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)