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)
:?:
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)
:?: