Sunday, May 16, 2010

A Day in the Life of Cystic Fibrosis

May is Cystic Fibrosis awareness month. In the spirit of spreading the word I'd like to share what my day looks like in terms of Cystic Fibrosis maintenance. Keep in mind this is my "healthy" schedule. It is far more rigorous when I have an active lung and/or sinus infection.

8AM First pills!
800mg Motrin (to control inflammation)
180mg Allegra (to control grass allergies)
40mg Nexium (to control GERD -Gastroesophageal reflux disease)
8:05AM Prepare/mix and warm sinus rinse
8oz distilled water (to decrease risk of exposure to harmful bacteria)
1 packet NeilMed salt
1 vial Pulmicort Respules (steroid to reduce nasal polyps)
8:10AM flush each nostril with 4oz of prepared warmed sinus rinse.
8:15AM Nasal sprays
Patanase 2 sprays each nostril (reduce nasal inflammation)
Nasonex 1 spray each nostril (steroid to reduce nasal polyps)
8:20AM First Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
8:20AM Simultaneous first nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
5mL 3% Hypertonic Saline (expectorant)
8:40AM Reconstitute inhaled antibiotic
500mg Meropenum/3mL sterile water (reduce pseudomonas aeruginosa in the lungs)
Inhale mixed Meropenum solution
This antibiotic is alternated 28 days on and 28 days off. During the off month I inhale Cayston (Aztreonam Lysine) They are rotated to reduce the chance my bacteria in the lungs will build a resistance.
8:50AM Vest is done, continue inhaling Meropenum
8:55AM Meropenum complete
8:55AM Rinse and wash all nebulizer pieces and parts, let air dry
9AM 2 puffs Advair HFA 115/21 (long acting bronchodilator combined with steroid)
9AM Breakfast
3 Ultrase MT20 enzyme pills (to digest food)
600mg Calcium
1000mg Vitamin C
1 ABDEK (prescription vitamin high in fat soluble vitamins)
3 PB8 (blend of 8 probiotics to reduce yeast growth)
11AM Small snack
2 Ultrase MT20 enzyme pills (to digest food)
mix 1-2TBS Miralax powder with 6oz Orange Juice (Laxative)
12PM Lunch
3 Ultrase MT20 enzyme pills (to digest food)
1:30PM Second Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
1:30PM Simultaneous second nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
5mL 3% Hypertonic Saline (expectorant)
2PM Vest and nebs are done.
2PM Rinse and wash all nebulizer pieces and parts, let air dry
2:30PM Snack time!
2 Ultrase MT20 enzyme pills (to digest food)
800mg Motrin (to control inflammation)
5:30PM Dinner
3 Ultrase MT20 enzyme pills (to digest food)
600mg Calcium
1000mg Vitamin C
1 ABDEK (prescription vitamin high in fat soluble vitamins)
3 PB8 (blend of 8 probiotics to reduce yeast growth)
6:45PM Prepare/mix and warm sinus rinse
8oz distilled water (to decrease risk of exposure to harmful bacteria)
1 packet NeilMed salt
1 vial Pulmicort Respules (steroid to reduce nasal polyps)
6:50PM flush each nostril with 4oz of prepared warmed sinus rinse.
6:55PM Nasal sprays
Patanase 2 sprays each nostril (reduce nasal inflammation)
Nasonex 1 spray each nostril (steroid to reduce nasal polyps)
7PM Third and final Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
7PM Simultaneous third nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
Pulmozyme 2.5mL (thins mucus)
7:20PMReconstitute inhaled antibiotic
500mg Meropenum/3mL sterile water (reduce pseudomonas aeruginosa in the lungs)
Inhale mixed Meropenum solution
7:30PM Vest is complete. Continue inhaling Meropenum
7:40PM Meropenum complete
7:40PM Rinse and wash all nebulizer pieces and parts, let air dry
7:45PM 2 puffs Advair HFA 115/21 (long acting bronchodilator combined with steroid)
9PM Last pills!
500mg Zitromax (Mon, Weds and Fri only)
Lo Ovral Birth control pills (an unintended pregnancy could jeopardize my lungs)
50mg trazodone (sleeping pill)
10mg Singulair (to treat asthma component to Cystic Fibrosis)
800mg Motrin (to control inflammation)
40mg Nexium (to control GERD -Gastroesophageal reflux disease)
9:05PM Fire up the oxygen concentrator. My lungs don't exchange gases well anymore at night when I breathe shallow in my sleep. My oxygen saturation levels drop into the 70's so I have to sleep with 3 Liters of continuous flow oxygen through a nasal cannula to keep my oxygen sats in the 90's.






4 comments:

Carrie said...

Wow!! When you put it that way... our lives are really busy. No wonder I fall into bed at night and morning comes too soon. :-)

The Mantha Family said...

That is an amazing list Tara. You kick ass!

Chipmunk Chatter said...

I am amazed at how you do it all.

Tamiko said...

Wow. You continually astound me with all you do with such a great attitude! So many people (myself included) can learn from you! Thanks for sharing.