Lessons Learned in the ER: A PF Patient’s Experience

Lessons Learned in the ER: A PF Patient’s Experience

younger than 30

For those of us living with idiopathic pulmonary fibrosis (IPF), trips to the emergency room (ER) are inevitable. These trips could be due to fighting off a virus that affects our ability to breathe, an exacerbation, or simply a secondary symptom of our disease. Unfortunately, as a patient with this life-threatening illness, this is something I experience often, and recently I spent some time in the ER.

Despite having multiple teams that follow me as an outpatient for my IPF, including a pulmonologist, rheumatologist, cardiologist, and now a neurologist as a result of a recent concussion, I am always admitted to the hospital via the ER.

When I am unwell and unable to reach my medical teams as an outpatient, my safest next step is to go to the ER for assessment and treatment. This might take place entirely in the emergency department, or it might end in an admission to the hospital. Regardless of treatment location, the ER is an environment I am familiar with due to my IPF diagnosis.

During a recent visit to the ER, I had to think of some positive aspects of my experience, as unfortunately, I waited hours for assessment despite feeling like my symptoms were serious. I was triaged accordingly and then left to wait in a small area of the ER for over eight hours before a doctor could see me.

While I felt myself becoming upset and emotional about this, I knew there must have been higher priorities in the hospital. To occupy my mind while I waited for both the on-call physician’s assessment and the possible treatment, I began writing a list. This list compiled the lessons I learned from being a “frequent flyer” in the ER, and I thought I would share it with other IPF patients who also visit the ER often.

Following are some of the lessons:

  • Have patience! As someone who is generally impatient, this is a hard lesson to learn. During my most recent visit to the ER, it was certainly something I needed reminding of. What really helped me with my patience during the visit (and made me feel grateful as well) were the multiple overhead pages for a critical care physician required for a resuscitation. I was thankful that I was not the patient in desperate need of a physicians’ attention or critical enough to be their priority. Since I was stable despite not feeling well, this experience reminded me of the importance of having patience in the ER.
  • Be prepared. The reason for my recent ER visit was actually not my lungs, but rather a long-term headache; eventually diagnosed as a concussion. At times, the pain in my head was so significant that I didn’t want to have my eyes open when talking with the nurses. What I realized would have been helpful for me to have readily available was a list of the medications I regularly take, along with the dosages. I also learned that preparing questions about my symptoms and things I would like them to look for would have been helpful as well.
  • Advocate for your needs. One of the hardest things about ER visits for me is the placement of intravenous (IV) lines. This is because my veins roll away or collapse due to such frequent blood work, and it becomes difficult to get a line in my arm, foot, or neck. While talking to the nurse after multiple failed IV lines, I suggested she try my hand, as they usually have success there despite it being very tender. She let me know that I could advocate for this in the future to avoid the pain and trauma of multiple IV attempts.
  • Trust your instincts. I do not like visiting the ER if I can avoid it, and usually when I go in for check-ups, it is for something I feel warrants immediate attention. Going in for a headache recently was really hard for me because I didn’t feel it was emergent enough to visit the ER. My instincts told me that something wasn’t right, though, and that I didn’t just have a headache. I also advocated for a specific scan I thought would give us more information. I am thankful I trusted my instincts, as this test was how my concussion was diagnosed and subsequently will be treated.

 Do you have any lessons you’ve learned from visiting the ER as an IPF patient?

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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.

10 comments

    • Charlene Marshall says:

      Hi Gerry,

      Thanks for your message, and I am sorry if our emails regarding new columns published on Pulmonary Fibrosis News are bothersome. Please ensure you update / edit your settings and e-mail preferences if you would no longer like to receive our emails. This will ensure you do not receive emails in future, if you don’t wish to and you can re-subscribe any time. I hope this helps!

      Warm regards,
      Charlene.

  1. Sandy says:

    Hi Charlene!

    When going to the ER by ambulance, I ask them to not put an IV in during the ride. This is because it usually doesn’t work because my veins move but mostly because they can only use my right arm (breast cancer on left side) and the bed in the ambulance is best when done on your left arm. They’ve missed too many times on me.

    I also always carry a list of my meds with my doctors names, addresses and phone numbers.

    • Charlene Marshall says:

      Hi Sandy,

      Thanks for reading my column and sharing your experience… good to know! I often find ambulance rides traumatic in general (I was intubated urgently once in an ambulance and it was done wrong, so it was terrible and traumatic) so avoiding IVs during this time is a good thing to note as well. Thanks for sharing, although I hope you haven’t discovered this due to traumatic experiences.

      Thanks again for reading and sharing Sandy. I hope you’re doing well 🙂

      Charlene.

  2. Barbara Powell says:

    ER doctors focus on the chief complaint when reading the chart – so when they are listening to your chest and get a look on their face that says, “I have some terrible news for you.” Let them off the hook and tell them you have PF. 🙂
    Barbara

    • Charlene Marshall says:

      Hi Barbara,
      I like the humility in this post – it is so important to our coping, and is a nice break from all the serious discussions we have with doctors on the regular. By telling them, instead of them telling us the bad news, I bet gives them a bit of a break as well 🙂

      Thanks for reading!
      Charlene.

  3. Katie Broach says:

    my experience was as an in-patient in February following a brain bleed. on my last day, my nurse had a cold. I am in my 5th year with IPF after diagnosis and have been so careful to avoid colds, flu, etc. only to get a terrible virus that has set me back in my disease. Granted hospitals are full of germs but i resent catching this horrible virus from a caregiver. After 3 weeks home bound, and 3 additional weeks, I am still struggling. I had out lived my cough and it has returned. I have my first inhaler/puffer and am struggling to regain some energy. I will be 80 this month so my story is not nearly so critical as the very young with this disease. I thank God daily for retirement. Folks who live alone, however, know how difficult any ailment is. Every thing is such an effort, the simplest meal, etc.

    • Charlene Marshall says:

      Hi Katie,

      Thank you so much for sharing your story with us, and for reading my columns. I am so sorry to hear of your brain bleed in February, and to hear of your experience getting sick from the hospital. I know this can happen often from germ-filled environments such as the hospital, clinics, etc, but nonetheless it must feel awful to have caught this from a caregiver, as you said. Especially since it has set you back in your disease and finds you struggling to breathe. I’m so sorry to hear this, and I wish that nurse should have known better!

      Living alone with any type of chronic illness is really tiring, I agree but please don’t underestimate your importance due to your age. Everyone dealing with IPF has their own story, and regardless of age, this disease is equally cruel on all of us. I do hope you begin to improve from this cold soon, and that you remain well for as long as possible. Thanks for writing Katie, and wishing you nothing but the very best.

      Warm regards,
      Charlene.

  4. Sue bailor says:

    I had the experience of dealing with complete septic shock with my IPF. I went into the ER and was lucky to have a doctor who recognized my condition. I too am so careful when it comes to germs, but unfortunately something took hold this time. I am a lucky survivor, having spent over 4 months away from home in ICU, nursing home and rehab centers. It is tough to decide if some of my issues is related to my IPF or caused by the septic shock. Has anyone dealt with this problem

    • Charlene Marshall says:

      Hi Sue,

      Thank you for reading my columns and contributing your experience, although I am so sorry to hear you had to deal with septic shock. That must have been terrible for you! Do you know if it was a viral or bacterial infection that caused this? I know with septic shock, things can progress so quickly and it can get scary very fast. I am so glad you’re a survivor of it, but I can imagine not knowing some of the symptoms you experience, whether they are due to the septic shock or IPF, can be frustrating. I can’t say this is anything I’ve ever dealt with, thankfully and I don’t know if any of my friends with IPF have either. Hopefully someone can share some insight with you though. Thanks again for sharing, and wishing you nothing but the best!

      Warm regards,
      Charlene.

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