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…..you 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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