KEDASO
Active member
- Joined
- Mar 22, 2009
- Messages
- 42
- Reason
- Loved one DX
- Diagnosis
- 04/2001
- Country
- US
- State
- California
- City
- Oceanside
Hi all,
I must say that I truly appreciate the people who have responded to my posts the past two weeks. I am faced with a poor prognosis, and have been told by one of my doctors, that I MUST have my Advance Directive filled out before I go back on my chemotherapy, which is in three weeks.
Because my disease, CIDP, is a sister disease of ALS, and 5% of CIDP people do not get help from the normal protocol of treatment of which I fall into that category, my future is not the brightest. And when I go back on chemotherapy, my auto-immune system is brought down to almost nil. Which is why my doctor now is having me get it done now, since he is afraid I will pick up an infection I will not be able to fight off and pass on.
With advanced CIDP, I am facing now or in my future, many of the problems ALS people are or have faced with. Since there is so few of us on the CIDP forum with advanced CIDP, I cannot get answers to my questions, since either other CIDP members with advanced CIDP are too sick, or have passed on. Laurel, I thank you, as I got many questions answered here.
Thank you to those who answered, as below are my answers to the questions in the Advance Directive. And as I read through past posts, I was able to see both views to this--the ones who opted for equipment/procedures to continue on with their life is a somewhat okay quality of life; and also read from family members, where the person opted NOT to have things like a trach/ventilator, or feeding tube, and later passed on.
I had to think about this awhile, and thank you especially Joel, for leading me to my answers.
WHAT I NEED HERE NOW, IS THE MEDICAL TERMINOLOGY THAT YOU GUYS HAVE WITH THE EQUIPMENT OR PROCEDURES. I am going to list it in my words, from what I got from replies to my posts, and if some of you could answer this post with how it should actually be shown, in the medical terminology.
QUOTE FROM ADVANCE DIRECTIVE:
"(2) AGENT’S AUTHORITY: My agent is authorized to make all health care
decisions for me, including decisions to provide, withhold, or withdraw
artificial nutrition and hydration, and all other forms of health care to keep
me alive, except as I state here:"
<My answer>
-I choose that if faced that it is time to go on a ventilator/respirator, that a cuff tracheotomy be performed, and that my initial going on a ventilator have the understanding that I be put on a portable ventilator within two months, with the intention that after it is deemed safe and that I and my life-partner have been taught how to use it, that I be sent home to live with the portable ventilator.
<TO JOEL HERE--WHAT IS THE DIFFERENCE BETWEEN A VENTILATOR AND A RESPIRATOR--ISN'T IT THE SAME THING? ALSO- WHAT IS THE TERMINOLOGY FOR THE CUFF TRACHEOTOMY?>
-I have full knowledge as mentioned to me by my doctors, that should the situation arise that a Jejunem Feeding Tube be required, that I DO opt for the feeding tube, unless it is deemed by my durable health power of attorney, that my end of life is near within two weeks, and that I be just kept comfortable and clean, and out of total pain by whatever medications can be given. I also want to make note here, that if it is determined that I would still be able to live at home but with a needed feeding tube, that it DEFINITELY be done, and taught to myself and my durable health power of attorney, on how to use and maintain the feeding tube.
-I choose that if it is then deemed that I only then have approximately two weeks left to live, that I am then bedridden with little use of arms/hands and legs, am fully on a stational ventilator and feeding tube. that FULLY I am kept out of pain by ALL possible means even if it means I go into an unconsious state or it hastens my death, and that THEN it/I be listed as "DNR", (Do Not Resuscitate).
<NEED SOME GUIDANCE HERE FROM YOU GUYS ON THE FORUM--DOES TWO WEEKS SOUND LIKE A GOOD TIME TO PUT IN? DOES ANYONE THINK IT SHOULD BE LONGER OR SHORTER?>
<SHOULD I ADD ANYTHING HERE? I HAVE BEEN TOLD IT WILL MOST LIKELY BE A LUNG INFECTION THAT WILL "DO ME IN". DOES ANYONE THINK I MISSED ANYTHING? MY MIND IS FULL OF PAST POSTS, AND AM ON MEDICATIONS THAT MAKE MY MIND "FOGGY", SO I DO NOT WANT TO MISS ANYTHING. PLEASE THROW ME YOUR THOUGHTS OR SUGGESTIONS.>
I am sorry for posting and bothering you guys on this. They just called me this morning to tell me the insurance approved the chemo again, and that now I have some urgency to get this done. I have had some very long talks with my life partner over the past two days, who doesn't really like to talk about my end of life issues, though, after having a long talk alone with my primary care doctor, has come to accept it. Though, even though I have him appointed as my durable health power of attorney, if I eventually do get to the point where I am close to death, I don't want him to still continue a major push to continue my life.
This is all a bit overwhelming for me, and all suggestions will be taken seriously.
I thank you all so much.
KEDASO
(Ken)
I must say that I truly appreciate the people who have responded to my posts the past two weeks. I am faced with a poor prognosis, and have been told by one of my doctors, that I MUST have my Advance Directive filled out before I go back on my chemotherapy, which is in three weeks.
Because my disease, CIDP, is a sister disease of ALS, and 5% of CIDP people do not get help from the normal protocol of treatment of which I fall into that category, my future is not the brightest. And when I go back on chemotherapy, my auto-immune system is brought down to almost nil. Which is why my doctor now is having me get it done now, since he is afraid I will pick up an infection I will not be able to fight off and pass on.
With advanced CIDP, I am facing now or in my future, many of the problems ALS people are or have faced with. Since there is so few of us on the CIDP forum with advanced CIDP, I cannot get answers to my questions, since either other CIDP members with advanced CIDP are too sick, or have passed on. Laurel, I thank you, as I got many questions answered here.
Thank you to those who answered, as below are my answers to the questions in the Advance Directive. And as I read through past posts, I was able to see both views to this--the ones who opted for equipment/procedures to continue on with their life is a somewhat okay quality of life; and also read from family members, where the person opted NOT to have things like a trach/ventilator, or feeding tube, and later passed on.
I had to think about this awhile, and thank you especially Joel, for leading me to my answers.
WHAT I NEED HERE NOW, IS THE MEDICAL TERMINOLOGY THAT YOU GUYS HAVE WITH THE EQUIPMENT OR PROCEDURES. I am going to list it in my words, from what I got from replies to my posts, and if some of you could answer this post with how it should actually be shown, in the medical terminology.
QUOTE FROM ADVANCE DIRECTIVE:
"(2) AGENT’S AUTHORITY: My agent is authorized to make all health care
decisions for me, including decisions to provide, withhold, or withdraw
artificial nutrition and hydration, and all other forms of health care to keep
me alive, except as I state here:"
<My answer>
-I choose that if faced that it is time to go on a ventilator/respirator, that a cuff tracheotomy be performed, and that my initial going on a ventilator have the understanding that I be put on a portable ventilator within two months, with the intention that after it is deemed safe and that I and my life-partner have been taught how to use it, that I be sent home to live with the portable ventilator.
<TO JOEL HERE--WHAT IS THE DIFFERENCE BETWEEN A VENTILATOR AND A RESPIRATOR--ISN'T IT THE SAME THING? ALSO- WHAT IS THE TERMINOLOGY FOR THE CUFF TRACHEOTOMY?>
-I have full knowledge as mentioned to me by my doctors, that should the situation arise that a Jejunem Feeding Tube be required, that I DO opt for the feeding tube, unless it is deemed by my durable health power of attorney, that my end of life is near within two weeks, and that I be just kept comfortable and clean, and out of total pain by whatever medications can be given. I also want to make note here, that if it is determined that I would still be able to live at home but with a needed feeding tube, that it DEFINITELY be done, and taught to myself and my durable health power of attorney, on how to use and maintain the feeding tube.
-I choose that if it is then deemed that I only then have approximately two weeks left to live, that I am then bedridden with little use of arms/hands and legs, am fully on a stational ventilator and feeding tube. that FULLY I am kept out of pain by ALL possible means even if it means I go into an unconsious state or it hastens my death, and that THEN it/I be listed as "DNR", (Do Not Resuscitate).
<NEED SOME GUIDANCE HERE FROM YOU GUYS ON THE FORUM--DOES TWO WEEKS SOUND LIKE A GOOD TIME TO PUT IN? DOES ANYONE THINK IT SHOULD BE LONGER OR SHORTER?>
<SHOULD I ADD ANYTHING HERE? I HAVE BEEN TOLD IT WILL MOST LIKELY BE A LUNG INFECTION THAT WILL "DO ME IN". DOES ANYONE THINK I MISSED ANYTHING? MY MIND IS FULL OF PAST POSTS, AND AM ON MEDICATIONS THAT MAKE MY MIND "FOGGY", SO I DO NOT WANT TO MISS ANYTHING. PLEASE THROW ME YOUR THOUGHTS OR SUGGESTIONS.>
I am sorry for posting and bothering you guys on this. They just called me this morning to tell me the insurance approved the chemo again, and that now I have some urgency to get this done. I have had some very long talks with my life partner over the past two days, who doesn't really like to talk about my end of life issues, though, after having a long talk alone with my primary care doctor, has come to accept it. Though, even though I have him appointed as my durable health power of attorney, if I eventually do get to the point where I am close to death, I don't want him to still continue a major push to continue my life.
This is all a bit overwhelming for me, and all suggestions will be taken seriously.
I thank you all so much.
KEDASO
(Ken)