Eyes on Elena: her CF Update: May 2016

Saturday, May 21, 2016

Here we go, Here we go, Here we go now!

Here we go...

Waking up early so treatments can be done on time to get us out the door to set up our team tent.

Here we go...

Onward with smiles and silliness as we tackle the rough patches in life with CF and just life in general

Here we go...

Spreading love and sharing friendship even during the darkest of times

Here we go...

Towards more deeply loving and wonderful friendships

Here we go...

With support and love by our side near and far

Here we go...

Working and fighting with many other people in our growing CF family.

Here we go...

with hope and love in our hearts

Here we go...

Towards a cure

Here we go...

Towards more tomorrow's

Here we go now. Check it out.

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

Saturday, May 21, 2016

Here we go, Here we go, Here we go now!

Want to see what my family is up to?

My Heroes!

Thank you for showing your concern about me!