Monday, May 11, 2009

May is Cystic Fibrosis Awareness Month!

This blog entry is a cut and paste from my tweets today. It details every single thing I do to fight CF every single day. Keep in mind, this list gets much longer and more arduous when I'm sick. I get frequent lung infections that involve round the clock IV antibiotics and frequent hospitalizations.

But today I'm healthy.

If you're reading this blog then you probably already know this but in between spending hours on CF every single day I am also a very busy mom to 4.5 year old twins. For CF I take almost 30 pills a day and spend about 4 hours doing breathing treatments. As a mom today, I shuttled the kids to/from preschool, wiped sticky hands and faces, squished spiders, removed splinters, read stories, did dishes, folded laundry... you get the idea.

Please consider donating to the Tara K Telford Fund for Cystic Fibrosis Research at UC Davis. Let's make CF stand for Cure Found!

Without further ado... here are my tweets from today!




May is Cystic Fibrosis Awareness month. Today I'll be tweeting my CF routine. I do all these things EVERY. SINGLE. DAY. Stay tuned!

6:30AM Rise and shine! Prepare sinus rinse with distilled water and NeilMed salt packet. Heat mixture above room temperature for comfort.

6:31AM First morning pills! 800mg Ibuprofin for lung inflammation, 40mg Nexium for reflux, 180mg Fexofenadine for nasal allergies.

6:34AM Assemble clean dry nebulizer cups for first respiratory treatment of the day. Gather ampules (some refrigerated) for this treatment

6:36AM Sinus rinse now warm! Lean far over sink. Squirt 4oz salt mixture through each nostril. Blow and dry nose. Clean sinus rinse bottle.

6:37AM Roll up o2 tubing that I used during the night. W/out supplemental oxygen my o2 levels dip dangerously low inducing hypoxemia.

6:38 AM Patanase nasal spray, 2 sprays each nostril for allergies. This one has been a godsend to me, opening my nostrils to I can BREATHE!

6:39AM 1 spray Nasonex in each nostril. This steroid reduces the chance nasal polyps form, delaying sinus surgery, common for Cystics.

6:45AM Ready to begin 30 minutes of chest physiotherapy. I use High Frequency Chest Wall Oscillation device. http://www.electromed.com/

6:46AM Xopenex HFA 45mcg. 4 puffs, spaced 1 minute apart. It's a bronchodilator. Opens my lungs releasing tightness and shortness of breath.

6:50 AM Fire up the nebulizer compressor that will deliver the power and air needed to nebulize my aerosolized meds during my vest treatment

6:51 AM While nebbing and vesting, reconstitute a vial of dry Merropenum with 3mL sterile water for inhalation. Shake it up and let it sit.

7:05AM draw out Merropenum, dump into nebulizer and inhale for 20 minutes. inhaled antibiotics keep some of the lung bacteria under control.

7:15AM Chest physiotherapy (CPT) complete. Unstrap the now sweaty vest. Breathe normally. :)

7:25AM Merropenum complete! Unhook nebulizer compressor hose. set neb cup aside. Turn off Pari Pro Neb Ultra II compressor.

7:26AM Fire up the Pari Sinustar nebulizer compressor. It has a higher PSI output to make particles smaller for the sinus neb treatments,

7:26AM nasally inhale 0.8mg betamethasone to control nasal inflammation associated w/ current sinus infection.

7:37AM nasally inhale 500mg Fortaz, antibiotic to hopefully get rid of current sinus infection.

7:50AM 1 hour 20 minutes later... morning routine is DONE! Turn off sinustar compressor. Rinse and clean neb cups. Let air dry for next use.

8:00AM With breakfast I take pancreatic enzymes to help digest my food since my pancreas is blocked by thick sticky mucus.

8:00AM Time for my morning dose of 600mg Calcium. I have osteopenia (weak/thin bones) from malabsorption of calcium over the years.

8:00AM Taking 1000mg capsule of vitamin C to boost my immune system. My body constantly fights infection, reducing ability to fight viruses

8:00AM Taking my prescription vit w/ high amounts fat soluble vitamins, ABDEK. I have a hard time absorbing these vits hence the large dose

8:00AM Extra strength blend w/ 8 probiotics OTC. Expensive but worth it to keep yeast at bay, a risk from all antibiotics I'm subjected to.

9:00AM Turn on o2 concentrator so I can suck o2 while working out for 30min. Keeping my o2 sats above 92 during exercise protects my heart.

9:00AM-9:30AM use my pulse oximeter to spot check my heart rate (not to exceed 165) and o2 sats (not to dip below 92) during exercise.

10:00AM I have diabetes related to CF. Blood sugar 2 hrs post breakfast: 74, a little low. Snack time! Goal: to consume 3000 calories a day.

10:10AM Add 17g Miralax powder to my OJ w/ mid-morn snack. CF intestines clog w/ mucus. Laxatives decrease incidence of bowel obstruction

12:00PM Lunchtime! More pills... some pancreatic enzymes to help digest the food I eat. I take "Ultrase MT20's."

12:45PM Time for round two! More breathing treatments. I'm gathering the ampules and nebulizer cups I'll be using this time around.

12:55PM 4 puffs 45mcg Xopenex w/ Pari Vortex spacing chamber, pause 1 min between puffs. This bronchodilater opens my airways.

1:05PM Begin inhaling Pulmozyme via nebulizer. This med thins my thick sticky mucus in my lungs. I take it once a day.

1:15PM Begin inhaling hypertonic saline 7% in the nebulizer. This hypertonic solution helps get that thick sticky crap out of my lungs.

1:25PM Even though the CPT treatment is complete now, I'm still finishing up the hypertonic saline nebulizer.

1:36PM Fire up the Sinustar neb compressor. Begin inhaling Fortaz through the nose with special sinus adaptor.

1:48PM Sinus nebulizer finished. Rinse and clean the nebulizer cups. Let them air dry for the next use.

2:15PM 2nd of 3 doses of 800mg Ibuprofin today. Motrin helps control the inflammation in my lungs.

2:20PM Twins are napping, & so am I. Napping is actually recommended by my doctor when I'm tired. Tired bodies cannot fight lung infection!

4:15PM Had a great nap. Now snack time = more enzyme pills. Don't want to waste those calories by not absorbing all they have to offer!

6:00PM More enzymes w/ dinner. I take enzymes every time I eat. 2-3 pills w/ meals & 1-2 pills w/ snacks. I never leave home w/out them!

6:15PM Take 600mg Calcium for bone strength, remember I have ostepenia & I'm only 33 years old! Most women worry about this after menopause.

6:15PM Take 2nd of 2 Rx vitamins for the day. Even with the high doses of fat soluble vits in it, one vitamin is not enough for the day.

6:15PM 1000 Vit C to boost the immune system. Staying healthy from viruses is key to not lose lung function.

6:15PM 2 more probiotic blend pills. It's important to restore the natural balance of bacteria and keep yeast at bay.


6:40PM Hunting and gathering and assembling appropriate clean nebulizer cups and liquid meds for the last breathing treatment of the day.

6:45PM Mixing salt packets and distilled water in the sinus rinse bottle. Warming mixture for more pleasant rinsing experience.

6:50PM Sinus rinse warmed and ready! Irrigate each nostril with about 4oz of saline. Prepares the sinus passages for the sinus nebs to come.

6:55PM My favorite nasal spray of the day, Patanase! 2 sprays each nostril. Unblocks nostrils from allergy inflammation.

7:00PM Nasonex steroid nasal spray to keep polyps at bay. Sinus surgery to rid polyps is very common for Cystics. I had surgery 2.5 yrs ago.

7:05PM Begin 3rd and final 30 minute airway clearance chest physiotherapy of the day with the SmartVest system.

7:05PM While vesting take bronchodilator. Inhale Xopenex and hold breath for 10 seconds, space each puff out 1 minute apart. Repeat 3 times.

7:10PM Begin hypertonic saline 7% solution inhalation via Pari Pro Neb Ultra II Nebulizer with the Pari LC Plus neb cup.

7:15PM Reconstitute sterile water and 500mg Merropenum to inhale in the nebulizer. This antibiotic helps keeps me infection free.

7:22PM Begin inhaling Merropenum. Merro is meant for IV use, so this formulation smells and tastes terrible. I've become used to it.

7:40PM Begin betamethasone inhalation via nebulizer for the sinuses. I have an infection at the moment & this steroid reduces inflammation.

7:55PM Begin Fortaz via sinus nebulizer. This is also an IV med that smells and tastes horrible. I've been on it so long, I'm used to it.

8:10PM Treatment #3 for the day is DONE! Rinse and wash neb cups for use tomorrow.

9:00PM Retrieve last round of meds before bedtime.

9:00PM 10mg Singulair. This pill is designed to reduce allergy and asthma symptoms. I take it once a day.

9:00PM 40mg Nexium. Ideally this pill is taken a half hour before dinner, but I usually forget so I end up taking it at bedtime.

9:00PM Birth control pill. No more babies here! Another pregnancy could seriously jeopardize my health.

9:00PM 50mg Trazodone. It helps me go to sleep on time so I can wake up and start all over tomorrow.

9:00PM Last dose of 800mg motrin for the day. Ideally it would be taken at 10:30PM, 8 hours after the previous dose, but I'm asleep by then.

5 comments:

Chipmunk Chatter said...

I'm exhausted just reading that! You amaze me Tara.

The Mantha Family said...

Wow, wow, wow .... you really are incredible Tara.

whatsherface said...

I hope you don't mind - I linked this entry to my doctor. This information would be a great little "leaflet" for med students (or even seasoned pros) to really understand what 100% compliance means. I hope he reads it!!

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