Thru A Nurse’s Eyes: The Other Side Of The Rails

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Guest post by Terri Thieret, RN


  • 54 days on ECMO
  • Sedated and paralyzed for 7 weeks
  • Intubated x 3 months
  • 84 days in SICU
  • 26 days IPR (TOTAL 110 days hospitalization)
  • Bleeding-40units RBCS, 10pk PLT, 4 units FFP
  • Clots- LEFT brachial vein, b/l common femoral veins
  • Pancytopenia
  • Lumbar pressure ulcer (5”x 3”x 3”) took 1 yr to heal
  • VAP
  • UTI
  • Extensive Home PT/OT secondary to Critical Illness
  • Myopathy
  • Ongoing OUT PT Physical therapy
  • Depression
  • Residual Pulmonary Fibrosis-requiring home O2

Patient: 47 yr old female, no PMHX, wife, mother of 2 girls and a critical care nurse.   Culprit: H1N1 pneumonia-ARDS.

This patient was me.

I have been a nurse for 25 years at a large, inner city, level 1 trauma center in Pittsburgh.  My entire career has been dedicated to taking care of patients like this.  Never in my worst nightmare did I ever think I would become one of them.  Being a patient is indescribable, especially when your medical resume reads like an epitaph.  It was humbling, humiliating, embarrassing, painful, incredibly frightening at times, and an overwhelmingly eye opening experience that has forced me to look at the nurse that I was.

Once I was conscious, and able to absorb the chronicles of my autobiography for the previous 2 1/2 months, I needed time to feel, to really comprehend what happened to me.  The anxiety arising from the inability to breathe was unspeakable and exhausting.  It is forever embedded in my memories.  Before I knew it I was intubated, sedated, and placed on ECMO.  The nightmare had begun.

I’m now told its March.  I cannot walk, talk, sit, or stand.  I cannot lift my limbs or move my hands and yet I worry about being a difficult patient.  I’m paralyzed with tubes everywhere.  I “lip” mortified apologies to the nurses who have to take care of the many things that I cannot. Most smile and reassure me, some say nothing; all of them so casual about my nakedness.  I haven’t seen my children, my husband is refusing to take me home, and who let these cats in here?  They are running around everywhere!

Finally, after 86 long, arduous days in the ICU, I am transferred to an In Patient Rehabilitation Hospital.  The 20 minute ride in an ambulance is exhilarating.  The cool air on my face feels amazing, and the crisp chilly air, as I inhale, smells fantastic and clean.  There are millions of stars. It is beautiful.  I haven’t been outside in months.

The hard work was just beginning.  The month in rehab was excruciating, I cried every day.  My experiences and interactions with the many that cared for me have left impressions on me like none other; some good, some not so good.

Everyone wants a compassionate, caring, competent nurse, but some lessons I learned that have impacted the nurse that I am now are these:

When talking to a patient you don’t know well, you just maybe talking to someone who knows way more about whatever you’re talking about than you do:  I did not divulge to many that I was a nurse, unless they inquired.  I actually overheard a nurse outside my door saying “Can you believe it, she’s 48 years old and just had pneumonia, and she doesn’t do a thing!”  Before I realized it I blurted out “I’m paralyzed, not deaf!”

It wasn’t that I didn’t do anything, I couldn’t do anything.  Patient 1- Nurse 0

Being gravely ill, there is a universal constant that defines you.  You are vulnerable.  You relinquish all control.  Aside from almost dying and trying to wrap your head around that unsettling fact, you suddenly find yourself grossly dependent and often times disabled, whether it be physically, mentally, or spiritually.

I realized that there is a level of vulnerability that you cannot obtain from being just at the bedside, but by only from experiencing it.

Example: I was on Lasix and it would “Hit” approximately 20 minutes from the taking.  I pressed call light and it rang and rang, suddenly it was picked up…….oh thank GOD, but before I could respond, the person hung it up!  I rang it again, same thing happened, so I started calling out for someone to help me, as the nurse came in angrily she said “What is it you need?”   When I responded she replied “Next time if we cannot get to you, just go in the bed!”   WHAT THE HELL!  I am not even going to remark about this!   Patient 2- Nurse IDIOT!

As a caregiver, you don’t always need to be in a good mood, but look at me, do not dismiss my concerns, talk to me – not at me, respect my opinion and my privacy, remember who I used to be, and be grateful… get to go home at the end of your shift.

It does matter if you eat lunch and take a break.  I want you to stay in tuned to what I need.  Please take care of yourself so you can take care of me.  I need to know I can rely on you.  It doesn’t matter if you were at the top of your class, as long as you’re on top of your game with my medications, my orders, and my treatments.

Thank you for always inquiring about my pain, I was for the most part comfortable, but truth is everything hurt.  IV insertion, blood draws, dressing changes, EKGs, TED hose, foley, mouth care, rolling in bed, downsizing trach, your hair, yes your hair.  But ironically no one ever inquired as to my level of fear.  After all fear is pain’s companion, yes?  And I cared for these types of patients, I had the knowledge base.  I was scared out of my mind.  I knew everything that was going on and then some.  Fear of knowledge, I call it.  I understood the complications and the severity of it all.  I WAS PETRIFIED.

Truth is, an accident or illness can strike at any time, and no matter the cause, sometimes the only thing you can do is try to cope.   Not sure what my purpose for surviving was, still trying to figure that one out.

I have always had sympathy, but now I have empathy, and that has made me a better person and nurse.

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7 thoughts on “Thru A Nurse’s Eyes: The Other Side Of The Rails”

  1. Please let us know how you are doing. I think your personal story will be a huge eye opener for so many RN's, LPN's and CNA's. I hope that you have been able to recover as much as humanly possible. God Speed Frittzie

  2. Thank you for sharing this. In spite of all you had to endure, I am reading this and thinking how great of a writer that you truly are. You definitely need to write and publish a book. Your story, as horrible as it was, will be an inspiration to many. Your story needs to be read by many nurses entering the field, as well as patients in the same predicament as you once were.

    I can't imagine the feelings that you were going through, but I do know that it had to be extremely hard. You are a true survivor. We are all proud of what you have accomplished. I told you how scared I was for you.

    I know that your battle has changed many things for you, good and bad, but your drive and determination should be heard.

    We love you T.

  3. Thanks for the wonderful comments. I'm so glad you enjoyed reading Terri's story. She is doing well and I will share your comments with her!
    Great lessons for all nurses to really "see" patients and care for them as they would want to be cared for too!

    Kind regards

  4. Terry I felt every word. What a brave piece to write. I too had a life threatening event when I was 20. A head on car accident where my older brother was killed and my mother almost lost me too. I feel your pain with every word, I relived every step. Perhaps thats how I was a compassionate transplant coordinator for so long. I truly believed that transplant and all of the hard work associated with it was my reason for living. I did it well for many years and truly believed that I was doing God work and I actually was. I do not regret one second. Now that I am on a new journey, God again has saved me and has a new plan for me. I feel truly blessed as you do. I have always believed that you were one of the best critical care nurses and transplant coordinator that I have ever known. Whatever path you choose or whatever path chooses you, trust and believe in God's plan and you too will continued to be blessed. May the force be with you.

  5. Hi Renee,

    What a great list of posts.

    The work you are doing regarding bullying in nursing is so, so important. As an advocate for nurses with disabilities, I hear from so many nurses with disabilities who have been bullied. Of course, I refer to your work!

    I also loved the post…"from the other side of the rails"…honest, raw at times…lessons for all of us.
    Keep up the great work and Happy New Year!

  6. Thanks Donna. I loved this post too. When Terri shared her story with me, I knew I had to post it. Nurses should never forget that there is a human behind everything we do.

    Thank you!

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