Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I was recently approached to share some info I had researched a while back... and thought while it was fresh in my mind I would post this here for others.. if interested. Keep in mind..
1. This is MY opinion. I am not a doctor.. nor a lawyer... nor an expert in this area. I am simply sharing what I have done personally for myself... to give folks some ideas.
2. Before you finalize everything.. be sure to have a trusted lawyer review it AND... most important.. be SURE your family knows your wishes. Remember... THEY can make or break the deal. You MUST talk to them and be sure your wishes are clear and understood.
````````````````````````````````````````````````` My email on this topic said..
I have done a lot of research into organ donation. My conclusions are this:
1. We, as Lyme patients, should NOT donate our organs or tissues in the standard way. The donating places don't do much, if anything, in the way of tick borne disease testing.. and even if they did.. how good are the tests? Hopkins published an "oops someone screwed up" abstract a while back where they had reported on several folks getting Babs due to organ/blood donation. My thought is.. heaven forbid if we give this horrible disease to others who are already bad off!
2. I WANTED to donate my organs or do something to aid research. So, what I have done is to leave the organ donation designation on my license... and I carry the organ donor card with my license too. On the card I said,
"LIMITATIONS... contact family or family doctor... at this number _________".
They won't start organ donation procedures until a family member is notified (and signs permission).. so not to worry that your organs will accidently go to someone if you have Lyme, just because you are listed as an organ donor.
Now.. bottom line is... When a person dies or is in a medical state where he is not going to live.. EVEN if the hospital/funeral home, etc have documents and strict instructions to donate any and all organs....
If even ONE next of kin (one daughter out of 7 kids for example) says they don't want that to happen.. nearly all places will NOT use the organs or follow through with the wishes of the deceased and the rest of the family.
The reason being... Lawsuits.
Their theory is.. a dead person won't sue you for not using the organs... but a living relative who objects can sue hospitals, funeral homes, etc... and can cost the hospital or facility big bucks. And that HAS happened quite a bit.. so they have made this policy... even if it isn't written.
3. If you want to donate.. like I will be doing... you MUST ... absolutely MUST.. be sure ALL members of the family know your wishes very clearly in advance and will abide by them. Like I said.. one person can "blow" the deal very easily by objecting.
4. What I have done is make an adjusted copy of an advanced medical directive and living will to fit a Lyme patients situation or actually .. MY situation. In it I have asked to have my organs, and/or tissue samples and blood samples donated to Igenex for research... and have given permission to have my personal medical records.. if needed.. released as needed to aid in that research.
By the way... They don't need whole organs... only tissue samples of the organs.. and actually only a few samples of a few organs... which also "sounds" a bit better to someone considering doing donating their organs or body to science... and you can also say exactly what you want to do on your instructions.
5. At the time of my death..
And I have already filed the copy of the advanced directives and living will with the local hospital.. and at my doctors office in my record.. and with all family members.
Well, they have instructions to immediately contact Igenex for a blood/tissue sample kit.. and to have Igenex fax instructions immediately on how to preserve tissues and blood... so tissues can be harvested without waiting for the kit. TIME is important.. it MUST be done immediately or samples will risk contamination. Most places won't need an official Igenex kit (tissue samples are pretty standard).. but just in case, I said to do that.
Plus I gave them ALL a lecture and said I would "haunt" them if they didn't carry out my wishes... and they believed me! HA!
6. Igenex can use the samples for research, as they see fit. If they charge a fee, my life insurance can pay the bill ... and it shouldn't be any more than normal tissue samples and blood work.
These are my opinions and what I plan to do after researching it all.
I also suggest attaching a copy of whatever you decide to do to your will and if you have a lawyer.. I don't have one.... give them a copy and be sure they review it. Also give a copy to your doctor and one to family members.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is a blank copy of the directives and living will I made up. Be sure to note.. this is NOT a legal document. You must check all plans with your attorney!!!
I have a space on the form to hand write all blood and organ tissue sample instructions. ````````````````````````````````````````````````
____________________________________________
Medical Power of Attorney Effective Upon Execution
ADVANCE DIRECTIVE
APPOINTMENT OF HEALTH CARE AGENT
I, ______________________________ , a resident of:
____________________________________________
Phone numbers and other information: ____________________________________________
as my Agent to make any and all health care decisions for me, except to the extent I state otherwise in this document. My Agent shall have full power of attorney authority for health care decisions. For the purposes of this document, "health care decision" means consent, refusal of consent, or withdrawal of consent to any care, treatment, service, or procedure to maintain, diagnose, or treat an individual's physical, emotional, or mental condition.
My Agent's power of attorney authority becomes operative when this document is signed. This power of attorney exists indefinitely from its date of execution, unless I revoke the power of attorney in writing.
If I am incapable of making an informed decision regarding my health care, as determined by my Agent, I direct my health care providers, after obtaining written permission from my Agent, to follow my instructions as set forth below in the Advanced Directives. I have initialed all those that apply.
If my death from a terminal condition is imminent and even if life-sustaining procedures are used there is no reasonable expectation of my recovery as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially. _______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food by mouth, I wish to receive nutrition and hydration artificially.
If I am in a persistent vegetative state, that is, if I am not conscious and am not aware of my environment nor able to interact with others, and there is no reasonable expectation of my recovery, as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially. _______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food by mouth, I wish to receive nutrition and hydration artificially.
If I have an end-stage condition, that is, a condition caused by injury, disease, or illness, as a result of which I have suffered irreversible, severe and permanent brain damage indicated by an inability to sustain life without drastic mechanical measures and have complete physical dependency on life sustaining mechanical measures, for which, to a reasonable degree of medical certainty, all possible treatment of the irreversible condition would be medically ineffective, as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially.
_______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food and water by mouth, I wish to receive nutrition and hydration artificially.
_______I direct that, no matter what my condition, medication to relieve pain and suffering not be given to me if the medication would shorten my remaining life, as approved by my Agent.
_______I direct that, no matter what my condition, I be given all available medical treatment (including but not limited to chiropractic care, physical therapy, supplements, herbs, alternative therapies, etc.) as approved and ordered by my Agent.
I direct that all medical treatment be approved or denied by my Agent, in writing, prior to administration or removal of such treatment, including but not limited to all medications, surgeries, therapies, chiropractic care, and/or other procedures.
I direct (in the following space, indicate any other instructions regarding receipt or nonreceipt of any health care):
____________________________________________
____________________________________________
____________________________________________
____________________________________________
Where necessary to implement the health care decisions that my Agent is authorized by this document to make, my Agent has the power and authority to execute on my behalf all of the following:
Documents titled or purporting to be a "Refusal to Permit Treatment", "DNR", and "Leaving Hospital Against Medical Advice"; Any necessary waiver or release from liability required by a hospital or physician.
Authorize my admission to or discharge from (including transfer to another facility) any hospital, hospice, nursing home, adult home, medical care facility, or private home;
Consent to the provision, withholding, or withdrawal of health care, including, in appropriate circumstances, life-sustaining procedures.
My Agent is to make health care decisions for me based on the health care instructions I give in this document and on my wishes as otherwise known to my Agent. If my wishes are unknown or unclear, my Agent (and my Agent ONLY) is to make health care decisions for me in accordance with my best interest, to be determined by my Agent after considering the benefits, burdens, and risks that might result from a given treatment or course of treatment, or from the withholding or withdrawal of a treatment or course of treatment. A second opinion from a trusted medical professional who is chosen solely by my Agent shall be obtained if they so desire.
My Agent has permission to consent to the disclosure of this information. No information will be disclosed to other parties without the Agents written permission, which will be determined on a case by case basis. This includes any and all medical records, for any purpose.
My Agent shall have full access to all current and past medical records, pharmacy/medication notes and prescriptions, physicians and other medical professionals notes and reports, legal records and notes, nurses and nurses aids notes or reports, x-rays, MRI's, SPECT scans, ultrasounds, cardiac tests, physical therapy notes, lab reports, etc. and shall immediately upon their request, be provided copies of any and all records generated throughout my lifetime.
My Agent shall not be liable for the costs of care based on this authorization or otherwise.
My Agent has permission to authorize release of and obtain donations of tissues, organs, fluids, and other material for testing and/or research purposes, to be sent to facilities of their choice at the time of my death.
In the event that my designated Agent, ____________________________, becomes unable or unwilling to serve I hereby designate _____________________________ presently residing at:
____________________________________________
____________________________________________
Phone numbers and other information: ____________________________________________
____________________________________________
as my as my alternate agent.
I revoke any prior Medical Power of Attorney on file at any medical institution or medical professionals office.
By signing below, I indicate that I am emotionally and mentally competent to make this appointment of a health care agent, assign a power of attorney, and complete an Advanced Directive, and that I understand the purposes and effects.
The original copy of this Medical Power of Attorney is located at:
____________________________________________
____________________________________________
____________________________________________
Signed copies of this Medical Power of Attorney have been filed with the following individuals and institutions:
____________________________________________
____________________________________________
____________________________________________
Attending family physician or specialists
OTHER-
____________________________________________
I sign my name to this Medical Power of Attorney and Advanced Directives on the date of ____________________________________, at the following location: ____________________________________________
____________________________________________
_______________________________ NAME- Signature
_______________________________
NAME- Print
Statement of witnesses:
I hereby declare under penalty of perjury that the person who signed or acknowledged this document is personally known to me (or proved to me on the basis of convincing evidence) to be the principal, that the principal signed or acknowledged this durable medical power of attorney in my presence, that the principal appears to be of sound mind and under no duress, fraud, or undue influence. I am not the person appointed an agent by this document. I am not related to the principal by blood, marriage, or adoption. I would not be entitled to any portion of the principal's estate on the principal's death. I am not the attending physician of the principal or an employee of the attending physician. I have no claim against any portion of the principal's estate on the principal's death. Furthermore, if I am an employee of a health care facility in which the principal is a patient, I am not involved in providing direct patient care to the principal and am not an officer, director, partner, or business office employee of the health care facility or of any parent organization of the health care facility.
____________________________________________
Witness Signature and date
____________________________________________ Address and phone number
____________________________________________
2nd Witness Signature and date
____________________________________________
2nd Address and phone number ____________________________________________
Subscribed and sworn to before me on [DATE].
____________________________________________
Notary Public, [COUNTY, STATE]
My commission expires ______________________________________
posted
Tincup, thanks for all the DETAILS you posted. I plan on doing this too, informed hubby the other day about this, and discussion still going on.
I do want any memorial money to go to our 1st CHRONIC LYME RESEARCH CENTER, COLUMBIA UNIV., NYC.
I'll come back later & print off a lot of what you show.
In my case, I don't want anyone to have any ORGANS. I don't want anyone going thru all the years of hell I've gone thru with all my illnesses caused by misdiagnosed chronic lyme disease.
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Carol B
Unregistered
posted
Must tell you from personal experience-when I donated my daughter's organs it was perhaps one of the most traumatic experiences of my life( and there have been a few )
Mostly because of the detail involved. It's not just a matter of consenting or honoring your loved one's wishes.
Before they can "harvest" the tissue or organs you go through a grueling intimate list of every body part or tissue. I almost stopped mid survey because it was so hard , it was like standing at the autopsy table while they dissected her body.
The only reason I didn't start screaming STOP was because i was determined that some good would come from her death-so I persevered. And I am glad that I did. They sent me a medal of honor in her name.
I am not telling you all this to discourage anyone-but to let you know it is not a simple process for the family left behind-it is emotional and exhausting-not just a simple yes or no. Just because the deceased has already agreed, a family member must agree to each and every body part and tissue and blood vessel to be "harvested".
I personally think there should be some counseling done before hand-because -as Tincup said-it can be a "haunting" experience.
I thank you for bringing this up- not only because it gives me a good excuse to vent, but it also reminds me that I am a designated organ donor myself-but not designated enough i guess. I never thought of someone getting my lyme infested body parts. Far reaching consequences...
I have a headache- I need my pillow. Carol
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Carol B
Unregistered
posted
"I have spent part of the day emailing to Margaritas for one of their recipes." LMT you have got to be kidding?
What do you say we return to the bay and set up a lab to invent the perfect lime in the coconut recipe through our own experiments?
And whatsay you is the relevance to this thread? It will probably bring me to my grave sooner than later.Anyone on the board want my body for their own research on lyme disease?
posted
In response to the organ donation: When my husband passed away it was one simple question at the funeral home.
Not many questions about specific body parts. Maybe it depends on the state where you live.
I'm sorry it was so difficult for you.
Posts: 82 | From east hampton ny | Registered: Jun 2006
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Carol B
Unregistered
posted
Dana, thanks for the TLC, I needed it more than TBD today. And LMT, our little get away did me a world of good-some times we can't FIX things-but we can sure make a difference-and you have made a difference in my life. Lemonade- our decision had to be made in the hospital while she was still on life supports-and the hospital would not release the body until the transplant recovery team was done.
The only way I could reconcile it was to believe that God had overcome the world and held onto my child when the first beating of her heart was still. The spirit of the child artificially kept on life supports was already dancing with the angels.
posted
Carol, my heart aches for your having lost your daughter and reliving it due to the subject content here.
But you added some soulful words here too ... it's the loved ones that must make the tissue designation! I would have never thought of that.
As I type this, I know your daughter is with you in spirit hugging her beloved Mom and giving her special kisses that your heart feels.
It goes again to have ALL our personal affairs all wrapped up and the family members knowing all the details.
Again, my heart goes out to you that it wlll heal a little bit more each day.
My husband's 1st marriage; they lost their 3-yr. old daughter to a SMALL POX shot; isn't that what they get when our soldiers go overseas? If I'm wrong, it's what they are given. It went into her system and killed her. Take care my online friend. Soft gentle hugs..
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I told my family I was finally going to get to go to medical school after I die.
I have arranged to donate my body to the local medical school and for my family to award me a "Medical Degree" at a memorial service.
Carol, I am so sorry for your loss and the agony you must have had to go through, but you did it - and helped your daughter save or prolong several lives. You both deserved that medal and more.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
edit: (Tincup's second post in this thread was repeated in this spot. I've edited it out to make the post more readable at another's request. Please scroll up to that post if you wanted to see what I was refering to. I had puilled it up because I needed access to it.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
It is so difficult to type for the tears falling down my face...
I can't bear the thought of losing any one of you to this.
Please, stay stong and know that you are so loved.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Melanie Reber: It is so difficult to type for the tears falling down my face...
I can't bear the thought of losing any one of you to this.
Please, stay stong and know that you are so loved.
Melanie
I'm sorry to have saddened you so, Melanie. That wasn't my intent. I just needed to think about the practical aspects today. I have nothing prepared and someday I will need them.
I am holding on and know I am loved and thank you for giving me that.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I read Mary Roach's book and gave it to my daughter-in-law who is a physician. We were both amazed at her research and her ability to write funny. It is a hilarious book, but very informative.
My carcass is still going to the medical school. It will be put to good use. And I will get my medical degree.
Does Igenex have the facilities to work with tissue etc.? I thought you had to have a pathology lab to be allowed to do that.
posted
This is a sad subject, but I will answer Ann's question: yes, a chipmunk can climb a tall tree.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
bringing to the top for someone, tori, who is looking for it for use NOW.
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