brain tumors that have not spread beyond the brain stem), or certain severe, current infections. However, for most other diseases or chronic medical conditions, organ donation remains possible.

Unfortunately, many people never indicate their wish to donate because they believe, falsely, that their age or medical condition would not allow them to donate. If you want to save and enhance lives through donation, the most important action you can take is to share your donation decision; if donation is not medically feasible, that determination will be made at the time of death."

I will continue to seek answers to blood and bone marrow donation for MSrs. All others are most certainly welcome to offer any input!

I would like to see if any one would like my brain for research. I am thinking of asking my neuro for assistance on this.

I read an intresting issue about a man needing a kidney transplant and was not allowed to be cause he used M.J. ..he was advisied by his doc to use it for his condition to help him eat and keep it down and ease the pain he had..but was not allowed to get new kidney because he used .I found this kinda shocking and didnt realize that using can be considered an easy way to have organ rejection? and did not realize that one can be taken off list because of under doc orders he or she use M.J.? so hummm on that. can one not be allowed to donate if they use M.J. if one can not be allowed to recieve?????
And too I have asked about medical implanted devices being donated. Like my stimulator and or battery and learned most of time they just trash it after. seems a waste too.
anyways thanks for this new thread AMN will be lurking and following this one. ;) I am organ donor and so is my 17 yr old but d.h. is not but should be , guess thats what is great about the U.S.A. freedom of choice :) and choice of freedoms.
PEACE
BMW p.s. I started a thread about organ donation about a year ago here may hook my link to this if that is okay ..naww maybe will just p.m. you it AMN
well heck I will do both and hope I dont step on toes ....
http://neurotalk.psychcentral.com/sh...organ+donation
but I know this thread you have here now AMN is leading in a diffrent direction then the link i just posted... so PLEASE ya all reply with input ....
T.Y.

I would to Taffy and I don't think it would be hard to do.. Since I was a nurse I want to give anything they can use.It just makes me feel peaceful,
to be able to donate my eyes anything they can use. Hugs to all Sue

Absolutely, Twippy! Here:

http://www.nationalmssociety.org/res...nks/index.aspx

We were told this year that Jim could donate and that the rules had changed. But, I posted in the other thread that I, as well as Jim and Chris were apparently exposed to mad cow disease in Germany back in 1989 and cannot donate blood. So, my question is, if we can't donate blood, how can we donate organs? I think I need to call and ask.

Ah...now I see, Sandy...exposed to Mad Cow. That explains a lot! You know I'm just joshing you. You know this is said with a gentle elbow to the ribs.

The main point I wanted to make was that up in Oregon and Washington it was recently announced on the news that people who used marijuana, even with a medical MJ card, were being denied access to the organ recipient waiting list. Not sure of the "logic" in this. Sounds like if one needs a kidney, liver, or any organ transplant and has used marijuana, either legally or illegally, is denied.

Doesn't make sense to me. It's not a state law thing. I think it's a medical community thing. An HMO conspiracy? Who knows? Another instance of big brother deciding what's best for us, I suppose.

******
Most of the people I knew who ever did MJ in school would lie. Who could prove otherwise. Doctors know (House told me!!) "People lie".

This was a topic on another myasthenia gravis board too... about if those with severe auto-immune diseases can donate... I have on my license to donate and my husband knows... but frankly wonder after all 12 of my operations (and I am forbidden to give blood for a platelet disfunction) what they can take that is useful but I want to help out.
Those that called the donations places actually got contradicting opinions - some said they would take, some said they would not. I don't really think they know which is a bit scary.

It actually goes to transplant rejection, Steve. There is evidence to support the theory that smoking weed can increase the chances of rejection of the new organ.

That's what I'm hoping to accomplish with this thread, Rumpled, is there a definitive authority? A nationwide standard? A worldwide standard? And where/who is the final authority on this?

Well, I don't smoke, I never smoked weed, I'm 60 years old, have diabetes, arthritis, etc. and I signed the back of my non-drivers license so I am officially a donor (when the time comes that is).

I have also read (and I wish someone can clarify this for me), that IT DOES NOT MATTER IF YOU SIGN THE BACK OF THE CARD INDICATING THAT YOU ARE A DONOR.

They can only use your organs IF THE NEXT OF KIN gives permision??

Is this true?

I mean, why sign the back of the card, if the parents, the spouse, etc, is going to say "oh no, don't disturb the body". You DO know that this is the usual first reaction when they doctors come and tell you "we can use the heart, kidneys, etc. etc."

So is it true that it depends solely on the permission of the next of kin??

Or is it the case that once you sign on the back, it's a done deal!!!!

My son once told me "I would never donate anything".

I told him "don't be so cocky, you've never done anything for anyone in your life, and you better believe that once you leave this earth, I'm donating your entire body to science".

I'd do it too!!! Believe me on that one.

Thank you AMN for starting this thread. As many of you know, organ donation is my passion. Heck, Angels don't need kidneys or livers or hearts etc... I can tell you firsthand, that my darling son was ill for 15 yrs. He was losing a battle, was already near blind and donation saved his life. Not me~ it was God guiding the surgeon's.

I do believe it is a choice only YOU can make. As far as what the protocol or rules are, I think different states have their own views on the subject of organ donation. In IL, they changed it to what your DR Lic. says, but tell your closest relative etc that those are your wishes if you want to be a donor. When distraught, a family member cannot always think or do what the donor wanted, due to high emotions...*understandable*.

I also know that people w/MS can donate organs. The rules used to be very strict, but the Nat Org Reg has lightened up and now "living" strangers can be a match. It's all in the blood/tissue type matching.

Do you know that if you want to be a living donar that you will not get billed for it?
It goes through the recipient's ins. At least that's how it used to be.

*getting off soapbox* I would never ever condemn anyone for not wanting to donate after death, but I know firsthand how a life can change.

Please know that I am not preaching ..... I'm just a very grateful Mom.

I do not have any organs to donate at this time. I do, however, have a gently used piano I would consider giving to a worthy recipient. :cool:

Yep, they can have my organs, but they gotta wait until I don't need them anymore! :D

Okay, on blood donation.

From the American Red Cross:
http://www.redcross.org/services/bio...0_557_,00.html


"Chronic Illnesses
Most chronic illnesses are acceptable as long as you feel well, the condition is under good control, you have an adequate hemoglobin level and your temperature is normal when you come to donate, and you meet all other eligibility requirements."

Please do visit this link, there is a long list of conditions and circumstances that each individual should review before donating (or attempting to donate) their blood. It's our responsibility to know what is and is not acceptable.

Did you know that you should NOT donate blood within a year of getting a new tattoo?

I have it stipulated in my living will that I will donate whatever is usable to whomever needs it. My kids know this, too.

I hope that my organs can be used to help someone. I think it's a great way to celebrate your life and a great way for the family that's left to have something positive to hold onto. :)

I found that out several years ago when I tried to donate blood for my co-workers newborn. I was the only match in the lab I worked at and they wanted someone they knew. I was denied because of my surgery less than a year prior to donating. They said I may have received blood during the surgery without my knowledge. :eek: The tattoo thing is due to hepatitis and other blood born diseases that could present themselves at a later time.

I am sitting here pondering this whole mj thing now. Jim smokes to relieve his clonus. It's sad when a person chooses a drug that works better than a major narcotic, yet will be refused life because it's illegal. I wonder if methadone or any legal drugs are a deciding factor as well? If not, what makes those class of drugs Ok and mj not? I guess I better start my research.

be sure to give your dr's copies of living wills or any notorized statement you have about donating. this does take stress off the family and the dr's for having to ask.

if it's your choice, you should stipulate that anything not useable for donation, to be donated to science./research.

NO! That's NOT the only reason why! It's because weed use increases the rate of rejection.

"Many doctors agree that using marijuana — smoking it, especially — is out of the question post-transplant. The drugs patients take to help their bodies accept a new organ increase the risk of aspergillosis, a frequently fatal infection caused by a common mold found in marijuana and tobacco. . . . "
http://lawprofessors.typepad.com/hea...ana-and-o.html

Like I said at the beginning of this thread, let's please avoid the moral, ethical debates and concentrate on what is factual and supportable information. We have a lot of unanswered questions. Thanks for understanding. :)

I understand that. What I am asking and pondering about is the use of other legal narcotics and do they also cause an increased rate of rejection as well? For example, methadone. It's a very powerful pain reliever, yet is also used to help heroin users get off heroin. That's what I want to research so I am well versed if the subject comes up. If it's a mold thing than the use of other narcotics may be Ok. If Jim can donate organs would the use of other narcotics be the deciding factor as well? I guess it's more out of curiosity than anything else.

Dig in and let us know what, when, who, where, etc. This will help us all to better understand the process and its restrictions.

So far, I have not been able to locate what I'd consider an authoritative remark on weed. There's plenty of lay-opinion out there, not much from established scientists (that I've yet seen).

Let's keep looking.

Thanks!:)


Man, I'm really striking out here, I'm searching for an index or database where we can type in specific meds to discover whether they interfere with organ donation. Nada so far. On Monday, I'll call an old friend who is a retired nephorologist and founder of our local kidney transplant system. He'll know how to help me find that data (I think).


Here's a great Myths vs. Facts sheet from the UNOS:
http://www.unos.org/resources/factsheets.asp?fs=7

No, dm, it turns out that imaginary royalty will not provide you any advantage in this department.

Reading the R.C.'s site, I see my whacky li'l ticker is the preclusion re: blood donation :eek:. Who'da thunk that would be a deterrent.:o

(Mine's definitely symptomatic, and June 11 the heart monitor comes off. Yippee!!!)

Wer'e going to the Univ on Wed for DS's transplant check up, so I'm going to ask the coordinator about the regulations on donors. It's now piqued my interest to update what I already know about donation.

I do know that our colors are Kelly green for organ donation. I have a green bracelet. We had friend's Mother pass away and at the visitation, they handed out cards w/organ donation info, a green pin attached , a wonderful saying about their Mother on it, plus a website for further information.

I thought that was such a cool thing to do in honor of their Mother. They donated her organs and she looked so peaceful lying there, yet her heart was still beating, elsewhere.

Cool, DM, how about making a list of questions to ask them for us? Then you can print it out and get the facts, ma'am.

They can have any part of me! And I hope I live to an old age and all my parts are still functional at that time. If I'm like my Mom and Dad, my heart will be good right to the last minutes. I'd like my liver, eyes and kidneys to go to someone who needs them as well.

Donorship - when you can't donate, you can - in other ways:
 

My bits and parts are all up for grabs when I go. If someone else can use them I say have at them! I ain't gonna need them where I am going!

My mom's corneas were used when she died. I got a beautiful letter from the New England Eye Bank telling me that both corneas were used and because of her donation, two people could see. I think she would have liked that, since my oldest brother is totally blind.

I am of the mind that organ donation should be an opt-out rather than an opt-in anyway. It should be standard practice that unless a family specifically objects, donor status is assumed.

That's exactly what I've done, and it's mainly because I adore forensic science.:)

My Father who has been Diabetic for 35 years brought us 4 children together along with mom to let us know his intentions. Because the disease has taken so much of his body there is not much left to give an organ donation but, since his body is so full of the disease he has contacted the Joslyn Diabetic Clinic in Boston and is donating his body for research. He has been going to the Clinic since he first got this dreadful disease and he has used many Trial-Drugs and Monitors. He did this all on his own. I am so very proud of him.

I did have one brother who threw a fit and said he had to burry his body and Dads response was "No, you will never see my body again, why not give it to a research company to help someone else not have this dreadful disease that is killing me daily?" I will never forget those words.....

I have also signed the back of my DL - and it is in my living will that all the area hospitals have that I will donate what ever anyone needs to help some one else.

Thank you, AMN - this is such an important issue that everyone needs to understand fully. Thanks for helping people get answers.

I know I didn't answer any questions and probably hijacked the thread but there are other ways to help as Southie stated......

I have an excellent idea. If a person has no family so to speak. No one to do the funeral for them, etc. then why not leave the body to science so it can help humanity.

That way, there is NO COFFIN to purchase, no flowers to purchase, no going to the funeral parlor, etc.

You make it known that you want your body donated to science, that the organs are to be used as needed.

That way, you will be appreciated, remembered, and you will have helped research, FOR THE FUTURE.

And if there ARE any family members who think that there is going to be a funeral, or a wake and then they find out that there won't be, well I've thought of that too.

You gather whoever wants to come, to your home. You take a photo of the deceased, you put some nice flowers in front of the photo. And you take a posterboard, and you write. IN MEMORY OF (whatever the name is).

and you write the words (under the IN MEMORY), you write. He is still living on, still helping others. (or whatever you wish to write that might honor the person).

I think this is a very very good idea. Everyone benefits. The people get to say goodbye, because this could be a memorial service. They came to gather, to remember, and they find out that this person did something WONDERFUL, that it was HIS wish!!!

I really can't see anything negative in this.

What do you all think??

Uh, Mel, I think you meant to post this in the Coffins thread. ;)

lol.

well, since this is an organ donation thread, I figured I'll put it here.

Anybody who is reading the coffin thread, is probably reading the organ donation thread too!!!

but you are correct.

I am thoroughly chastised.

Melody

I told my husband he can donate me to science or whatever... We figure that after I die, he can write his cell phone on my butt with a sharpie with a note - "please call when you have figured out what is wrong as no one did when she was alive" and hopefully someone will call him with an answer and they can keep all the parts they want.

I have some sort of weird platelet thing that sometimes they work, and... sometimes they do not... so they made up a word for me - idiopathic (of course!) thrombocytopathy and told me to get a medic alert. I used to give blood all the time and so I contacted the blood bank and it went all the way up to the top and they finally said no, stop... they did not want my faulty platelets in the supply.

Doing some research, I found articles regarding recipients of organ donations and the use of Medical Marijuana which I found interesting:

Here is one dated May 19, 2008:

Quote:

Medical marijuana and organ transplants don't mix

In this article, the issue of the patient/organ recipient using not only prescribed medical marijuana but other medications as well is cause for rejection. This may not be what Cindy is looking for, but it is just as important.
http://www.latimes.com/news/nationwo...9.story?page=1

I found this table:

Table 3.2

Reasons for Non-Use of Recovered Organs, 1997 to 2006

Kidney



http://www.optn.org/AR2007/302_ord.htm

here's the entire report of all organs:

http://www.optn.org/AR2007/data_tables.htm

Hello everyone! I just have to come back here and say a huge THANK YOU to AMN for bringing awareness to organ donation. My DS had his labwork yest and is holding his own on kidney function. (yah) He goes to the Univ for his transplant checkup Wed.

The labs are so important *BUN and Creatinen* as they monitor kidney function. Thank you everyone from a family that knows how organ donation can save lives.

http://dl9.glitter-graphics.net/pub/...c6oez1lkq4.gif

Great thread, Cindy :). I will be donating my organs and my brain tissue (I just read about that in the summer issue of Momentum). I did find out today that Ms'ers an d people with certain other autoimmune disorders can't donate bone marrow :(. I really wanted to do that because I've heard that there is a real need for people to sign up on the bone marrow registry. I wonder what effect my Tysabri use could have on my candidacy for organ donation? Does anyone know anything about that? There really needs to be one place where you can find all of this type of info. It is just scattered everywhere as far as I can tell.

Cheryl said the organs of those who take meds will be regected. Though I take meds for my epilepsy, whats wrong with my organs (besides liver)? If something is wrong with my organs, why are they giving these meds? Besides, I'd love them to have my brain to inspect & maybe learn, so others could be helped.

Lor, Cheryl didn't say that, she offered a few articles that talk about it.

We're trying to learn whether there is a searchable database or index of specific Rx meds and their influence (if any) on organ donation acceptance.

Have you looked into the different, ongoing medical studies on epilepsy? There may be a donor bank that will gladly accept your gifts.

I'm afraid I'm a bit ignorant when it comes to epilepsy, is there a society or foundation to support those in the epilepsy community? They would surely have available resources for you.

Nope Lor, that's not what I said. If you read the article I posted, Lor, that's what the articles are talking about, as Cindy pointed out. I did some online research to see if I could add to what Cindy was posting. It seems to be a subjective issue doctor to doctor, hospital ethics committee to hospital ethics committee. Not really fair as they are judging the recipients based on their lifestyle and not medical science. If that is the case, then that opens the door for a lawsuit as I found out.

If it's based on medical science, then there should be a protocol for it...and if there is, I certainly couldn't find it written down anywhere.



Check out the Epilepsy forum and the useful links.

This is for the Australians amongst us in regards to organ donation -

If you've ever wondered whether organs and tissues of people with MS would be accepted for donation in Australia, given that the cause of this condition is unknown, an aquaintance rang and asked that question.


"At the time of a possible transfer of organs or tissues an assessment is made which looks at the medical history of the donor and a decision is made then. Some tissues, such as the cornea, could be rejected on the basis of MS. So registering as a donor is still a good idea if that is what you wish to do."


Of course, the Brainbank usually want MS brains.

Just so you know.........