Thoughts by Lucy Barnes
I was recently approached to share some information and thought while it was fresh in my mind I would share this with others. 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 some thoughts to give folks some ideas on how they may want to handle their own living will, advanced directives and organ donation issues.
2. Before you finalize anything 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.
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 others would designate this be done. Not much, if anything, is done in the way of tick borne disease testing and even the recipients of donations did investigate Lyme in tissues and organs, the tests are missing 75% of those infected. Hopkins published an "oops someone messed up" abstract a while back where they had reported on several patients getting Babesia 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 assist with tick borne disease research. So, what I have done is to leave the organ donation designation on my drivers license and I carry the organ donor card with my license too. On the card I wrote,
"LIMITATIONS! Please contact family or family doctor at this number _________".
They won't start organ donation procedures until a family member is notified (and permission is gained) so we don't need to be concerned that our organs will accidently go to someone just because you are listed as an organ donor. This is ONLY valid if your family and your family doctor are aware of your wishes and condition.
To note- 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) states they don't want that to happen no one will be able to use the organs or follow through with the wishes of the deceased and the rest of the family.
The reason- 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 that can cost the hospital or facility big bucks. And that HAS happened quite a bit so they have this unwritten policy you may never know about.
3. If you want to donate your organs 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 previously, one person can "blow" the whole deal very easily by objecting to the donation.
4. I have written an adjusted copy of an advanced medical directive and living will to fit a Lyme patients situation (see forms at links below). In my own personal copy I have asked to have my organs, and/or tissue samples and blood samples donated to Igenex Lab for research and have given permission to have my personal medical records, if needed, released to them in order to aid in their research.
Please note- If you decide to donate samples the recipients don't need whole organs only small tissue samples of the organs. This knowledge may encourage some patients to donate and also "sounds" a bit better to the family when the time comes. You can also say exactly what you want to do on your instruction form that is kept with your advanced directives and living will.
5. At the time of death..
Keeping in mind I have already filed the copy of my advanced directives and living will with the local hospital and at my doctors office and with all family members.
My family has instructions to immediately contact Igenex Lab for a blood/tissue sample kit.. and to have Igenex fax instructions immediately on how to preserve tissues and blood so the tissues can be harvested without waiting for the kit. TIME is important! This collection MUST be done immediately or samples will risk deterioration and contamination. Most hospitals won't need an official Igenex kit (tissue samples are pretty standard) but just in case, I've instructed my family to get the kits for shipping purposes.
To be sure my wishes were carried out I gave them ALL a lecture and said I would "haunt" them if they didn't do what I had instructed, and they believed me!
6. Igenex Lab 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 these topics.
I also suggest attaching a copy of whatever you decide to do to your will and if you have a lawyer give them a copy and be sure they review it. Also provide copies to your doctor and one to each family member.