X-Message-Number: 21495
Date: Sat, 29 Mar 2003 02:29:02 -0800
From: James Swayze <>
Subject: My surgery adventure yesterday, Advanced Directive news, opinions
please
All,
Yesterday I had successful surgery to replace my Baclofen anesthesia
spinal intrathecal pump. My battery low beep alarm had been going off
for 9 months before I finally got my doctor to take it serious.
Apparently some glitch in its sensors makes it detect low body temp as a
low battery. My body temp is always 97.4-97.7 normally. I finally got
them to take notice when I said my damn body temp is not low just out of
a damn hot shower!
The reason for my attitude with them is recently learning that sudden
cessation of baclofen drug flow to my spine is fatal! I don't recall
anyone telling me that when I first was thinking of getting the thing.
It has helped me though. Without it life would be hardly worth living. I
can only attempt to describe what it was like without the pump but even
such descriptions fall woefully short of experiencing the problems it
has corrected. I was having violent contractures that occurred every 3-4
seconds. There would be an initial full force one then every half second
thereafter a tapering off like the hops of a bouncing ball losing
energy. They would tighten all my back and back of leg and buttocks
muscles and gut and diaphragm beyond what one can do normally. This
would throw my head back and shorten my breath and pull my arms away
from whatever I was trying to do repeatedly with each rocking
contracture. It was beginning to occur 24/7 just 5 years ago. With every
contracture my muscles tightened down on blood vessels furthering the
raising of my blood pressure already elevated from the pain of the
contractures. As I have described before spinal cord injured people
often suffer hyper reflexic autonomic dysreflexic. This disease causes
blood pressure to elevate in response to pain in areas not any longer
enervated by the nervous system. It is quite insidious and I happen to
be very acutely responsive to it. My pressure once reached 300/150 over
a simple bowel impaction and routinely reaches the neighborhood of
240/112. Oral baclofen and pain meds were losing their effectiveness. I
really had little choice but knowing all the facts would have been nice!
I also just found out that not even oral baclofen can stem the fatal
effects of cessation of the intrathecal drug. It has something to do
with catastrophic failure of receptor site that have grown used to the
drug resulting in contractures so terrible as to cause loss of breathing
control, heart failure and seizure to name but a few.
So it was that yesterday's surgery while not risky enough to be an
inpatient procedure did have a small degree of chance of bad outcome.
Due to this I put together an amendment to the Advanced Directive that
they issued to me to fill out. I find standard advanced Directives to be
woefully inadequate for the general population and disastrous for a
Cryonicist. For the general population they have no provision whatsoever
to define what actions should take place in the event of brain damage or
imminent brain damage or brain damage serious enough cause or threaten
if the situation continues severe loss of identity. Of course for the
Cryonicist standard AD's have nothing remotely acceptable for transition
from resuscitative/non resuscitative procedure to initial cryostasis
procedures. Here below are the addendums I wrote somewhat in haste as it
is my procrastinative nature to put thing off to the last moment. Any
opinions as to future revision are most welcome. My AD package and plan
consisted of three Appendices and 3 copies of identical forms to
Appendix B with an added line for my Physician, Operation Room nurse and
Anesthesiologist each to sign. I managed to get 2 of the three to sign.
The nurse kind of shined it on. He was intensely interested and agreed
orally to abide by my wishes but I think he having a lower income and
less education than the doctors might have feared legal ramifications
that his level income might not have handled. This is despite my telling
them all that it was not legally binding and that I was asking only for
"do everything humanly possible..." and that I understood beforehand
that a living patient also under their care would take precedence to a
deceased one, in their world, if such a patient had an emergency and
they needed to leave to attend, but that I hoped they could find a
replacement to attend me until family, funeral director or cryonics
personnel arrived.
This below is the primary appended addendum:
____________________________________________________________________________________________________________________
APPENDIX A
Amendment and addendum to Advanced Directive
In the event of my imminent death requiring consultation of Advanced
Directive the following provisos are to be acted upon. This document
amends and addresses particular and serious inadequacies of the standard
Advanced Directive.
1.) Should any correctable situation threatening imminent death occur
use all reasonable means to resuscitate me. If resuscitation fails
continue or start CPR as per cryonic initial procedures laid out in
APPENDIX B and summarized on medical alert bracelet or necklace.
2.) If my condition is resulting in current situation or procedure
caused brain damage, worsening brain damage or imminent profound brain
damage all procedures prolonging life and the furtherance of brain
damage and damaging situation and all life support is to cease.
3.) If the above, item 2, has occurred then continue or start CPR as per
cryonic initial procedures laid out in APPENDIX B and summarized on
medical alert bracelet or necklace.
4.) The following persons may act for me to choose what level of brain
damage and identity survival impairment I am likely to approve of. See
APPENDIX B for contact information.
a.) Terry Johnson, executor of will, durable power of attorney,
caregiver, Healthcare Representative relation stepbrother
b.) Claire Johnson, durable power of attorney, caregiver, Healthcare
Representative relation stepfather
c.) Moodene Johnson relation mother
d.) Peter Swayze relation brother
____________________________________________________________________________________________________________________
This below is the initial cryonics suspension procedure instructive
appended addendum:
____________________________________________________________________________________________________________________
Appendix B
\\\\\ EMERGENCY CRYONICS FIRST AID INFORMATION AND INSTRUCTIONS REWARD
/////
If I should die or be found diseased while under your care please
respect my wishes regardless of personal opinion or beliefs James Swayze
Signed_________________
The Medicalert Bracelet and Necklace on my person states:
[FRONT] Whole Body Donor If Dead Cool with Ice Especially Head Do Not
Embalm or
Autopsy See Reverse REWARD (For following instructions faithfully)
[BACK] "Uniform Anatomical Gift Act. Whole Body Donor to Cryonics
Institute
Cryonics Institute Headquarters 586-791-5961 Toll Free 866-288-2796
Emergency Pager 313-990-5916 Consulting mortician J. Walsh 586-293-3390
\\\\\ IMPORTANT PLEASE ACT QUICKLY TO STEM ISCHEMIA DAMAGE TO BRAIN
/////
[STEP 1, PLEASE BEGIN IMMEDIATELY]
Begin or continue CPR (both compressions and artificial respiration use
either intubation or other such apparatus) and if allowed push 50,000 U
heparin by IV to prevent spontaneous blood clotting (clotting will clog
blood vessels and prevent adequate perfusion of anti ice crystal
formation cryonic perfusate agents perfused by funeral
director/mortician). Also use ice to cool head, thorax and groin.
IMPORTANT Please continue CPR and maintain ice cooling of head, thorax,
and groin until family and/or funeral director arrive to take over. (use
automatic thumper cardio/pulmonary machine if possible to relieve
persons or rotate persons to prevent fatigue).
[STEP 2, PLEASE CALL IMMEDIATELY]
Please call in order of availability the below numbers also found on my
medic alert bracelet and Necklace while simultaneously having someone
maintain CPR.
Cryonics Institute Headquarters Toll Free 866-288-2796 Toll
586-791-5961
Emergency Pager 313-990-5916 Consulting mortician J. Walsh 586-293-3390
LAST RESORT IF ABOVE UNAVAILABLE, Send an email to Andy at
\\\\\ IMPORTANT Please ask about injecting heparin /////
[STEP 3, PLEASE CALL IMMEDIATELY UNLESS CRYONICS PROVIDER DOES INSTEAD]
Continue simultaneous CPR and have some call Layne's Funeral Home, 16 N.
E. Clark Ave, Battleground, WA 98604 Ph# 360-687-3143, Denton and
Barbara Harlan are the owners.
[LASTLY PLEASE CALL AS SOON AS POSSIBLE IN ORDER OF AVAILABILITY]
360-910-2245 Terry Johnson Caregiver/Executor/Durable Power of Attorney
360-687-5992 Parents Claire Johnson, Moodene Johnson
Parents cell # (Stepfather 903-7906) (Mother cell 903-6474)
360-600-3852 Peter Swayze
\\\\\ EMERGENCY CRYONICS FIRST AID INFORMATION AND INSTRUCTIONS REWARD
/////
____________________________________________________________________________________________________________________
This below is the identical to Appendix B to be signed by attending
medical personnel document.
____________________________________________________________________________________________________________________
\\\\\ EMERGENCY CRYONICS FIRST AID INFORMATION AND INSTRUCTIONS REWARD
/////
If I should die or be found diseased while under your care please
respect my wishes regardless of personal opinion or beliefs James Swayze
Signed_________________
I, _____________________ the attending physician/nurse for procedure
_______________________________ dated ___/___/_____, agree to follow as
best is humanly possible the procedures laid out below and/or obtained
by calling Cryonics Institute of Michigan, to best meet my patient James
Swayze s request for initial procedures for cryonic suspension in the
event of his death. Signed ___________________
The Medic alert Bracelet and Necklace on my person states:
[FRONT] Whole Body Donor If Dead Cool with Ice Especially Head Do Not
Embalm or
Autopsy See Reverse REWARD (For following instructions faithfully)
[BACK] "Uniform Anatomical Gift Act. Whole Body Donor to Cryonics
Institute
Cryonics Institute Headquarters 586-791-5961 Toll Free 866-288-2796
Emergency Pager 313-990-5916 Consulting mortician J. Walsh 586-293-3390
\\\\\ IMPORTANT PLEASE ACT QUICKLY TO STEM ISCHEMIA DAMAGE TO BRAIN
/////
[STEP 1, PLEASE BEGIN IMMEDIATELY]
Begin or continue CPR (both compressions and artificial respiration use
either intubation or other such apparatus) and if allowed push 50,000 U
heparin by IV to prevent spontaneous blood clotting (clotting will clog
blood vessels and prevent adequate perfusion of anti ice crystal
formation cryonic perfusate agents perfused by funeral
director/mortician). Also use ice to cool head, thorax and groin.
IMPORTANT Please continue CPR and maintain ice cooling of head, thorax,
and groin until family and/or funeral director arrive to take over. (use
automatic thumper cardio/pulmonary machine if possible to relieve
persons or rotate persons to prevent fatigue).
[STEP 2, PLEASE CALL IMMEDIATELY]
Please call in order of availability the below numbers also found on my
medic alert bracelet and Necklace while simultaneously having someone
maintain CPR.
Cryonics Institute Headquarters Toll Free 866-288-2796 Toll
586-791-5961
Emergency Pager 313-990-5916 Consulting mortician J. Walsh 586-293-3390
LAST RESORT IF ABOVE UNAVAILABLE, Send an email to Andy at
\\\\\ IMPORTANT Please ask about injecting heparin /////
[STEP 3, PLEASE CALL IMMEDIATELY UNLESS CRYONICS PROVIDER DOES INSTEAD]
Continue simultaneous CPR and have some call Layne's Funeral Home, 16 N.
E. Clark Ave, Battleground, WA 98604 Ph# 360-687-3143, Denton and
Barbara Harlan are the owners.
[LASTLY PLEASE CALL AS SOON AS POSSIBLE IN ORDER OF AVAILABILITY]
360-910-2245 Terry Johnson Caregiver/Executor/Durable Power of Attorney
360-687-5992 Parents Claire Johnson, Moodene Johnson
Parents cell # (Stepfather 903-7906) (Mother cell 903-6474)
360-600-3852 Peter Swayze
\\\\\ EMERGENCY CRYONICS FIRST AID INFORMATION AND INSTRUCTIONS REWARD
/////
____________________________________________________________________________________________________________________
Possible revisions:
One thing I am thinking of adding depending what you all think about it
is to mention that CPR should continue regardless who is doing it until
two conditions are met. The first condition is that CPR should continue
until hypothermic temperatures have been reached and can be maintained
because such temperatures have been shown to help protect against
ischemia damage to the brain. The second is that if Heparin is allowed
to be intravenously infused then CPR should continue until such time as
the first condition is met and the Heparin has had a reasonable chance
to reach the entire blood circulatory system so as to ameliorate the
chances of spontaneous clotting that would hamper adequate cryonic anti
ice crystal formation fluids perfusion.
Another possible revision is to better explain in writing that the
signing by medical personnel the agreement to aid in initial cryonic
suspension procedures is only meant as a declaration of non opposition
to the procedure and that no prosecution will be sought for failure to
comply. Perhaps adding a reminder of the reward for helping would be
appropriate to add with this.
Any thoughts? Help with te exact wording of the above possible revisions
most welcome. There may be typos and spelling mistakes in the above,
it's late and I've had a long day and so I welcome corrections.
James
--
Cryonics Institute of Michigan Member!
The Immortalist Society Member!
The Society for Venturism Member!
MY WEBSITE: http://www.geocities.com/~davidpascal/swayze/
A RELIGION I actually recommend: http://www.venturist.org
A FAVORITE quote: Last lines of the first Star Trek the Next Generation
movie.
Capt. Picard: "What we leave behind is not as important as how we've
lived, after all Number One, we're only mortal."
Will Ryker: "Speak for yourself captain, I intend to live forever!"
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