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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 Joel, and to others in a similar situation,
As I had mentioned a few days ago, I have advanced CIDP, which is a sister disease of ALS. It has affected my autonomic system, including hitting the phrenic nerve with hypoxemia. And advanced CIDP, is similar to facing what you guys are faced with.
I have been told, that going onto a vent., is not too far off in my future. I was given two years left to live, two summers ago. So, I have been on "borrowed time". However, I have been on chemotherapy for 14 months up to October, (they had to stop for 5 months to give my bone marrow a break), and am about to start up on it again in three weeks, and my neuro. thinks it has slowed the progression a little bit, and added about another two years. However, my breathing is becoming more and more shallow.
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So, I am now being forced to make the decisions now, and told I must have my Advance Directive, (living will in some states), filled out. My doctors were hinting to me how living with a vent. was not a good quality of life, and that perhaps I should put in that I did not want it.
Joel, I am glad I came to your forum, and for your answers. Over at the CIDP forum, most people with CIDP get help with the normal protocols of treatment, and are able to go into remission, or have a status-quo. However, there is 5% of people with CIDP where the normal protocols of treatment do not help, and the disease keeps progressing, which is what I fall under. So, because there are only 5% of us, it is hard to get answers to some of the things I am faced with and up against, such as my questions about living with a vent.
My choice is now that I will agree to a trach/vent, if I am able to have a portable one. I am not doing this for myself--it is for the people that I care about, and what my "leaving" would affect them. I thank you for your posts to me, since I think I can be able to have a decent quality of life on the vent, such as you do.
Joel, I have been reading some of the posts here. I will make a comment on a separate thread about some of the posts I ran across. But, I ran across a post you made to
Katekath a few months ago. She is the daughter of a mother with ALS, and she was requesting help and guidance that she be ready to assist her mother who will be on a vent. when she came home from the hospital.
Your post to her:
"Your Safety and Comfort
The following is a review of some of the supplies and
procedures required to help ensure your safety and
comfort.

Ventilators
BACK-UP SUPPLIES
Always have the following available in case of an
emergency:
• Bacterial filters (front)
• Bagging unit
• Circuits, including exhalation manifold
• Flex hoses
• Gloves
• Intake filters (back)
• Spare exhalation valve (balloon)
• Spare tracheostomy tube
• Suction catheters
• Tracheostomy adapters
• Water traps
Circuit changes and cleaning
Replace your entire circuit (except the exhalation
manifold) every 12 months. We recommend that you
clean your circuit every week following this procedure:
• Disassemble the circuit
• Wash it in warm soapy water using mild soap
• Rinse
• Soak it in a solution of 1 part vinegar to 3 parts water
for 30 minutes
• Rinse
• Hang to dry
Humidifiers
Humidifiers increase the vapour content of the air you
inhale. Here are some recommendations on using them:
• Always clean and disinfect according to the
manufacturer’s directions
• Never leave your bedside humidifier turned on when
you are not using it
• Clean and replace the water everyday using only
distilled or de-mineralized water. This will extend the
life of your humidifier chamber.
• If sterile water is required, the distilled or demineralized
water must be boiled and left to cool

Use Distilled Water
If your humidifier contains scale or
crusty deposits, or is covered by a white
dust, then you are probably using
water that contains minerals. It is
important to use the right type of
water, because minerals can result in
the growth of micro-organisms, and
will also shorten your humidifier’s life.
Tap water always contains minerals. Only use it if you
have no de-mineralized water available. Use bottled water
that is labeled “distilled.” This can be purchased at your
local drugstore. Do not use bottled waters that are labeled
“spring,” “artesian” or “mineral” because they may contain
minerals. Water filtering systems like those you place on
your refrigerator remove some odours and chlorine, but
are not effective in removing the minerals that cause
scaling and deposits.
Batteries (for LP6 and LP10 Users)
Checking the internal battery’s charge level: Unplug your
ventilator from its wall socket or wheelchair battery
connector and switch it from standby to assist/control
mode. Press and hold the battery test button and watch
the patient pressure meter needle. The numbered scale
indicates the percentage of battery charge level. For
example, if the needle points to 100, this means it is 100%
full. Always charge the internal battery if it is less than 50%
full.
Testing the power level of your internal battery: You
should test your internal battery once a month. To test,
make sure your ventilator has been fully charged and you
are not using it. Disconnect your ventilator from the wall
socket or wheelchair battery and let it run until the low
power alarm comes on. Note the start and stop time of
the test. If the test result is under 45 minutes call PROP.
The battery probably needs replacing. Make sure you
recharge the battery after testing so it is ready to use.
Charging: Disconnect your ventilator from the
wheelchair battery and plug it into a wall outlet. Charge
your battery daily. Charging your wheelchair when your
ventilator is connected will not fully charge your
ventilator’s internal battery.
Liquids and Your Ventilator
• Keep all liquids away from your ventilator
• Rain and snow can damage your ventilator if it is not
properly covered. Contact PROP for advice on how
to cover your ventilator to protect it in wet weather.
• It is essential to call PROP anytime liquid is spilled
on your unit. Do so even if the unit appears to be
functioning normally.

Client Tips
• Check your respiratory supplies on a monthly basis.
Keep enough stock on hand so that you only need to
order supplies a few times a year. This way there is no
panic when you run short or something is no longer
available. (Jeanette Andersen)
• Never, ever go anywhere without your Ambu bag.
(Alan Hurst)
• I have a two-wheeled cart (the kind used by seniors
for shopping) that a friend bought in a thrift store for
$3.00. It’s very handy for transporting a back-up
ventilator to and from a vehicle and it makes it so
much easier for an attendant. (Jeanette Andersen)
• Always take an emergency kit and a portable suction
machine with you. Check both regularly to make sure
they work. Carry extra suction catheters in your
backpack. (Jeanette Andersen, Johanna Johnson, and
Heather Morrison)
• Take a back-up vent if possible, particularly if you are
going on a long trip. This will increase your comfort
and your attendant’s. (Jeanette Andersen, Johanna
Johnson, and Heather Morrison)
• Carry a cell phone. If you travel on your own you may
need a voice-activated phone. Check that your phone
is well charged before you go out. If you use a prepaid
system make sure you have time left on your
account. (Jeanette Andersen, Johanna Johnson, and
Heather Morrison)
• When I travel I always pack an extension cord with a
couple of plugs. You would be amazed where hotel
rooms have their plugs in the wall: sometimes your
ventilator plug will not reach and many hotels do not
have extension cords available for their guests. (Zosia
Ettenberg)
• Write down all your vent settings and store them in a
safe place. Inevitably you’ll get your vent back (from
repair) and the settings will have been changed.
(Johanna Johnson)
• Be organized and informed. Know your equipment
and how to troubleshoot for problems. Know your
vent settings. (Jeanette Andersen)
__________________
ALS does not have to be Fatal.

God Bless! Joel "
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Joel, after reading this list, now it made me a little scary of living with a vent. It sounds so complicated--I wonder will I or my lifepartner be able to cope with it. Your initial answers to me, sounded like it was not too hard to live with it. But, now I am a little wary after reading the list. Please advise.
All the best,
KEDASO
(Ken)
 
Ken, please relax, like anything the initial sounds scary but very honestly it is not a big deal at all! When you read through this a few times it will make more sense and diminish in its complexity.

You need a few backup supplies just in case, but I have never had to use them yet.

The first couple of weeks are an adjustment time but after that everything gets into a routine and is easy. Doctors and medical people will try to scare you to death in an effort to talk you out of it - do not listen to them.

Please give me your phone number and I will call you.
 
Thanks Joel...

Hi Joel,
Thank you for responding.
Yes, I would like to talk to you.
But, I have been posting these questions and guidance assistance for the past few days, by myself, and I want to get my life-partner involved with this, since I think my final decision with involve him as well as me, since I will have to rely greatly on him when I reach that point in my life, just as you rely on your wife for assistance.
So, I just printed everything requested/posted here, and your replies.
I just got done talking to him about, which is a subject he doesn't like to talk about. It was 9 pages long. I told him I want him to read it over, and to please let it sink in. I told him he will be my caretaker when I reach that point. And I must complete my Advance Directive before my chemo this time, and that is only 3 weeks away.
We have been together for 28 years, and if he is afraid to be the caretaker or doesn't want to face it, I must take his view into my final answer. Right now, he has become very silent, and I told him he does not have to read it all right now, but to read it over the next few days, and to really think about it. I told him the gist of it.
Yes-I will provide you my telephone number, but after I have a discussion with him, because I want to bring him into the discussion with you. I am sure he will have questions just like I do.
I even have a toll-free number, but I am not quite sure it will work for people calling from Canada. But we can try it. I will contact you in a few days, after my partner and I talk about the situation, and I am sure he will want to talk with you or your wife.
Thank you Joel, all the best to you.
KEDASO
(Ken)
 
That is good thinking on your part Ken.

It would be good for all 4 of us to be on the phone at the same time, my wife is happy to share her experience being a caregiver and how much it did scare her at first, now she laughs when she thinks back.

When the time is right send me a personal message with your number.
Just click on my name and a menu will drop down, select - send a personal message to joel.

Take care.

PS: As always, the offer is there to anyone who wants to ask us questions.
 
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