Semiserious Chefs

Nathan takes about 25 pill everyday for nutritional care. He does a nebulized breathing treatment and chest physiotherapy using a vibrating vest every morning and every night. This takes up about two hours of the day. There are multi hour sub-specialty clinic appointments every 3 months that always involve a thorough check-over and a very unpleasant throat culture. Once a year, or more as-needed, x-rays are taken, and blood is drawn for a full panel. If a patient has an exasperation they will go in for a 'tune-up' with a hospital stay anywhere from 10 to 30 days. We have been very fortunate to have yet to need a tune-up, but CF doesn't take vacations. It doesn't have birthdays or Christmas' off. It doesn't care if you are getting on a plane or staying in an Airbnb. It certainly doesn't care if you are living and traveling in an RV. It is unrelenting and you have to take it seriously. CF will never get better. It will only get worse.

But there is hope. Before the 1960s “Salty Babies” didn't make it to kindergarten. When Nathan was born the median life expectancy had grown to around 37 years. In the 10 years that has followed that has increased by nearly 10 more years. Not only has early screening for the disease, stronger antibiotics, specialized medications, and more Whole Person Care initiatives made major differences, but there are drugs coming down the pipeline that are being created to correct the genetic miscommunications that are happening at the cellular level. We take CF treatments seriously and don't miss those quarterly appointments, but we also refuse to let it stop us from living our dreams. We decided that now was the time and that we would do whatever we had to to make life on the road happen.