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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)
 
Ken, I am probably not the best person to advise you about your advanced directive as I have not made one up because I plan on living for a long long time yet.

Concerning a trache and vent, why are you wanting a cuffed tube? Are you not able to talk now? Are you choking on food and saliva? I still think the best way to resolve some of these issues is is for you to PM me your phone number so I can call you.
 
Thanks for your reply, Joel

This is what I meant by, that I need the correct terminology.
I just wrote, what I thought you had mentioned that that was the kind of trach you had.
I don't know much at all abount ANY kind of trach, let alone a cuff trach.
This is all new to me, so I don't have all the terminology right.
---
I don't have to PM you my phone number--I can give it to you right here.
I printed everything out from posts of last week, and we had a long talk over the weekend.
Yes, he is totally backing me in what you have, and not to throw in the towel. And is willing to go through the care of someone with a trach/vent.
I will print out what I have here, and we can discuss it over the phone.
Tomorrow is not a good day--I am seeing my Primary Care Doctor, and come home exhausted from fatigue.
But Thursday I think would be good, if it is good by you.
I have a toll-free number, but am not sure if it works from Canada.

I am in California, so I think I am only 1 hour different from you.
Thanks,
KEDASO
(Ken)
 
Last edited by a moderator:
We realize that directives sound so morbid and detailed so much as to make a person sick just talking about them... but it is a good idea if you don't have a person designated to make decisions for you. We think that is easier, so we are going that route.

We intend to keep Rick around for a very long time, in whatever manner we have to. We want him comfortable and enjoying whatever he can, however he can. That's all we know. The feeding tube and trache can't be worse that we already dealt with when his leg was almost amputated in July 2007. What with 5 surgeries the first week, and eventual skin and bone grafts, nothing could have been like that. I was his caregiver and that eliminated the need for rehab hospital stays.

When you love someone you can do anything! And I always say, "I'll do my best." But until the time comes, we aren't putting things on the calender. We'll be ready to draw strength when and if those times come.

My sister is having chemo almost nonstop for 7 years.... and with her positive mental attitude, hasn't even lost her hair. Weaker men have been carried off sick after a half an hour of a lesser dose, and she is tough and holds up to the end of each 4 hour session... sometimes three times a week. \

Hang in there. I wish you all the best. marjorie
 
Ken,
As I think I said earlier, I'm so sorry for the pain and anxiety you are going thru. I hope and pray that you have a support group/person/people at home to help you with all the decisions,
take good care,
brenda
 
to Joel

Thanks SO much for your call from you and your wife, (I didn't catch your wife's name).
Your guidance is greatly appreciated.
Now, per our discussion, if you could just give me the correct medical terminology.
From my notes I made of our discussion:
=I should state that I want a cuffless tracheotomy. Is that how the terminology goes?
And suppose they were to do a trach with a cuff, (without my knowledge). Could it
then be converted into a cuffless trach?
=I have that long list of items where you had replied to Katekath. I don't know if you
can answer this question being that you are Canadian. But perhaps someone else
here who has a trach/vent can answer this, who is in the USA? Joel made a list of
NECESSARY items you MUST have at all times, having to do with maintaining a
trach with a vent. It is a VERY good list and very detailed. My question--do the
health insurance companies usually cover being at home with a portable vent, since
it is necessary due to a trach, plus all the equipment and supplies required?
This includes a second set of everything, as from what Joel told me, when you clean
one set, i.e. the circuit, you trade out the old for a new clean one, then clean the
old one. It also includes a suction machine and a humidifier.
=And from what you told me, you get suctioned 2 to 3 times per day. And you said
that when you get a cold, then get it about every hour. Out of curiosity, how
often do you get sick? Because I am on chemo, I do not have much public contact,
as on this particular chemo, Cytoxin, it does purposely bring my white blood count
down to 2, so that my auto-immune system is not destroying my nerves. So, it
is very easy for me to get an infection. I have not had a cold in about 3 years,
(knock-on-wood). My doctors fear this, that if I were to get even a cold, it would
go into a lung infection, and I might not be able to fight it off.
=So, Joel, just jot down the correct names of things--you see what I am trying to
say in my first post on this thread.
Thanks again,
KEDASO
(Ken)
 
Hi Ken, it was good talking to you and my wife's name is Christine.

Here is what happens, on both sides of the border, they put in a cuffed tube first, usually a #8 Shiley. Then several days later it can be changed. At this point I got a #6 Shiley cuffless tube, this a smaller tube which makes it easier to talk because more air can get past.

The Shiley tubes are rigid and after several months it was irritating my trachea so I got a different tube which is pliable. See one of the links below.

I have had one cold in 2 years.

Here are a couple of links to pictures I posted on this forum.

https://www.alsforums.com/forum/showthread.php?t=6488&page=2 see post #23.

https://www.alsforums.com/forum/showthread.php?t=7645&highlight=pictures&page=2 see post #18.

My experience getting a trache.

https://www.alsforums.com/forum/showthread.php?t=1531&highlight=vent&page=2 post #27.

I took a few pictures of our setup in our bedroom. I will explain what is happening in each picture, hope it will help clear up some misconceptions about caring for someone with a vent.
In addition to what I have tried to explain in each picture we have another vent mounted on my powerchair and 1 of everything in a packsack we take with us when we go out.

bedroom1.JPG

This is our bedroom. Starting at the left you see an end table that our humidifier and vent are on along with the circuit, including exhalation manifold. Beside the table, on the floor, is a UPS (uninterruptible power supply) which keeps the vent going if the power goes out. Then, on the table, is the stationary suction machine. On the floor beside that is a packsack that has a portable suction machine and a set of supplies needed when we go out. Then on the shelves are the supplies we use. On the floor beside that is the charger for my powerchair.

bedroom2.JPG

Humidifier and Vent along with the circuit, including exhalation manifold which is almost hidden on the right side of vent (green color). The UPS is on the floor and provides an additional 6 hours on top of the 7 hours the battery in the vent lasts if the power goes out.

bedroom3.JPG

This is the stationary suction machine. It stays right here for when we need to suction at home, if we go out we have a portable (battery powered) machine in the packsack we take with us.

bedroom4.JPG

On this stand we have supplies and spare components. On the top shelf starting at the left you see 3 containers with red lids (they contain peroxide for cleaning the inner canula if it has to be changed, saline for cleaning the catheter after suctioning and spare catheters) and a bottle of saline solution and a box of gloves. We have spare parts for every possible situation that may come up. Spare circuits (air hoses), exhale valves, tracheostomy tubes, inner canulas (tubes that go inside the trache tubes), catheters (the long skinny red thing you can see bottom right on top of container that are used for suctioning), ties for holding trache tubes and Q-tips and dressings.

Here is the vent on the back of my powerchair.

vent1.JPG


vent2.JPG


Here is a link for a newspaper article on us:
https://www.alsforums.com/forum/showthread.php?t=7664&highlight=Vancouver
 
Thank you so much, joel

You explained everything so clearly.
I read everything, including the links to past posts.
So, I do have some questions.
=A very important question. Since you are on a Socialized Health System, I am assuming everything shown was covered by your health care system. Or did you buy anything shown?
Being from the USA, I do have health insurance, and as a back-up I have Medi-Cal, which is what they call Medicaid for the state of California for disabled people.
However, the insurance companies have a bad attitude. When I first attempted to get an electric wheelchair, as my arms had become to weak to push a manual wheelchair, it took one and one-half years of going through "red tape" trying to get it. Since I can walk a short distance in the house by holding on to things for balance or using a walker, (but I need the wheelchair for long distances or going out), the insurance company came out and said point-blank, that they didn't care what happened or what was needed outside the home, they only would take care of what was needed INSIDE the home only. So, it went back and forth between my team of doctors and the insurance company. And it was fought with both my own insurance company, and Medi-Cal.
FINALLY, the end result was that my insurance company covered one-half of the cost, and Medi-Cal covered the other half. YEESH...
So, now I get to the question about the vent. You have that whole kit for going out.
A portable vent, (humidifier?), and portable suction machine. My question is, for here in the USA, would the insurance company/Medi-Cal cover basically two of everything?
Will the cover the portable machines so you can go out? If they don't, then how would you get to doctor's appointments if sick or for a treatment? I may start a new thread to ask this of people from the USA.
=When I was reading through the links you provided, I saw something about a cough-assist machine. What is that, as you don't show it that you have one.
=Since you mention it is better to get the trach when you are healthier versus being in dire straits and in an emergency. When do you know it is that time to get one?
My breathing is becoming shallower and shallower. My O2 sat. is down to 80. I am having my blood gasses drawn on Monday to see my CO2 status, and I guess they are thinking I may need oxygen with my bi-pap. I know, and have been told by my team of doctors, that a vent is in my future, which is what started all of my posts here, as I mentioned on the phone to you, that the doctors describe living with a vent as bad. I am opposite to that, having "met" you Joel, and now have your view. But, like I just said, how or when do you know it is the time to get one?
Again, thank you for the photos and explanations--it helped me so much!
All the best,
KEDASO
(Ken)
 
No, our health care system does not cover equipment of any kind. We get things like our wheelchairs, walkers, lifts, etc. from the loan closet at our ALS Association. They are incredible with what they provide as a loan.

The respiratory equipment comes from a separate government agency that was setup to help those that needed this equipment, it is called PROP (Provincial Respiratory Outreach Program). Also, both my vents are the same, so they are both very portable. You cannot have a trache and need a vent without a backup, what happens if it was to fail? So, I believe they would provide you with 2.

Cough Assist machines are just that, they help you cough by filling your lungs with air and rapidly sucking it out. I do not have one of these but believe they are a really good thing to have.

You will know when you need a vent as you will be having trouble breathing, it will become obvious.

Oxygen is not a good idea as there is nothing wrong with our lungs, it is our diaphragm that is at fault and we cannot inhale enough air so all we need is more air and we will not have trouble with O2 or CO2.

Hope that answers a few more questions.
 
I forgot to describe what to use for humidity control during the day.

Obviously we cannot use a big humidifier so we use something called an HME (humidity moisture exchanger) which traps the humidity when you exhale so when you inhale it moisturizes the incoming air.

It is the blue thing in the picture and just below it is the exhale valve (white thing).

HME.JPG
 
Joel,

That is a very nice picture of the two of you :)
 
Rose beat me to it, great picture of a good looking couple!
 
Hi Joel
I'll chime in with Rose and Barry...a great pic of you two!
Also the info and pictures of the equipment sre very helpful in understanding some of the practical side of it!
Rick
 
I think Joelc and his wife need to be seen by a national ALS group, spinal cord patients, and the general public. I just think what you are doing Joel is nothing short of inspirational and trailblazing. For some reason you have a way about you that has just given myself, and so many others a feeling of life with this disease. I really think Canada should put you on a worldwide audience show, you would make so many others feel that YES they can.. You are such a low key good human being, but you are also a gift to all of us. Your wife and you just make us all believe in CAN DO... and with that, I feel like so many of us CAN DO...
 
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