Sunday, August 24, 2008
My Version of Normal
A Day in the Life of a CF Patient
Aside from all the medications and airway clearance treatments, a day in my life as a cystic fibrosis patient really isn't that different from anyone else's day.
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The first thing I do every morning upon waking is cough. I cough because the thick, sticky mucus so characteristic of cystic fibrosis, has lodged itself in my airways during the night. Some mornings it only takes five minutes to clear my lungs of sputum. Cystic fibrosis patients like me have affectionately dubbed these secretions "lung oysters."
My first round of coughing complete, I move on to a more dramatic approach to airway clearance. I stumble downstairs to the refrigerator where I keep one of my most effective medications. Pulmozyme, or DNase, is a mucolytic developed by Genetech. When inhaled as a mist via nebulizer, it works in my lungs to cut apart the bacteria that thrive there. Pulmozyme is just one of the inhaled medications I need to open up my airways to their fullest. A bronchodilator in the form of a metered dose inhaler (MDI) goes a long way to help with that. Later in the day, I may need that bronchodilator again if I feel my chest becoming tight.
The highlight of my morning routine is my high-frequency chest wall oscillation (HFCWO) vest. It looks like a life vest. On the front of the vest are two hoses that attach to an air compressor. As the vest fills with air and begins to vibrate, the controls on the compressor allow me to set the frequency, pressure and length of time for the vibration therapy. I wear the vest for a minimum of 20 minutes on days when I feel well and up to an hour when I'm struggling with chest congestion.
Read my complete published article: A Day in the Life of a CF Patient
Aside from all the medications and airway clearance treatments, a day in my life as a cystic fibrosis patient really isn't that different from anyone else's day.
View more ยป
The first thing I do every morning upon waking is cough. I cough because the thick, sticky mucus so characteristic of cystic fibrosis, has lodged itself in my airways during the night. Some mornings it only takes five minutes to clear my lungs of sputum. Cystic fibrosis patients like me have affectionately dubbed these secretions "lung oysters."
My first round of coughing complete, I move on to a more dramatic approach to airway clearance. I stumble downstairs to the refrigerator where I keep one of my most effective medications. Pulmozyme, or DNase, is a mucolytic developed by Genetech. When inhaled as a mist via nebulizer, it works in my lungs to cut apart the bacteria that thrive there. Pulmozyme is just one of the inhaled medications I need to open up my airways to their fullest. A bronchodilator in the form of a metered dose inhaler (MDI) goes a long way to help with that. Later in the day, I may need that bronchodilator again if I feel my chest becoming tight.
The highlight of my morning routine is my high-frequency chest wall oscillation (HFCWO) vest. It looks like a life vest. On the front of the vest are two hoses that attach to an air compressor. As the vest fills with air and begins to vibrate, the controls on the compressor allow me to set the frequency, pressure and length of time for the vibration therapy. I wear the vest for a minimum of 20 minutes on days when I feel well and up to an hour when I'm struggling with chest congestion.
Read my complete published article: A Day in the Life of a CF Patient
Comments:
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Hello, I'm a mother of a 2 yr old with CF. Thank you so much for sharing this. It's wonderful to read about your day-what a great schedule you've put in place!
Hi,
I came across your blog while I was on google trying to learn what CF is and what will happen.I am blessed with friends who want to know about CF and what they can do for me.My life changed in one phone call from a doctor .I have already gone six years with U/C and ended up surgery and three years later CF...I know I am strong and I can do this it just so caught me off guard.Thank you
for letting me know your hear if I need to vent...Lisa R
I came across your blog while I was on google trying to learn what CF is and what will happen.I am blessed with friends who want to know about CF and what they can do for me.My life changed in one phone call from a doctor .I have already gone six years with U/C and ended up surgery and three years later CF...I know I am strong and I can do this it just so caught me off guard.Thank you
for letting me know your hear if I need to vent...Lisa R
Thanks for your great information, the contents are quiet interesting. It's so important to realize that every time you get upset, it drains your emotional energy.
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