<< I haven't been able to acess my computer because of the heat wave in
>Connecticut. I am confined to my bedroom because it is the only air
>conditioned room in my house. The humidity sets me into severe
bronchospasm.
>
>I have a very difficult time with my secretions. They are so thick that my
>trach plugs up about evey two weeks. Because my trach has no inner cannula
>,it requires a trach change alomst every two weeks. ( because of my neck
size
>I am unable to have a trach with an inner cannula , believe me,my doctor,
>oxygen supply company and myself have searchedfor one). Unfortunatly trach
>changes are hard for me because of severe bronchospasm...so they need to
>sedate me with an annesthesia drug called propofol. This requires IV acess.
I
>have no veins left. The last two times they had to use my foot/ankle
>veins.(ouch) Last week the surgeon put in a uniporte, this will allow ready
>vein acess. I'm curious if any of you have one. And if you like it.
>
>My doctors keep referring to me as a "community nightmare" because my
husband
>and I handle my care. If I plug and can't breathe he puts the saline down
my
>trach and either he or I use the ambu bag. The insurance we have will not
pay
>for a home health aid. My doctors want me to go into a nursing home. (I'm
>only 39). I cry over this because they tell me I 'm being fair to family
and
>friends. They say I cause them too much stress and worry. How have you
dealt
>with this? Please respond soon as the heat and humidity will be returning
>soon. And I'll be confined to my bedroom again.
>
>thanks for listening. Sorry this note is so long.
>
>Sue Steele (Trach 96 (AT) aol.com)
>
>
>
Sue...
I have thought about your situation all day and it really bothers me that
people are highly suggesting that you may want to consider a nursing home.
Isn't there any alternative other than that? What state do you live in? I
live in IL and I qualify for what is called Home Services which is funded
my the Department of Rehabilitation Services. With Home Services I can
recieve attendent care rather than pay the high cost of home health
nursing or even the worse of sinerios, a nursing home. Does the insurance
company realize that a nursing home is much more costly than having a nurse
come in on a daily basis to assist you and your husband with daily trach
care?
You might want to contact your local Center for Independent Living Center.
They can assist people with disabilities with advocacy situations such as
the issue who are experiencing now, the right to live as independent as
possible or live in a nursing home. There is such a thing as quality of >>
I think Annette has to be right. If I were in your situation, I would get a
divorce and go on Medicare. You would be elgible for more health benefits.
Cindy RN