As you can see, CF is time consuming, but it is becoming just part of our day. We were very lucky to have been diagnosed through newborn screening. Hopefully, by doing this, we can protect his lungs until a cure is found. They are so close to finding it. There are several drugs in the pipeline, but two in particular, that will likely cure this monster. They are in stage two and stage three clinical trials. One hopes for FDA approval in early 2011. This will likely be the first genetic disease ever cured. Can you imagine what this will mean for all other genetic diseases?
CF is a progressive disease, and we know things will get worse. Hopefully, a cure will come before organ damage happens.
One thing we have learned is that we will go to great lengths to protect Philip. We were told by another CF family that there will be family events we will miss because someone there has a cold, and family members that we will lose because they refuse to understand the disease or take it seriously, because "he looks so healthy". We have found that to be true. As a CF parent, YOU have to look out for your child and be their advocate. We notice the little things now, like the person in the room that is sneezing, and we try to get him out of there. We notice people's homes that smell of smoke or mold, and we no longer visit them. The sponge that I used to have on the kitchen sink, no longer sits there, for fear pseudamonas will grow on it. The vaporizer that we ususally have for babies is no longer in use. It could harbor bacteria and introduce it right into his lungs. We try to keep him healthy so he can avoid antibiotics. We know a day will come when the doctor prescribes him an antibiotic that he has been on many times before, and now no longer will kill these bugs. It is truly a life altering disease.
However, through all of this, Philip is such a happy baby and is an absolute joy. We are so thankful to have him!
Ever Wonder What the Cost of CF Is??? The costs listed below are prices before insurance, however many of these costs are not covered, and none are covered in full. Many people with CF meet lifetime caps on their insurance, resulting in zero coverage on medications/treatments.
The Vest CPT machine: $16,800 Nebulizer: $849.00 Tobi (inhaled antibiotic to fight pseudomonas): $4890.00 (has only used once) Bactrim (oral antibiotic to fight staph): $26.09 Ultrase (enzymes required before every meal/snack): $475.09/mo Culturelle (probiotics to keep bad bacteria from taking over his intestines): $30/mo Florastor (probiotics for intestines): $30/mo Miralax (thins mucus in his intestines to keep him from forming a blockage):$42.99/mo Zantac (combats painful reflux): $114.59/mo Albuterol (open airways before CPT): $49.99/mo Pulmozyme (breaks up mucus)-$1900.00/mo Hypertonic Saline (wet airways, assist in coughing)- $99.00/mo Turmeric (anti-inflammatory)- $13.00/mo Aloe Vera Juice (heals intestines, aids in digestion)- $30.00/mo ElectroFlo 5000 Hand Percussor- $3000.00 Acapella airway clearance- $70.00 Aquadeks (water soluble CF vitamins)- $50.00/mo Cod Liver - $22.00/mo Vitamin D- $15.00/mo Boost high calorie- $100.00/mo Flonase- helps keep sinus infections away- $25.00/mo CF clinic/ENT visits- $50/visit
These are all medications that Philip currently takes every day of his life. He has never been hospitalized, but when he is, it will be costly. CF patients are typically in the hospital for several weeks. We typically have several doctor's appointments every month. When he gets a cold, he is typically on at least 2 more medications. *Update- his hospitalization for norovirus cost over $20,000!