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Re:Emergency trache 4 weeks ago- (Long response)

Posted by Alamo Joe on July 21, 2001 at 11:15:34:

In Reply to: EMERGNCY TRACH 4 WEEKS AGO posted by LISA on July 21, 2001 at 00:30:13:

Lisa:

I probably am not the best to write this, but here it is.

Various regulars have had some problems.

Perry has allergies and other problems in addition to apnea. He had difficulty in finding a machine that would work for him. He studied most, if not all the machines on the market (And some not yet on the market as I understand it) and determined the set-up which be best for him. He learned how each auto-pap worked. That included understanding the sensing mechanism. He is working on a paper (With encouragement from some professionals) to present his findings. He had to perform his research in order to obtain appropriate treatment for himself.

Reno Tom had trouble with air leaking from his mouth. He finally devised a chip strap to stop the leaks. Whenever someone posts that they can’t stop leaks, that post is responded to with the message “Find Reno Tom’s e-mail address and he will send you information on how to make one”.

Scott has a trache. It did not work properly. Scott studied the subject and his doctor, knowing that Scott had studied the subject automatically authorized any of Scott’s requests. Scott even designed his own trache and the doctor authorized the expense of having it made.

My ‘thing’ is writing letters to medical journals about disorders which, in my opinion, are caused by apnea. One reason for doing it is to generate an appreciation for how much apnea and other sleeping disorders affect lives, and most of the time without the realization that our lives are being affected. In this way I hope to encourage research on apnea (And other sleep disorders) with the end result being effective treatment, or at least the recognition of professionals that they need to learn more to properly take care of their patients.

Your doctor is not with you 24/7, but you are. You can do things for yourself, but you must be willing to try. I am 6 foot one inch tall and weigh about 170 pounds. I have no driving priority in understanding why some say apnea causes weight gain. I understand, superficially, why being overweight causes apnea, but I have been collecting citations and some abstracts which may be useful.

Scheen AJ; Van Cauter E. The roles of time of day and sleep quality in modulating glucose regulation: clinical implications. Horm Res 1998;49(3-4):191-201

Van Cauter E; Spiegel K. Sleep as a mediator of the relationship between socioeconomic status and health: a hypothesis. Ann N Y Acad Sci 1999;896:254-61

I am giving you an assignment. Find out what these papers have to say. Determine if by even the remotest chance that they may help you. Take that remotest chance and do further research. Somewhere you will find something to help you, but I can do nothing for you with my keyboard. I have spent quite a bit of money copying medical papers. I have over 100 abstracts on my disk. Not all of them are useful, but that is the exercise. Find out which ones are useful.

Sometimes you will have too much information. Ignore the useless stuff, but don’t throw it away, because you will remember a few words from that paper when looking at another and realize that the earlier paper actually is useful. (Carolyn has sent me citations, abstract and papers for which I saw no immediate use, but they were useful. In fact, at least two and possibly three are cited in the accepted letter on reflux. I am fortunate that she sent them to me.) At times you will need to ask yourself, “Precisely what piece of information do I need? Do not assume that papers which you find are definitive. In one way doctors are like geologists, they enjoy pointing out that the other professional is wrong. (It helps their ego.) You may need to collect information and performing reasoning to determine what the proper answer is, but you are going be instrumental in solving your problem, just as Scott, Reno Tom and Perry were.

ca Alamo Joe

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