Im 64 years old with complicated severe asthma since birth and was diagnosed with bronchiolitis obliterans in 2017.
Im a Respiratory Therapist by profession and know a lot about my disease.Ive been intubated 45 times, the last time was March 2019 at UCSF Parnassus. In Jan 2019 I was diagnosed with and had dilation surgery for posterior glottic stenosis, probably caused by so many intubations. I had a second dilation done on Feb 20th 2019 at UCSF Mission Bay.
I do not have traditional COPD, am NOT a CO2 retainer and I rarely desat unless I have a secondary infection. While I sometimes develop dyspnea associated anxiety, I do not have a generalized anxiety disorder and tend to be unusually stoic during severe exacerbations.
I have major issues with sedation, ICU delirium and a history of awareness during anesthesia and intubation. If I need to be intubated, please refer to special instructions in my chart and consult with the ENT people regarding my glottic stenosis, as I require a smaller tube.
As far as corticosteroids, other than an initial loading dose , please keep my daily doses to a minimum, as I tend to develop psychosis at higher doses.
I have a Venous Access Port in my left chest because of difficult access.
I have an advance health care directive on file.
My UCSF Pulmonologist is John Fahy, and my UCSF Otolaryngologist is Matthew Russell.
Things that help in the ER:
Cont nebs 10-15mg/hr
IV Fentanyl .75 mcg PRN or Dilaudid Q4-6 PRN for dyspnea
Bipap if PCO2 is rising or nebs not working.
Thank you for taking care of me.