Cystic Fibrosis is a progressive and fatal genetic disease that does not have a cure. I wake up everyday knowing that I could very well outlive my son. Think about that for a minute.
Receiving that diagnosis, and hearing those words “progressive and fatal”, thats tough. I was scared. I am scared! Terrified actually. But being sad and scared is not a productive place for me to stay.
Once we adjusted to our new normal, a life of medications and doctors appointments and hospital stays, wondering and worrying and praying, I set out on a mission to save my son. I listened to what the doctors were telling us, taking notes and asking questions. I searched online and read medical journals and news articles. I tracked everything, trying to learn anything new, something the researchers might have missed, and stumbled upon other parents and patients online who were doing the same thing. I joined advisory groups and quality improvement committees that I not only learned from but started to contribute to. I was becoming empowered by my peers, and I began to see how patients, working together with clinicians and researchers, true participatory medicine, could improve both health and care.
My son has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital for the past two years. The medical journals suggest that he will lose roughly 4% of his lung function every year. What I need is access to real-time, trusted, reliable information on everything from novel approaches to eradicate that bacteria, to reasons why having a certain pet could be detrimental to his health. I want to know what other parents know and have tried, and I want a doctor to weigh in on why those options may or may not be good for me. I want to hear about what tracking methods people use and how they connect with their doctor between visits, but even more, how its improving their care. I want other patients to feel empowered to ask about alternatives and suggest trying something new to their doctor, no matter how novel it may be. And then I want to work with the research team to develop the research agenda.
I’m here because I am trying to save my son’s life! Access to information like this, to people, to life saving treatment options, should not be left to the chance of a desperate parent or patient stumbling upon it on Facebook. We have a moral obligation to work together and organize this information!
To the doctors and researchers here:
I want you to appreciate that patients are more than just patients and that our lives are more than just our disease. I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor and a friend. I have experience as a marketer, a researcher, a photographer. I have sold Tupperware, makeup, knives, linens and Girl Scout cookies. I have served coffee and cosmos and jury duty. I am a volunteer, a blogger and an advocate. I work on our clinical care team as a Family Partner so that the perspective of patients and families who experience care in a way that you may never fully understand, is present in all clinical discussions. What patients and their caregivers bring to the table should be appreciated. We want to work with you. I implore you, let us help!
To the patients and caregivers:
I’m here because I am trying to save my son’s life! Access to information like this, to people, to life saving treatment options, should not be left to the chance of a desperate parent or patient stumbling upon it on Facebook. We have a moral obligation to work together and organize this information!
To the doctors and researchers here:
I want you to appreciate that patients are more than just patients and that our lives are more than just our disease. I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor and a friend. I have experience as a marketer, a researcher, a photographer. I have sold Tupperware, makeup, knives, linens and Girl Scout cookies. I have served coffee and cosmos and jury duty. I am a volunteer, a blogger and an advocate. I work on our clinical care team as a Family Partner so that the perspective of patients and families who experience care in a way that you may never fully understand, is present in all clinical discussions. What patients and their caregivers bring to the table should be appreciated. We want to work with you. I implore you, let us help!
To the patients and caregivers:
Be brave. This isn’t an easy life. It is tough, there is no doubt about it. But you are very capable and the rewards are great. There are many people like you. You can find us online, in support groups and wandering the halls of the hospital. You have so much knowledge to share, as you are an expert on you. Share that rich knowledge with your doctors and other care providers and with everyone you meet. Let your voice be heard, and lead the change that you desperately need.
This is Drew. He may have cystic fibrosis, but cystic fibrosis does not have him.
This is Drew. He may have cystic fibrosis, but cystic fibrosis does not have him.
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