I’m taking a break from my life story to share that I have an important doctor appointment today with my CF team. It’s been a while, and we have a lot to cover. My sister is taking me, partly because it’s sometimes hard for me to drive, and partly so that she can get up to date on my CF care.
Living with CF is becoming a family effort, out of necessity. For nearly twenty years, Ken has been my sole caregiver. He knows me better than I know myself. He can tell when I’m starting to get sick, whether I’m doing better or worse, and tracks my vital signs when I am too sick to do so myself. However, it’s a job that has become more complex and more difficult, and we have recruited my sister C to be our “number 2”.
C will be escorting me to Yale New Haven Hospital and learning as much about my care and treatments as she can from the 2-3 hour appointment. I first have my Pulmonary Function Tests, which measure my current lung function. I then usually meet with the Respiratory Therapy, Physical Therapy, Social Work and Nutrition Departments, and finally, one of the four CF specialists. Sometimes I have to get blood tests or X-rays, so it can be a lengthy visit.
One major thing that I need to discuss with my team are my fluctuating oxygen levels. Outside of severe infections, my Oxygen Saturation, which I can measure using a portable Pulse Oximeter, has not been stable. In the past 18 months, I’ve had problems keeping my Oxygen where it needs to be, especially at night and when I’m active.
I will have an update for you tomorrow, once I know the results of my appointment. After that, we’ll return to my previously scheduled CF Awareness posts.