Re: I have a trach. . .
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Re: I have a trach. . .

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Posted by flip on July 22, 2008 at 18:28:32:

In Reply to: Re: I have a trach. . . posted by learian on July 22, 2008 at 12:06:24:

I am able to speak with authority only about myself but I know something about the history of others in the "hole in the throat gang" and I would say we all were in the same situation or close to it.

In my case, I had a steady health decline for twenty seven years with no reason found for the problem.

I saw MD's all over the country but every one of them only dealt with me while I was awake. Not even the neuro docs ever checked my sleep and I saw big time MD's.

Sleep medicine was not considered during those years.

It was the head pulmonologist at University Hospital who discovered I had a damaged brain stem and central apnea all that time.

I had no chance to try any other surgery, it was trach now or die. Cpap was tried for a few days but it would take too long to get help from it. I could not tolerate the cpap at all.

We were told to go home and call my attorney to put things in order cause I would be dead in three weeks.

They did the trach and a pacemaker and I went home two weeks later.

The trach was a big help for the centrals and later the timed bipap was added. My slow recovery fooled everyone.

That was fifteen years ago and now I have no experience with apnea as long as I have my equipment operating.

I do have heart, lung and kidney failure and serious arthritis and am 100% in an electric wheelchair.

Still going strong within my physical limits which have been extremely reduced in the past three years.

I am not happy with my medical situation and wish it could be otherwise but I am content and my life is full.

As a last resort I would advise a trach but only when non invasive treatment is not an option.

It saved my life and I have had no complications with the trach. My trach limitations are few, no swimming (I was raised on the Jersey shore and I miss that) and I can't bend my head backward enough to fully drain a bottle of soda. No big deal.

I spend the same amount of time with trach care as I do brushing my teeth and I am the only person who changes my tube.

That's it, I advocate a trach but only when it is necessary, not as an option for other treatment.

Flip

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