Fighting Cystic Fibrosis With Faith!
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Frequently Asked Questions
Frequently Asked Questions
 
Why does Faith take enzymes?

-Faith takes enzymes before every meal because, due to mucus blockage, her pancreas does not work. Your pancreas helps you absorb vitamins, protein, and fat. Without enzymes, Faith will not absorb these, which leads to an upset stomach, diarrhea, weight loss,  and vitamin deficiency among other things. 

Why does Faith do breathing treatments and how many does she have to do?

-Faith does breathing treatments for many reasons.  Mostly it is to keep her lungs clear and healthy. Her current schedule kind of goes like this.  In the morning she does her Xopenex and Hypertonic Salene 3%(to open the airways and thin the mucus) and her vest for 25 minutes.  Then she does her Advair (an inhaled steroid).   Her night time routine is just like her morning one. In total she spends about 1  hour doing treatments everyday.
 
 
Why does Faith do the "VEST" and how often?

-Faith uses the Vest to loosen up mucus in her lungs. She does this twice a day for 25 minutes, although, she would do it up to 3 times a day if she were to get sick.

 



How many medicines does Faith take during a normal day and why?

 

-Faith takes a variety of meds each day for many different reasons.  Here is an idea of what our normal routine is.  In the morning she does her Xopenex  and Hypertonic Salene treatments while also doing her vest and Advair  (for her breathing).  Then she will take her Previcid (to aid in absorption).  Then she will take 4 Zenpep enzymes before she eats (so she absorbs the protein and fats in her breakfast).  After she eats she then has to have her Vitamax (vitamin supplement) Vit K, D, zinc, calcium, and culterelle.  If she has any snacks during the day she will take 2 of her Zenpep enzymes.  Then at lunch time she will get her 4 enzymes again.  Then before dinner she will have her 4 enzymes.  Then at about 7:00 she will start with her breathing treatments again and do the last Xopenex and Hypertonic Salene, her vest again, and her Advair. Just before bed she takes her Singulair (for allergies) and WE ARE DONE, just in time for bed!   Her morning and night time routines usually take about an hour depending on what meds we are currently on. 

 What Is Pseudomonas and why is it so harmful to Faith?

 

-The most common bacterium to infect the CF lung is Pseudomonas aeruginosa, a gram-negative microorganism with a propensity to live in warm, wet environments. The lungs of most children with CF become colonized (inhabited long-term) by P. aeruginosa before their 10th birthday. The body's response to P. aeruginosa includes inflammation, which causes repeated exacerbations or episodes of intense breathing problems. Although antibiotics can decrease the frequency and duration of these attacks, the bacterium establishes a permanent residence and can never be completely eliminated from the lungs.

 

The treatments for P. aeruginosa lung disease typically involve antibiotics (TOBI or Cayston), bronchiodialators (Xopenex and Advair), and chest physiotherapy (the Vest) to help fight infection and clear the lung passages. While a variety of antibiotics have been used to treat this bacterium in people with CF, improvements in drug delivery systems (such as inhalation) and more effective antibiotics could potentially improve lung function further. She also will take Cipro and Septra to help fight P.A as well.

 

Why does she need to stay away from anyone who is sick or who has been sick recently?

 

-People with CF get sick extremely easy and what is a cold to a healthy person can be pneumonia to someone with CF. Colds can be very hard to get rid of for CF patients.

 

Why can't Faith be around other CF kids/patients?

-CF patients can transmit a certain number of dangerous bacteria's to each other. For example, pseudomonas is a common bacteria, but can be very harmful to CF patients (and it can be transmitted from patient to patient by touch).

Will Faith "grow out of" CF?

-No. CF is a genetic disease. That would be like growing out of her blue eyes ;-). That would be wonderful, but no.   But she can be healed, and we are believing for that. 

Why does Faith have a special Diet?


-Faith has two diseases which require a special diet.  CF requires that she have extra fat, protein and calories because she does not absorb these well due to her insufficient pancreas. If she didn't eat this way, she would lose weight. She must have extra salt because she loses a lot salt in her sweat, which leads to dehydration. 

Does She have a mild form of CF?

- Most people don't know how mild or severe their form of CF will be.  Faith has two mutations, one from each parent. They are both the Delta F508 mutations and this is the most common mutation. CF is known as a progressive disease. This is why the precautions we take for her are so important.


*If you have a question, but the answer is not given please feel free to ask me.  You can email me at Anja@fightingcfwithFaith.com.  If I can't answer it, I'll find someone who can!
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