Writing Your Own Respiratory Protocol

Writing Your Own Respiratory Protocol

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?

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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.

6 comments

  1. Terry Moriarty says:

    Hi Charlene,

    I never thought of doing this when I was working. What a great idea that your co-workers know the signs of trouble and what to do.

    Now that I’m retired and live alone, my protocol is quite different, but I think can be useful for anyone who spends extended time alone.

    1. In case of power outage, I have a tank placed near my bed. I also keep battery-power lamps scattered around the house. I figure if the power goes out when it’s light out, I’ll be able to walk to the tank quickly enough. But if it happens when asleep, I could be really disoriented. Thus tank next to the bed. The power company knows I’m on oxygen and are suppose to respind appropriately, if they can.
    2. I use a medical alert system with fall detection. It’s cellular-based, so works when away from home.
    3 I wear a medical alert bracelet with my son’s phone number on it and states oxygen required 24/7. I got just the engraved part that I had attached to a pretty bracelet, so it isn’t obvious I’m wearing one, except to someone trying to take my pulse.
    4. My city has an emergency program I registered for that let’s them know the code to my front door and which neighbors have a key.
    5. I use my POC mostly, but carry tanks in my car just in case. I have one strapped into the front seat so I can turn it on fast if the POC should fail.

    I can’t think of anything else I can do to prepare for an incident.

    • Charlene Marshall says:

      Hi Terry,

      Nice to hear from you, thanks for reading my columns and connecting via the comments! Thanks for your kind words – it just brings me another level of comfort knowing that my colleagues know how to help (even initially) in the event of an emergency. They know to call an ambulance if ever in doubt their efforts aren’t enough, or if I’m not recovering but having a training for everyone to at least know the basics equips both of us with confidence.

      Thank you for sharing your protocol of living at home; these are excellent tips and something I think we should all consider! Glad the power company knows of your oxygen needs, and hopefully can respond appropriately when there is an outage. I also keep a tank beside my bed, in addition to my concentrator if there is an outage.

      Great idea about the medical alert system as well, which detects a fall. Very important! I wear a medical alert as well, and pay for the yearly subscription for my medical records to be updated and accessible 24/7 if the number is called and my name is provided. Good idea re: the city emergency program. How did you find out your city had this? I want to look into it as I could provide them the code to my garage to get into the house as well.

      Thanks for sharing these Terry, excellent ideas here that I think will benefit others too! I may translate this into a forum post (giving you credit of course) for others to consider who live alone.

      take care,
      Charlene.

  2. Steve Dragoo says:

    Charlene,

    This is a great article with the best practical steps I have seen. Doctors should be trained on this so it can be spread to PT and teaching patients the importance of what to do in a breathing crisis.

    Thank you!
    Steve

    • Charlene Marshall says:

      Thanks my friend!
      Stay tuned – Terry wrote a great response outlining a protocol for use at home and I think we could all benefit from that as well. We can never be too cautious or prepared when it comes to breathing emergencies.
      Charlene.

  3. Patricia Arthur says:

    I’ve never considered writing a respiratory protocol, although it makes sense. My situation is different though, I’m not on oxygen or inhalers. The only medication I take for IPF is Ofev. Even with my Dad who died of ILD in 1974 and my sister who died of IPF in 2011; neither of which were on medication or inhalers for the disease, the only thing we knew to do was to turn up their O2 and call 911. As my illness which was diagnosed on 4/16/18 progresses I suppose it might be a good idea to write a protocol – although I really don’t know where to start.

    • Charlene Marshall says:

      Hi Patricia,

      Thanks for reading my column and reaching out via the comments. The initial idea was from our HR director, but the push to actually train people on my needs (as opposed to just writing it down) was something I initiated. Sometimes, even the simple steps of putting on supplemental 02 and calling 911 is enough though. Do you want me to send you my actual protocol we used? I’m happy to do that if you want, just provide me with your email address and you can use that template.

      Cheers,
      Charlene.

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