Life with a fatal lung disease like idiopathic pulmonary fibrosis (IPF) is very unpredictable. I thrive in routine, familiarity, and structure, so I have difficulty accepting that this disease can force instant changes. I’m still working on learning to let go of what I cannot control, like an exacerbation or respiratory. I won’t learn to do so overnight. I wish it wasn’t something I had to learn at all. However, I now realize that there are steps a patient can take to reduce some risks associated with having IPF.
I’ve written past columns about how the experiences of others living with IPF — especially those who have died from this disease — have affected me. Hearing their stories and connecting with people who understand what it is like to live with this lung disease has uplifted me in many ways. I am so grateful for others who share their IPF and lung transplantation stories. It is because of an experience a friend had recently had that I’ve initiated additional steps to reduce the risk of an IPF-related emergency, while ensuring that those around me know how to respond appropriately.
My friend was found unresponsive at home after a successful double lung transplant. Thankfully, the time between when my friend collapsed and when he was found was very brief, and the permanent implications were not significant. That said, I couldn’t imagine how scary this was for him and his family.
After hearing about his experience, I spent some time thinking about who would know how to respond in the event that an emergency occurs and I need immediate assistance. While I am still grappling with who to “educate” at home, it was easy to start with those in my workplace.
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When I first started my career a few years ago, shortly after my diagnosis of IPF, some key staff members were trained to assist me in the event of an emergency, including the human resources director, my manager, and our health and safety committee. It has been a few years since this training took place, and many people have moved on from the company. As a result, I worried there were no longer enough people who know how to help me in the event of an emergency.
With my friend’s experience in mind, I approached our human resources team about my concerns, and I was invited to take the lead on getting others educated. Due to the level of risk associated with my medical condition, our senior management team said they wanted at least 85 percent of the staff trained. I was thankful for this, although I wasn’t sure where to start. I began researching how to write an emergency protocol for various chronic illnesses, and derived my own template based on what I found.
Some online protocol templates were more in-depth than others, but many of them had commonalities. Among those was ensuring three things: pre-warning signs of an emergency were identified; how to help in the event of an emergency or crisis; and the steps to take or assistance to give if the emergency could be resolved without medical personnel. After outlining these things, I added a section about when to call versus when not to call an ambulance, along with which hospital I should be sent to should I need to be transported. Here are some of the pieces of my new emergency respiratory protocol:
1. How to identify respiratory distress (pre-warning signs and symptoms): In this section I talked about four specific things that I have experienced or anticipate would lead to a respiratory crisis: sudden or progressive dyspnea; discoloring of my lips, face, or hands; a cough that won’t subside; and feeling dizzy, weak, or shaky.
2. Administration of respiratory medication in the event of respiratory distress: Here, I talked about several steps that would help me, including having me sit or lie down to avoid falling and further injury. I also identified the order in which my puffers should be administered, along with the steps for administering my supplemental oxygen via nasal cannulas or face mask, both on my tanks and my portable oxygen concentrator.
3. Post-medication administration and next steps: This section reviews what I need after a respiratory crisis, and how to determine whether or not medical treatment is required. I told the staff about comfortable positioning, additional puffer administration, and what to expect after an emergency event.
Have you ever considered writing a respiratory protocol so others know how to best help you during an emergency?
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.