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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,
Sorry this is long, but I need to explain first what the problem is.
There are three sister diseases: MS, ALS, and CIDP.
I have CIDP. There are people with CIDP, where the normal protocol for treatment doesn't work, which is 5% of the people with CIDP.
I am in that 5% group. I am now on chemotherapy, which is the last-ditch effort to try to slow the progression of the disease. I had been on it for 14months, of which from October08-March09 I had to stop to give my bone marrow a break. I am about to resume the chemo in 3 weeks.
The CIDP attacked my autonomic system, attacking the various nerves controlling my organs and systems in my body. Two summers ago, two of the doctors on my team of seven doctors, told me I had about two years left to live. My neuro. told me a couple of weeks ago, that he feels the chemo added about two more years left of life.
I can walk short distances, and have an electric wheelchair for long distances.
The CIDP attacked the nerves controlling my heart, (I have tachycardia); my digestive and swallowing system; (am on various pills to help the food digest and swallow, have a hospital bed to keep me elevated so I don't choke); my bladder, (I have a neurogenic bladder and catheter); have muscle spasms and twitches, (one pills again), neuro. pain, (more pills again); tremendous fatigue, (they now have me on speed to try to keep me awake during the afternoons); loss of appetite and nausea, (more meds including the pill form of marijuana); and the worst part is that it hit my phrenic nerve which controls the diaphragm, (which has left me now with very shallow breathing and hypoxemia, with my O2 saturation is now around 80, and they are now deciding if I will need to go on oxygen, and I also have a Bipap to assist me when unable to breathe well).
---
That is what brings me here.
My pulmonologist told me this is what will "do me in". Because I have such shallow breathing, they think that all it will take is a bad cold or flu, and I will be unable to fight it off, and die from a lung infection.
They told me I am not too far off from going on a vent.
My rheumatologist, who is in charge of my chemotherapy, stated this time that I MUST have my Advance Directive filled out and on file with the hospital before I start my chemo again. In some states, it is called a Living Will.
The section that brings me here, is where it asks me about to what extent do I want the hospital/doctors to continue my life on life support, which has to do with living with a ventilator.
We have our own website and forum, for people with Guillain-Barre Syndrome and CIDP. When I posted this question there for input and guidance, I had some good replies, but especially from one person who suggested I come here at the ALS forum, and ask this question, since many depend on ventilators/respirators.
If I remember right, one time I was in the hospital a few years ago, a respiratory tech had told me there are people who live with a portable vent., so you can still live a somewhat normal life in your home, and get around in my electric wheelchair with the portable vent. IS THAT RIGHT? Though, I remember, the tech. had said lung infections are easy to get while on a vent.
So, I need to put in there, if I want them to continue my life on a vent., and if so, for how long, and what kind. The person who sent me here, suggested I talk with a person here named Joel, who is living on a vent. And anyone else on a vent.
How easy is it to live with? Do you get infections easy? How good of a prognosis is it while living with the vent.? What is it like living with the vent., and how easy or what are you able to eat or talk?
I would appreciate it greatly for some guidance here, since my chemo starts again in 3 weeks. I have to say whether I want them to continue my life with a respirator, or to list me as DNR, (do not rescusitate<spelling>).
Thank you all who respond.
KEDASO
(Ken)
:?:
 
Hi all,
Sorry this is long, but I need to explain first what the problem is.
There are three sister diseases: MS, ALS, and CIDP.
I have CIDP. There are people with CIDP, where the normal protocol for treatment doesn't work, which is 5% of the people with CIDP.
I am in that 5% group. I am now on chemotherapy, which is the last-ditch effort to try to slow the progression of the disease. I had been on it for 14months, of which from October08-March09 I had to stop to give my bone marrow a break. I am about to resume the chemo in 3 weeks.
The CIDP attacked my autonomic system, attacking the various nerves controlling my organs and systems in my body. Two summers ago, two of the doctors on my team of seven doctors, told me I had about two years left to live. My neuro. told me a couple of weeks ago, that he feels the chemo added about two more years left of life.
I can walk short distances, and have an electric wheelchair for long distances.
The CIDP attacked the nerves controlling my heart, (I have tachycardia); my digestive and swallowing system; (am on various pills to help the food digest and swallow, have a hospital bed to keep me elevated so I don't choke); my bladder, (I have a neurogenic bladder and catheter); have muscle spasms and twitches, (one pills again), neuro. pain, (more pills again); tremendous fatigue, (they now have me on speed to try to keep me awake during the afternoons); loss of appetite and nausea, (more meds including the pill form of marijuana); and the worst part is that it hit my phrenic nerve which controls the diaphragm, (which has left me now with very shallow breathing and hypoxemia, with my O2 saturation is now around 80, and they are now deciding if I will need to go on oxygen, and I also have a Bipap to assist me when unable to breathe well).
---
That is what brings me here.
My pulmonologist told me this is what will "do me in". Because I have such shallow breathing, they think that all it will take is a bad cold or flu, and I will be unable to fight it off, and die from a lung infection.
They told me I am not too far off from going on a vent.
My rheumatologist, who is in charge of my chemotherapy, stated this time that I MUST have my Advance Directive filled out and on file with the hospital before I start my chemo again. In some states, it is called a Living Will.
The section that brings me here, is where it asks me about to what extent do I want the hospital/doctors to continue my life on life support, which has to do with living with a ventilator.
We have our own website and forum, for people with Guillain-Barre Syndrome and CIDP. When I posted this question there for input and guidance, I had some good replies, but especially from one person who suggested I come here at the ALS forum, and ask this question, since many depend on ventilators/respirators.
If I remember right, one time I was in the hospital a few years ago, a respiratory tech had told me there are people who live with a portable vent., so you can still live a somewhat normal life in your home, and get around in my electric wheelchair with the portable vent. IS THAT RIGHT? Though, I remember, the tech. had said lung infections are easy to get while on a vent.
So, I need to put in there, if I want them to continue my life on a vent., and if so, for how long, and what kind. The person who sent me here, suggested I talk with a person here named Joel, who is living on a vent. And anyone else on a vent.
How easy is it to live with? Do you get infections easy? How good of a prognosis is it while living with the vent.? What is it like living with the vent., and how easy or what are you able to eat or talk?
I would appreciate it greatly for some guidance here, since my chemo starts again in 3 weeks. I have to say whether I want them to continue my life with a respirator, or to list me as DNR, (do not rescusitate<spelling>).
Thank you all who respond.
KEDASO
(Ken)
 
Hi Ken, yes I live with a vent and it is really easy, despite what they tell you!

Having a vent gave me my life back as now I can go anywhere and do many things I could not do before a vent because I was struggling to breathe. As far as infections go I have found there is less chance with a vent than there was before because my breathing was so shallow that I was not able to get secretions out, now with the vent my lungs are expanded from getting enough air and the secretions are less of a problem. Therefore infections are less likely to happen than before a vent.

The units are small and quiet so they are simple to live with. I have mine hooked up to my powerchair batteries and it lasts about 2 days before needing to recharge.

I hope this answers a few questions but ask away and I will be happy to answer.
 
Thank you for responding, Joel.

Okay--I'm going to hit you up with a lot of questions. I know it is not too far off in my future, and my doctor is pushing me to fill out my Advance Directive, to decide do I want a trach/ventilator, feeding tube, etc., to keep me alive.
I want to consider the quality of life, with having a trach/ventilator.
---
Okay-so, from what I understand about it, because you have the tracheotomy, the tube goes directly to the lungs. Thus, your throat can still be used for eating--am I right or wrong on that?
So, are you able to eat food? And if so, I assume it has to be a soft diet/all food through a blender, so you don't choke, right? Or do you eat regular food?
Can you still talk while being on the vent? If so, how would that work?
Are you able to talk on the phone?
I am assuming that you are the one answering me on the computer, and not your wife. So, does that mean you can move your electric wheelchair to the desk or table, and work on your computer?
You said you can hook up the vent to your wheelchair batteries, if you want to go out. Is that easy to do, and did the respiratory tech show you how to do that?
And I think you said you're allowed 2 hours on battery, then it must be plugged in, is that right?
I was told be a resp. tech., that the vent requires constant cleaning, to avoid mucous build-up and infections. Is that right? How would you, or if it is even possible, to cough? I guess you can't cough because the machine is doing the breathing for you, right?
And excuse a personal question, but how long did they say being on the vent will advance your life? If you don't want to answer that, please don't.
I am sorry for all these questions, but knowing this is in my future--it is best to hear it from someone who actually has it in place, and what your quality of life is.
Two of my doctor's have been pessimistic about living with a vent. So, please do tell me about your views.
Thanks so much,
KEDASO
(Ken)
 
You are right, I still eat normally and eat whatever I want.
The only criteria is that you had to be eating before, if you were choking before that will not change.

I eat steak, hamburgers, tacos, absolutely anything I want.

I can still talk because I could talk before, I have a cuffless trache tube so some air can come past and reach my vocal chords. I talk on the phone and to anyone while I am out.

Yes, I am the one responding and wheel up to my computer and use it. My hands do not work well so I mostly use a headmouse with a program called Dasher.

The RT wired my chair to power my vent, all the time I am in my wheelchair it powers my vent. But the vent does have an internal battery that lasts 8 hours by itself. The wheelchair batteries last 2 days.

I need suctioning about 2 to 3 times per day. Lots of days I do not have to be suctioned at all. As far as coughing, my diaphragm is too weak but with my wifes help, pushing on my chest at the right time, I can cough a bit. No need to cough - that is what proper suctioning does.

My personal belief is that getting a vent will extend your lifespan indefinitely.

My life is great - I do have fantastic Quality of Life! But it is a personal decision to accept it and choose to have good quality.

I also found most medical people were very pessimistic about life on a vent, even my personal doctor told me I would not want to do this. I searched for 1 year to find medical people that had a different outlook and finally did.

I am very satisfied with my life and am not afraid to endorse technology to make my life easier and the lives of my caregivers as well.

If you would like I can call you so we can talk more in detail and you can talk to my wife and hear what it is like to look after someone with a trache and vent.

Hope this answers a few of your questions.
 
Joel I am so pleased with your answers and help offered to Ken. I suggested that he come over here and ask some questions and I mentioned your name as being one of the good guys who happens to have a vent. Thanks for being such a stellar human being.
Laurel
 
Thanks Laurel,

I am glad you recommended this site and I hope we can help him with his difficult decisions.

Bless you!
 
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