Fighting Cystic Fibrosis With Faith!
-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.
-Faith does breathing treatments for many reasons. Most recently she has had labored breathing and a cough, which causes her body to work hard to breathe. This is caused by inflammation in the lungs. Inflammation is brought on by either an infection or asthma. Recently, Faith has been diagnosed with both. Her current schedule kind of goes like this. In the morning we do her Xopenex and Atrovent (to open the airways and break up mucus) and her vest for 20 minutes. Then we do her Pulmicort (an inhaled steroid). Following these we do her Tobi (an antibiotic to help her fight the Pseudomonas). Then after her afternoon nap we do Xopenex again and Atrovent again and Pulmicort if needed. Her night time routine is just like her morning one except we also do her Pulmozyme to help thin out the mucous in her lungs. In total we do about2-3 hours of treatments a day.
-Faith uses the Vest to loosen up mucus in her lungs. She does this twice a day for 20 minutes, although, she would do it up to 3 or 4 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 Atrovent treatments while also doing her vest and Pulmicort (for her breathing). Then she will take her Prilosec (for reflux and to aid in absorption). Then she will take 6 Creon enzymes before she eats (so she absorbs the protein and fats in her breakfast). She then has to have her Vitamax (vitamin supplement). Now she can eat. Then after breakfast she will do her TOBI treatment (an antibiotic to fight her lung infection). She does 28 days on then 28 days off of her TOBI. If she has any snacks during the day she will take 3 of her Creon enzymes. Then at lunch time she will get her 6 Creon enzymes again. Then before dinner she will have Prilosec again and her 6 Creon enzymes. Then about an hour after she eats we will start with her breathing treatments again and do the last Xopenex and Atrovent for the day, her vest again, and her Pulmicort. We also do Pulmozyme to help thin out the mucous in her lungs.Then she will finish off with her TOBI treatment (if she is on it). Just before bed she takes her Singulair (for allergies) and her Nasonex (for allergies) and WE ARE DONE, just in time for bed! Her morning and night time routines usually take about an hour to two each 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), bronchiodialators (Xopenex and Atrovent), 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.
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. Faith also has Celiac Disease. This is an auto immune disease that causes damage to her intestines should she eat a protein called gluten. Gluten is found in wheat, oats, barley, malt, and rye. Should she eat gluten she would get very sick.
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!
