Eyes on Elena: her CF Update: A Fun Twist on a Not So Fun Disease

Tuesday, October 1, 2013

A Fun Twist on a Not So Fun Disease

Our Friend and CF Cybro, Andy Lipman, has been a great voice of CF for many years. He now has produced a music video to send a message about life with Cystic Fibrosis.

"I Need a Nebulizer" features photos of people with CF, but especially two of our favorite CFers, David and Elena!

Enjoy!!

Here is the video “I Need a Nebulizer.” It’s a parody of Billy Joel’s “We Didn’t Start the Fire.”

http://www.youtube.com/watch?v=VyrqrjcPDq4

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MY STORY

Hi! I'm Elena. I was born with meconium ileus. Those are fancy words for an intestinal blockage. After several surgeries, complications, more blockages, stomas and ostomy bags, nearly loosing my life, long hospital stays, and MANY doctor visits...I was diagnosed with Cystic Fibrosis before I was even four months old. I'm very fortunate to have been born in 2004 because there is research that has given us major life altering meds for CF. Kids born with CF 20-30 years ago were lucky to live to be my age. With new meds and awesome healthcare the life expectancy for people with CF is in the mid 30's!

I have been hospitalized only three times since the complications following my birth. My health has been great! I stay busy with ballet, piano, homeschool, and time with my siblings and cousins. I have a love for life like no other!

Thanks for visiting my site.

My Current Medicines

*Pancreacarb MS-16 (5 with every meal and 4 with snacks) digestive enzymes to break down and absorb fats

*Nexium (one in the morning) helps promote better absorbtion of the enzymes

*Cyproheptadine (1/2 in the morning and 1/2 in the evening) an appetite stimulant and antihistamine

*ADEK chewable (1 in the morning) replacing fat soluble vitamins that I don't absorb without my enzyme replacement

*Zinc (1 in the morning) helps build resistance to viruses...and I have seen the difference!

*Gummy Vitamins (2 in the morning) needed extra vitamins due to the lack of abosorbtion from food

*Hypertonic Saline (1 vial in the morning) inhaled to slicken mucus so it is easier to expel the gunk from my lungs

*Pulmicort (1 vial in the morning) inhaled to break down and loosen mucus in lungs

*Xopenex (1 vial twice a day ) inhaled to help open up my bronchials to help get the two prior meds deeper into my lungs where bacteria can anchor itself

*Pulomozyme (one vial in the evening) targets one of the causes of the typical CF thick, sticky mucus - extracellular DNA - to help keep mucus thin and loose

*The Vest (twice a day with neb meds for 30 minutes, pausing every 10 minutes for huff cough routine) chest physio therapy that pounds the chest to help loosen the extra mucus in my lungs

*Florastore (once a day) helps to maintain a healthy digestive tract

*Myoplex Protein Bars (any time I can stomach them) this helps increase my calorie intake...they pack a lot of punch in these bars!

*Salt (sodium is supplemented all day in my food) sodium chloride does not channel well in the body of one with CF which causes dehydration and thicker mucus membranes. It must be replinished.

*Hugs (given and taken daily) my Mom, my Dad, and brother and sister give me loads of these

Eyes on Elena: her CF Update

Tuesday, October 1, 2013

A Fun Twist on a Not So Fun Disease

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