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  #1  
Old 02/01/07, 03:14 PM
rio002's Avatar  
Join Date: Jul 2002
Location: WA
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Off Organ Donor List Info.

Hi all, I don't know if anyone outthere wants this info. but after losing my sis in Dec. this topic has become extremely important to myself and family. We are all (about 30 of us) having ourselves removed from the Organ Donor List in honor of my sis. Reason as to why: When she went into the er/hospital after many tests and eeg ect. they informed us she was brain dead, she was on life support, and they said there was no chance of recovery. They started hounding my BIL for "decisions" about pulling the plug and donating when she had only been in the hospital 26 hours, every hour for 4 hours they pressured him and then everytime he went back to see her or when we did too. This was unacceptable to us as the family, being we had 1 ER dr. say she should be monitored and retested every 24 hours for 3 days, and here they were already pushing, they even pushed on xmas eve right there in her room with her boys there. They kept everyone out of her room for 7 hours straight one day saying they were doing tests ect.--we thought maybe they found something good--then were told that evening that all those tests were being done by Life Center an organ donation/procurement place, we were infuriated that they made it sound like they were trying to help her instead of "taking inventory of her" as they put it and refering to her as a "gold mine" also their words, all spoken in front her 13 and 16 year old boys. We got a second opinion, and that was the same "brain death"...........what we didn't know was when you are listed as an organ donor on your drivers license, once there have been 2 opinions saying "brain death", Life Center can come in at anytime and take your loved one off for donation regardless of family request, there is no family at bedside when the machines are turned off just an operating room and strangers. They said the only reason they hadn't come and taken her already is because there was so much family there, and they were hoping we would give up without a fight. Don't get me wrong, organ donation is a great thing, and yes she consented to it, but as a family, we were only requesting time, time to think, time to see if she could come out of it, dr.s don't know Everything, if they did we wouldn't have miracles, we also had Xmas (she went in on the 21st and passed the 28th after donation) we knew she wouldn't want her death to be on her favorite holiday plus we had to think of her boys, who will have a lifetime of Xmases to get through--she would have been horrified if we would have let her go before xmas. Technically, we all know we are organ donors, we are having it removed from our licenses though, I can't imagine ever putting my dh through that kind of treatment and pressure, nor not being given the time to perhaps recover regardless of medical staff, it was all just too much for these broken hearts to take. I just felt the option and in our case how it was handled should be mentioned, thanks.
I checked for WA. state and it is $10 to have it removed if you do it before you have to renew, or you can do by snail mail at:
Living Legacy Registry
11245 SE 6th st Ste 100
Bellevue WA. 98004
www.livinglegacyregistry.org

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  #2  
Old 02/01/07, 03:45 PM
Tub-thumper
 
Join Date: Jun 2005
Posts: 1,588

I'm very sorry about the loss of your sister.

I'm not doubting your story at all but it sounds like the hospital had questionable practices regarding organ donation.

From http://www.mnmed.org/ppe/live%20give%20q%20and%20a.pdf

Why does my family have the final say? What about me?
The family matters. Although laws technically allow procurement agencies to recover organs and tissues without family consent, in practice this is not done. Hospitals and physicians by custom and policy defer to the family because they know the family lives on and must feel comfortable and at peace with what happens to their loved one. This respect for the families involved helps maintain public trust in the donation system.

This is from Minnesota; perhaps laws are different in different places? I sincerely hope your family's bad experience won't stop others from being organ donors.

/VM

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  #3  
Old 02/01/07, 03:46 PM
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I am so sorry you & your family have had to go through this.

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  #4  
Old 02/01/07, 03:49 PM
 
Join Date: Jan 2003
Posts: 1,072

I'm really sorry about your sister. It is a hard thing for anyone to go through, and sometimes life just doesn't seem fair when life is on the brink.

I debated about posting this, because I believe everyone has a right to their opinion, and your opinion is valid with your experience. The thing is, I grew up on the other side of the fence. My father lost both kidneys when I was three years old, and lived for almost 14 years on Kidney dialysis. I remember being told to go in his room at the hospital and tell him goodbye and that I loved him but not to cry because that would upset him. You see they thought he was dying, and in fact he was. Twice during those 14 years he received two transplants. Those transplants gave me my father, even though ultimately neither one lasted for long before his own body rejected them. My father has three children and a wife that he was able to enjoy almost 14 years with and to see his kids grow up enough to know that they were going to be okay in their own life before he finally died.

Because of the life we lived with my father, we were often in the hospital and we would watch the donor process and the lucky people who got their new organ. I've seen miracles, and I have seen wive's so happy to have their husbands, and parents so happy to know their child was going to live. It's a gift someone doesn't expect, but when received it changes so many lives for years to come.

Now, I can't say I have always been for organ donations. At 16 years old I was bitter that my Dad died without a matched donor. It wasn't fair to me, and I really thought that if MY dad had to die, there was no way I was saving another life if I die. I have sense grown up, got over my bitterness, and again see the miracle in the whole process.

My grandmother died a little over a year ago. Although in her mid 80's, all organs were donated. Her eyes are being studied to cure glaucoma because she had glaucoma. My mom has glaucoma and this is one way that maybe others in the family will have a cure in case they develope glaucoma. I know my granny would be dancing a jig if she knew she saved one of her great grandchildren from suffering from that ailment.

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  #5  
Old 02/01/07, 08:33 PM
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Location: Upstate NY
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Quote:
We are all (about 30 of us) having ourselves removed from the Organ Donor List in honor of my sis.
Sounds more like you are removing yourselves from the program IN PROTEST to your sister's hospital.

I know you're doing this to spare your family more pain down the road, but if you must take this route... I imagine it would be pretty productive if you made your reasons crystal clear to the hospital, the organ procurement program, and even the public. You really can make a meaningful difference, one way or the other, to honor your sister...
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  #6  
Old 02/01/07, 08:49 PM
 
Join Date: Dec 2002
Posts: 4,587

I'm so sorry for the loss of your sister, and for the additional pain these circumstances caused. You were right not to let her go before Christmas.
Thank you for sharing your story.
mary

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  #7  
Old 02/01/07, 09:08 PM
 
Join Date: Feb 2006
Location: MS
Posts: 47

I am sorry for the loss of your sister and the unfortunate handling by the procurement group and the hospital in WA.

I am a heart recipient and attend regular support group meeting for all type of transplant recipients in the Southeastern part of Mississippi. This support group is sponsored by the Mississippi Organ Recovery Agency. I have gotten to know several of the workers with MORA on both the recipient and donor side. I have also gotten to know several of the Donor Families and from all accounts, this situation would never happen in Mississippi. When the hospital contacts MORA, they will contact the family only one time. Regardless of the answer, MORA will stay with the family to offer support either way but will never mention donation again unless the family mentions it. In Mississippi the law gives the next of kin final authority for donations. If anyone signs their drivers license and has a signed donor card the next of kin still has to give the final permission. I have also talked with members of the hospital staff in Hattiesburg and they all guarantee the donor is treated with the same respect and dignity as the recipient. This hospital does not do transplants. This situation is like many others, one bad experience can do more harm than ten good ones. I am not asking you to reconsider taking your names off the donor list, but I am asking you to give very serious consideration to still being a donor. On February 22, I will be four years from transplant and am very grateful for the donor family that has made it possible for me to see our grandson grow into a young man. I have never met the donor family, but remember them daily and will be grateful for them as long as I live.

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  #8  
Old 02/01/07, 09:27 PM
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As I have mentioned before, my husband is a kidney recipient, and I am his donor.

It is my opinion that you are reacting to the inappropriate behavior of a few people in one hospital. By condoning removal of a large number of people from the possibility of donation, you are not hurting those who hurt you.

I hope that after dealing with the actual cause of the problem, you would consider a different response. However, I fully respect any decision that you and your family members make.

My prayers for you and your family, and my sincere condolences in your loss.

May your family be blessed with peace.

Rose

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  #9  
Old 02/01/07, 09:32 PM
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Location: ME
Posts: 3,119

Thanks to the OP for the info, my religion does not allow organ donation. I made a sticker for my license, I didn't know I could be taken off a list officially.

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  #10  
Old 02/01/07, 09:41 PM
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Join Date: Feb 2004
Location: So Cal Mtns
Posts: 11,301

I respect your decision completely.You are taking charge of your health care,and making an informed decision.Which BTW,everyone involved in your case should have said IMO (Though Im ignorant as to what your State law dictates).

Having gone this far,you need a durable power of attorney for health care,and a living will.

I wish 98% of people would do as Rio,and learn from their situation.You have to do it NOW,because otherwise its too late.

Plan ahead,and spare your family a lot problems when in these situations.They need to know what your wishes are,and who you want making decisions.And they need the LEGAL DOCUMENTS to back them up.

Because as sure as Im typing,many many folks will go into these situations completely unprepared.

Facing life and death decisions,unprepared, under the biggest stress you will ever face is NOT a good thing,and your decisions may be quite poor in that situation.

Edit-Rio,Im hoping someday you will find comfort in your sisters' donations for the life she had can now live on in others.That takes a very special person to do that.
Also admire your families courage in carrying out HER wishes.Fine decision and I dont think you will regret it down the road.I salute you for that.


BooBoo

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  #11  
Old 02/01/07, 10:38 PM
 
Join Date: Aug 2006
Posts: 7,165

I am sorry for your loss and for the treatment by the hospital.

I also understand that a lot of people are helped by organ donations.

While I don't care what my family does with my body - except have a funeral - I don't want a hospital or doctor making the decision. Forgive my cynicism, but I have dealt with enough doctors to know there are some bad apples out there.

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  #12  
Old 02/01/07, 10:55 PM
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I am sorry for your loss.

But I guess I don't understand how people will know you are an organ donor, if you do not have it legally in writing somewhere.

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  #13  
Old 02/01/07, 10:56 PM
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Join Date: Jul 2002
Location: WA
Posts: 453

I appreciate all your responses, and please to those who are concerned, we are all still organ donors and each family member knows the others wishes (getting through actual paperwork ie: wills, power of attorney ect. will take some time) I just won't have it on my drivers license anymore. The one nurse who was so great I'll never forget him, said it was only 2 years ago that WA. state passed the law allowing them to take your loved one away based only on their orignal consent (& two concurring diagnosis of brain death,) which was on her drivers license, they even went so far as to print out a copy of her actual signature and all the details of this law to prove they were legally allowed to do so. I do agree, our hospital staff was incredibly awful to say the least at handling this, and not once did anyone from the Life Center staff speak to us until her dh said ok and then they only spoke to him to be sure she hadn't been out of the states in so long. Then nothing from them. I am glad to hear there are so many outthere that have had better lives because of donation, we do know there was one guy waiting at a hospital in Seattle all prepped and ready for her liver, I sincerly hope it worked for him and his family. Her dh did go ahead and clear for her corneas and skin ect. to be donated also (did you know they can use/store the skin right off your back for burn victims? I was amazed at that) So it does help to think of those she has helped, and if the time arises we will all do the same, just minus the pressure. BTW, I did find a site and did some research on it, and through them you can buy a packet of documents to clarify your final wishes--it's called the Five Wishes packet, stands as legal documents in most of the states (it shows you which states accept it as legally final wishes). In it you answer what types of treatment you want and don't want, you can name a power of attorney ect. It's $5 a packet, I remembered hearing about it on Dateline during the Terri Schiavo case, I'm thinking about picking up a packet of 25 of them (then their a $1 each) for the family, atleast to help some start planning. http://www.agingwithdignity.org

Thanks guys.

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  #14  
Old 02/02/07, 05:33 AM
 
Join Date: May 2002
Location: Fl Zones 11
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Please write a letter of protest to your hospital, your local medical association, your governor of state detailing the incredibly arrogant way in which you were treated. Politicians have a lot of pull in health care.No one should be treated as you and yr family were.

My coworker at my hospice 15 years ago warned me not to have organ donor put on my drivers license. She had been an ER nurse in another state and told me that frequently the ER got a "shopping list" (kidney type O, corneas type A etc) when a trauma came in of that blood type they were to be "less aggressive" in treatment and ask family about donations.

We will still donate for traumatic irreversible brain death - we just want to be able to make an informed consent without the pressure you experienced.

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  #15  
Old 02/02/07, 10:49 AM
 
Join Date: Aug 2003
Location: Arkansas
Posts: 5,553
Quote:
Originally Posted by Grandmotherbear
Please write a letter of protest to your hospital, your local medical association, your governor of state detailing the incredibly arrogant way in which you were treated. Politicians have a lot of pull in health care.No one should be treated as you and yr family were.

My coworker at my hospice 15 years ago warned me not to have organ donor put on my drivers license. She had been an ER nurse in another state and told me that frequently the ER got a "shopping list" (kidney type O, corneas type A etc) when a trauma came in of that blood type they were to be "less aggressive" in treatment and ask family about donations.

We will still donate for traumatic irreversible brain death - we just want to be able to make an informed consent without the pressure you experienced.

Please, before you make such statements as you have above, would you provide us with stronger evidence to support this. It does not seem possible that anyone would actually allow one person to die inorder to save another person, did that actually make sense to you?

I also believe that rio002's family was not treated with the understanding and respect which would have made the loss of her sister far less of an ordeal. I believe her family should voice their feelings and concerns to any and everyone who can insure that no other family should ever have to be place in that position in the future.

It is hoped that after they have had time to heal and recover, that they will decide that they will not allow their experience with one hospital keep 30 people off the donor lists.

Marlene
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  #16  
Old 02/02/07, 11:12 AM
 
Join Date: Nov 2002
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I am also an RN who has worked ICU. I also have seen patients sort of hurried because they are doners. I dont have it on my license...

Our son, when he was 2 1/2 was on life support/comatose for 16 days. At about day 5, they wanted us to disconnect him. We couldnt do it... but they did push pretty hard...

He is a 30 year old now...

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  #17  
Old 02/02/07, 11:23 AM
 
Join Date: Oct 2004
Location: Western WA
Posts: 4,653

I am sorry for your loss. Just reading your post regarding the behavior of these people makes my blood boil. I cannot believe you are able to be as calm about this as you are. The behavior you describe is completely and totally unacceptable, and needs to be outed to the light of day. If this had happened to me or my family I would pursue this through whatever means necessary to make sure people knew about this kind of thing, and to make sure that the people responsible were held accountable.

In addition to reporting these folks to whatever regulatory body that is appropriate you should contact channel 4,5, and 7 investigative reporters and have them do a story on this. This is a perfect example of the type of thing they can help spread the word about. I would then pull a website domain name and make a web page about the subject with your story on it, and links to the investigative reporters news stories. I would then contact the people at the local major newspapers and see if they will do a story about it. Following that I would then write my own letter to the editor of the major area newspapers.

If this had happened to my family as described I would pursue this with relentless passion, and I would not rest until it was resolved.

I don't need people to tell me about the importance of organ donation. I won't go into the details, but rest assured I am WELL aware of the importance and benefits of organ donation. However, the process used, and the people involved needs to be challenged, exposed, and changed!

My wife and I have had "organ donors" on our WA drivers licenses for the last 20 years, but you can be sure I'm now going to look into that more closely.

Also, with the OP's permission I would like to forward your story to some family and friends? I have work to do on this subject...

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  #18  
Old 02/02/07, 11:26 AM
 
Join Date: Oct 2004
Location: Western WA
Posts: 4,653
Quote:
Originally Posted by caroline00
I am also an RN who has worked ICU. I also have seen patients sort of hurried because they are doners. I dont have it on my license...

Our son, when he was 2 1/2 was on life support/comatose for 16 days. At about day 5, they wanted us to disconnect him. We couldnt do it... but they did push pretty hard...

He is a 30 year old now...
Unbelievable, simply unbelievable! Patients hurried because they are donors?!?! This is just incredible!
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  #19  
Old 02/02/07, 11:31 AM
 
Join Date: Oct 2004
Location: Western WA
Posts: 4,653
Quote:
Originally Posted by rio002
what we didn't know was when you are listed as an organ donor on your drivers license, once there have been 2 opinions saying "brain death", Life Center can come in at anytime and take your loved one off for donation regardless of family request, there is no family at bedside when the machines are turned off just an operating room and strangers. They said the only reason they hadn't come and taken her already is because there was so much family there, and they were hoping we would give up without a fight.
The more I think about this, the more angry I get. How can anyone, and I mean anyone, think that behavior like this is acceptable!?!?
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  #20  
Old 02/02/07, 11:46 AM
 
Join Date: Aug 2005
Location: Northwest Ohio
Posts: 326

I am so sorry for this horrible experience. I would hate to think that being an organ donor, something that is inately supposed to be good, can turn into something so negative for the family.

Am I understanding this correctly...You can still be an organ donor, but you do not have to have it listed on your license? And if you choose not to advertise it on your license, the hospitals have no way of knowing you are a donor until your family carries out your wishes, correct?

How to you register to be an organ donor if not through the license bureau?

This information is interesting...guess I have some research to do before my license renewal this year...

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