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Adult Cystic Fibrosis Care
May 15, 2018 at 11:39 AM

As I sit here in the hospital, waiting for someone to get me some pain medications, I am reminded of the good days, when CF patients were treated like priorities. My IV insesently beeps on and on for hours with no one silencing it. It seem like the older I get, the less and less people worry about my quality of care.

If any of you are firmiliar with Boomer, he talks about the change of care with adult and children with cystic fibrosis. As we age, it seems like doctors are assuming we will be sick, and they prepare us for transplants as opposed to getting healthy and maintaining our own lungs as long as possible. To top it off, I've been in the hospital for 4 days now and I have only seen my CF doctor once. I'm in constant pain, i have a severe cough (when i cough, I cough so hard i turn blue and my hands go numb) and have had some WICKED high blood sugars. I'm over being everyone's second priority. I'm 3 hours away from home, reciving worse care than I
would be reciving if I was doing it myself at home!

Care for adult Cystic Fibrosis Patients NEEDS to change.


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