Re: CPAP versus Trach for breathing problems

[Guest guest]

Need some advice!

My husband, , is in the hospital for the third time this year (Critical

Care Unit) and each time breathing problems were the underlying problem.

Two times he passed out and stopped breathing, the third time he stopped

breathing while lying in bed and rescue breathing had to be done prior to

the ambulance arriving. All three times it took awhile for to respond

to assisted breathing and each episode has been very serious. and I

are faced with a decision about a procedure recommended by his Dr.

(Pulmonary specialist). They would like to put do a tracheotomy on Monday,

May 20th. We would prefer an alternative such as the C-Pap. A sleep study

was done a few years ago without a diagnosis of sleep apnea. has

never read about anyone getting a trach on this list and told the doctor

that all seemed to do fine with a C-Pap. The doctor told him to get some

rest and to stay away from his computer this weekend. The doctor and his

nurse have observed while resting and he has had episodes where he has

stopped breathing. His nurse also said that he has had an episode while she

was talking with him. He is short of breath and does better breathing

through his mouth. The doctor did say that if we decided to go with the

C-Pap that would be required to use it 24 hours for his own safety.

Thank you for your advice and any experience you have had with this.

was diagnosed in 1999 with Shy-Drager.

God Bless!

Shirley and Markham

-

>

>I had a sleep study done, and although I had figured he would say a

>C-Pap or Bi-Pap, I was completely floored by what I was told. He said

>I had some " minor " instances that he was not too worried about at the

>time. He was more concerned over the episode of prolonged oxygen

>deprivation that showed up. He told me that along with the charts I

>had for him he also wants me to doc. everytime I wake up either not

>breathing or gasping for air. He said he could probably get approval

>for oxygen on one doc time, but it would be easier for 2 or 3 times.

>Okay, I don't remember anyone hear saying anything about this

>problem at night. He did say that it is uncommon for them to doc this

>problem on a sleep study. So I am wondering - Could he be talking

>about the central apnea that Fisher has mentioned a couple of

>times. Just strange. Other than him still trying out new combo of

>med, things are fairly okay. Just wondering is all

>

>love to all and happy valentine's day and God Bless

>wanda

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

I had some nasty (frightening) episodes before changing my

sleeping position. I sleep nearly sitting up and bolster my legs to

not slide down, a slight incline was apparently to subtle for me.

I'm still having the odd problem when my tongue seems to block my airway,

tilting my head back puts me back on track (no idea why this happens,

tongue spasm??) I've known people to do quite well with tracheotomy

(although these were not for MSA) and they can be removed later if other

methods are found, meantime alive is better than dead.

At Saturday 5/18/02 04:48 PM, you wrote:

Need some advice!

My husband, , is in the hospital for the third time this year

(Critical

Care Unit) and each time breathing problems were the underlying

problem.

Two times he passed out and stopped breathing, the third time he

stopped

breathing while lying in bed and rescue breathing had to be done prior

to

the ambulance arriving. All three times it took awhile for to

respond

to assisted breathing and each episode has been very serious.

and I

are faced with a decision about a procedure recommended by his Dr.

(Pulmonary specialist). They would like to put do a tracheotomy on

Monday,

May 20th. We would prefer an alternative such as the C-Pap. A

sleep study

was done a few years ago without a diagnosis of sleep apnea.

has

never read about anyone getting a trach on this list and told the

doctor

that all seemed to do fine with a C-Pap. The doctor told him to get

some

rest and to stay away from his computer this weekend. The doctor

and his

nurse have observed while resting and he has had episodes where he

has

stopped breathing. His nurse also said that he has had an episode

while she

was talking with him. He is short of breath and does better

breathing

through his mouth. The doctor did say that if we decided to go with

the

C-Pap that would be required to use it 24 hours for his own

safety.

Thank you for your advice and any experience you have had with

this.

was diagnosed in 1999 with Shy-Drager.

God Bless!

Shirley and Markham

-

>

>I had a sleep study done, and although I had figured he would say

a

>C-Pap or Bi-Pap, I was completely floored by what I was told.

He said

>I had some " minor " instances that he was not too worried

about at the

>time. He was more concerned over the episode of prolonged

oxygen

>deprivation that showed up. He told me that along with the

charts I

>had for him he also wants me to doc. everytime I wake up either

not

>breathing or gasping for air. He said he could probably get

approval

>for oxygen on one doc time, but it would be easier for 2 or 3

times.

>Okay, I don't remember anyone hear saying anything about this

>problem at night. He did say that it is uncommon for them to

doc this

>problem on a sleep study. So I am wondering - Could he be

talking

>about the central apnea that Fisher has mentioned a couple

of

>times. Just strange. Other than him still

trying out new combo of

>med, things are fairly okay. Just wondering is all

>

>love to all and happy valentine's day and God Bless

>wanda

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

I had some nasty (frightening) episodes before changing my

sleeping position. I sleep nearly sitting up and bolster my legs to

not slide down, a slight incline was apparently to subtle for me.

I'm still having the odd problem when my tongue seems to block my airway,

tilting my head back puts me back on track (no idea why this happens,

tongue spasm??) I've known people to do quite well with tracheotomy

(although these were not for MSA) and they can be removed later if other

methods are found, meantime alive is better than dead.

At Saturday 5/18/02 04:48 PM, you wrote:

Need some advice!

My husband, , is in the hospital for the third time this year

(Critical

Care Unit) and each time breathing problems were the underlying

problem.

Two times he passed out and stopped breathing, the third time he

stopped

breathing while lying in bed and rescue breathing had to be done prior

to

the ambulance arriving. All three times it took awhile for to

respond

to assisted breathing and each episode has been very serious.

and I

are faced with a decision about a procedure recommended by his Dr.

(Pulmonary specialist). They would like to put do a tracheotomy on

Monday,

May 20th. We would prefer an alternative such as the C-Pap. A

sleep study

was done a few years ago without a diagnosis of sleep apnea.

has

never read about anyone getting a trach on this list and told the

doctor

that all seemed to do fine with a C-Pap. The doctor told him to get

some

rest and to stay away from his computer this weekend. The doctor

and his

nurse have observed while resting and he has had episodes where he

has

stopped breathing. His nurse also said that he has had an episode

while she

was talking with him. He is short of breath and does better

breathing

through his mouth. The doctor did say that if we decided to go with

the

C-Pap that would be required to use it 24 hours for his own

safety.

Thank you for your advice and any experience you have had with

this.

was diagnosed in 1999 with Shy-Drager.

God Bless!

Shirley and Markham

-

>

>I had a sleep study done, and although I had figured he would say

a

>C-Pap or Bi-Pap, I was completely floored by what I was told.

He said

>I had some " minor " instances that he was not too worried

about at the

>time. He was more concerned over the episode of prolonged

oxygen

>deprivation that showed up. He told me that along with the

charts I

>had for him he also wants me to doc. everytime I wake up either

not

>breathing or gasping for air. He said he could probably get

approval

>for oxygen on one doc time, but it would be easier for 2 or 3

times.

>Okay, I don't remember anyone hear saying anything about this

>problem at night. He did say that it is uncommon for them to

doc this

>problem on a sleep study. So I am wondering - Could he be

talking

>about the central apnea that Fisher has mentioned a couple

of

>times. Just strange. Other than him still

trying out new combo of

>med, things are fairly okay. Just wondering is all

>

>love to all and happy valentine's day and God Bless

>wanda

>

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Shirley,

I just read your posting about a trach for your husband. There was a man

named Tom on the list several years ago that had SDS and also had a trach. He

said that it had saved his life and he had adjusted very well to it. I

believe that it was done at Mayo.

He was known as " that's my story, Tom. " You may find it in the archives.

I do hope that you can come to a comfortable decisison for both you and your

husband and we will be praying for both of you.

Hugs,

Jean & Chrissie

[Guest guest]

Dear Shirley,

I just read your posting about a trach for your husband. There was a man

named Tom on the list several years ago that had SDS and also had a trach. He

said that it had saved his life and he had adjusted very well to it. I

believe that it was done at Mayo.

He was known as " that's my story, Tom. " You may find it in the archives.

I do hope that you can come to a comfortable decisison for both you and your

husband and we will be praying for both of you.

Hugs,

Jean & Chrissie