I am a 34-year-old cystic fibrosis patient who has, by and large, had good health in my time managing this disease. My only CF-related surgery has been for nasal polyps. I have routinely had lung function in the 80s and 90s (although once it dropped into the 30s). I have been capable of putting on double-digit pounds with focused effort and a few extra bucks.
Despite my verified, undisputed status as a CF patient and CF gene carrier, I have often felt out of place in the CF community. Others struggle with much greater obstacles than I do, such as lung transplants, gastrostomy-tubes (G-tubes), and severe weight gain issues.
With my wife, Ashlee's, recent in-vitro fertilization (IVF) pregnancy and the birth of our son, Lewis, I have found myself facing a risk to all CF patients, no matter the symptoms or severity: cross-infection between CF patients.
You see, Lewis has been an adorable magnet for friends and family, a group that includes other CF patients. This unique circumstance (I have never come across any data as to how many CF patients are related by blood or law to other CF patients) has put us in a pickle that has caused significant strain on our energies and emotions. With each holiday, birthday, or one-off occasion to celebrate as a family, wanting everyone under one roof has been pitted squarely against the risk that the CF patient family members might cross-infect, the consequences of which could be profound.
Who gets to go to Grandma's birthday party?
Do I get “ownership” of Lewis' upcoming birthday celebration over those who love Lewis but also have CF?
If it is only a 10 percent (or less) chance that a cross-infection may occur, can't we roll the dice and simply do our best to stay far enough apart (at least six feet) in the house or restaurant?
Since the germs can live on surfaces, is it reasonable that we could be vigilant enough to protect ourselves during the event?
These are just a few of the questions we have faced as a multi-person CF family, and in the past, we often chose the roll-the-dice option.
What I have found as I have aged, gained a wonderful wife, beautiful son, and a mortgage, is that my anxieties and level of fear in these situations has increased exponentially. My relatives have good intentions when inviting all family members to every holiday and party, but as the stakes of life have increased recently, my internal thoughts have gone from something like, “Relax, wash your hands frequently, and enjoy the party,” to “Why is no one concerned about protecting our health that we work so hard for?” and ”Where is the nearest exit?” to “Why is this happening?”
I realized that during my formative years, someone else was in charge of protecting my health, and when I left the nest to live the life of a carefree 20-something, I was too naïve to care. It has been a slow realization that beyond taking my enzymes and doing my treatments, I am now the only line of defense in guarding my pulmonary health against risky environmental situations. And there is a need to stand up to strangers, co-workers, and even family. It's easiest to turn down a cigarette offer from a fellow Vikings fan at U.S. Bank stadium. It's a level up to explain why you can't sit at the office happy hour one table downwind from the heavy chain smokers. It's hardest to explain to those you love that you won't attend major family events because they don't appreciate the risk for your lungs and the anxiety it creates inside you.
So I can't share the same war stories and commiseration level with my fellow CFers who have been through transplants and G-tubes. Regardless of where we fall on the health spectrum, the need to protect ourselves and manage our own risk-aversion levels is common ground. Those who love us will accept and respect the level of risk we are comfortable with as we navigate the world -- with a few extra considerations.
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