Re: CPAP - OT(Kathy in Arlington) VERY LONG

[Guest guest]

Hi ,

I hope that you won't mind me using your response to me as a

" springboard " to voice my concerns regarding breathing issues, in a

positive way, for all the newer listers! Your post touched me to

restate my views on the whole issue of breathing as it applies to us

morbidly obese people, and especially as we are seriously committing

ourselves to this D/S surgery (or any surgery for that matter).

I know that 7 is a very low setting for a CPAP, and I AM grateful for

that, but my problem is shallow breathing, and not obstruction. My

body simply " forgets " to breathe. And I have resistance to falling

asleep. It's a little like dying every time you go to sleep, and when

you DO go to sleep you often wake up in the middle of the night and

feel a need to sit up or walk around because you're so starved for

air! No wonder we might resist going to sleep! I remember getting up

in the middle of the night as a skinny child of eight, wandering

around, not sure why I was doing it, but unable to sleep. I also

developed avoidance behavior about sleep, i.e.. reading all night in

the seventh grade and getting up school with one or two hours of

sleep. So this is a long time problem, NOT just a symptom of obesity.

My father was never tested for this but had all the same symptoms I

have had.

I watched my Dad (also an MO person, but 90 lbs. LESS than I am) die

in the hospital with many complications. One of them was that he also

had shallow breathing, but it was undiagnosed, and because it was not

taken into account, when he had a relatively routine surgery on his

knee, he went too far under the anesthesia and NEVER really came back

again. His body just couldn't ever jump start again!

One of my regrets about his death is that I had just had my own sleep

test and had gotten my CPAP at about the same time that he went in to

the hospital, so I was alert to the dangers of not being treated and I

tried to let the attending doctors know that he was in trouble, but I

couldn't get any one to listen for several days. As soon as I was

able to see him, and saw his lack of color, I started to YELL at the

Dr.s about getting him more oxygen and having him elevated more etc.,

getting him a bariatric bed ( he was obese too) etc., and bring them

information about this condition, but it took them a while to come up

to speed on it, and I think that all of the above made his recovery

impossible. They had him out of surgery lying relatively flat and

even though they gave him oxygen it was too little too late. One of

the main communication problems was that Dad wasn't being cared for by

his own MD. He was on vacation up here in WA, away from his doctor in

Lincoln City, OR, and so the guy on call handled him for the first

several critical days and HE didn't have a clue.

My opinion is that with proper preparation and knowledge of this

condition, the surgeon and the hospital could and should have been

able to prevent those problems. They have options now to give not just

oxygen, as is standard, I think, during an operation, but to give

ELEVATED amounts. I have read that elevated amounts of oxygen given

increase the recovery of ALL patients from surgery. I think some

hospitals don't do this as standard practice because of the law of

entropy. Its one more thing to do, and they've done it the other way

" just fine " for eons. WL surgeons DO pay attention, and so require

sleep tests. Be glad for this!!!

I guess the main point of what I'm saying here is:

1) Find out as many of your body's particular needs, even if the don't

register as SEVERE, as you can. Find them out BEFORE you go into a

routine or emergency surgery, even list them out with your PCP for

future reference and make sure that your family, or advocate can

address them for you if you should ever be incapacitated.

2) Find someone who can speak up for you if you are incapacitated and

who will do so QUICKLY, LOUD and LONG till the docs GET IT!

3) Don't ASSUME that because you are in a hospital, someone will know

what to do, or even what is best to do. Plan on finding out as much

as you can and TELLING them what you want/need.

I realize that I did all I could at the time for my Dad and I'm not

punishing myself for his death, but I do think that taking the

breathing issue seriously is a very big priority for all of us MOs.

And I REALLY appreciate that the WL surgeons, for the most part, take

it seriously too!!

Kathy in Arlington