Month: February 2018

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Ventilators

This week, I attended a course designed to quickly reeducate nurses coming back to the critical care realm who have been gone awhile.  It was fast-paced, intense, and eye-opening.  There is a lot of information I had forgotten–I’ve been gone over 10 years–and some new things too.  When I worked in the ICU before, I was a different person than who I am today, with a different, new set of life experiences and skills.  And of course, critical care has changed a lot too.

As a part of our ventilator review, we each had to be placed on one for a few minutes.  This scary exercise was to demonstrate what it’s like to be on the receiving end of life support.  The prospect terrified me.  Even though we did it through mouthpieces (not endotracheal tubes) and in a controlled environment, I worried I might panic, blow a lung, or have an asthma attack.

The respiratory therapist gave me the option of participating, given the problems I have with my lungs and heart. But I felt as though going through the experience would give me more empathy and understanding of people on these machines.

To call being on a ventilator a harrowing experience is putting it lightly.  The therapist placed me on the “easiest” settings (which he did for everyone).  Even the minimal dose of continous positive airway pressure (CPAP) was very uncomfortable.  It felt as if air was being shoved down my throat.  We progressed to pressure support, and I had to take a little break.  The final demonstration was pressure control ventilation, set ridiculously low compared to what patients are prescribed.  It was like walking outside into hurricane-force winds face-first.  It was a blast that puffed my cheeks out forcefully and made my lips and fingers numb (hyperventilation, brought on by the ventilator). It certainly was an eye–and airway–opener!

I was prepared for this situation.  The average non-medical person who gets pneumonia and is waking, confused, from sedation in the ICU will be caught completely off guard.  To add to the terror, that person will have an endotracheal tube making him or her gag and feel like choking.  No wonder these people try to grab their tubes and fight so hard–they panic!  There is absolutely nothing normal about ventilator breaths, and even though the machine is helping you, it feels as though you cannot breathe.

This has shed new light on why people “freak out” as they do in the ICU, and might explain some of the psychosis, PTSD, and cognitive changes we sometimes see when people move out of intensive care.  This experience will help me to communicate more effectively with patients and their families.

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Jill and Jansie

My first night working in the ICU after nearly eleven years went well. I was very nervous going in, with the same feelings I have before going on stage or stepping onto the glass at the Sears Tower observation deck, the Chicago streets 100 floors below me.  As in those two situations, I boldly went ahead with my new job.  Stepping through the ICU doors was an act of gritty courage.

My preceptor and I were assigned to two women I’ll call Jill and Jansie (Jansie is the name I chose for my novel’s main character).  I will muddy some of the details for the sake of patient privacy.

Jill was a twentysomething woman who had taken an overdose and was on a ventilator.  She was found unconscious by her aunt.  They were supposed to go shopping together and Jill didn’t show up.  Jill’s boyfriend alerted the police in the meantime to go and check on Jill, based on a cryptic text she had sent him.  Jill had a history of addiction to various drugs.  Her suicide note stated “I’m tired of fighting”.  When I entered Jill’s room, I saw a tiny young woman whose size and pretty face belied the rumors of her violent nature.  She was adorned with tattoos of roses and butterflies and messages of encouragement.

Jansie was in the adjacent room. She was middle-aged and had suffered complications following an orthopedic procedure.  The root of Jansie’s problem turned out to be pulmonary hypertension and mild congestive heart failure.  This was all new to Jansie, who was crying while trying to watch the Olympics to distract herself when I entered her room.  Jansie’s first words to me were an apology for crying and an expression of great fear and frustration.  Her entire life had turned upside down in the past month, and she was fearful of both death and burdening her wife.  Her feelings were amplified by new, chronic pain from a neck injury.  Several times throughout the night, I found Jansie sobbing.  She expressed fear that she will never be the same and asked why this was happening to her.

i felt a bond with both women, especially with Jansie.  I remember the flood of terror that bowled me over when I was first diagnosed with PH.  My own chronic pain from nerve compression and arthritis in my neck struck in 2015 and stayed with me, adding an even darker shade to life.  It peeled my fingers from the edge of the cliff PH had thrown me over, and I went into emotional freefall.  I shared my experience with Jansie, with the hope she’ll see I’m able to live a fairly normal life five years into my diagnosis.  I caught a fleeting look of reassurance on her face, and she stopped crying.  I even got a few laughs out of her with my crazy antics (“You can be G.I. Jansie in the war with your fear of PH.  You can even shave your head like Demi Moore if you want!”). Then the next wave of shooting pain would hit and take her down again.

Jill reminded me of myself, as I was three weeks ago.  The police came to do a wellness check on me.  My bank notified them I felt like harming myself over my financial situation.  I was in a dire panic that night, beating myself up for what I’d done, angry as to why I have compulsive and addictive tendencies, afraid of what I’d gotten into.  I felt hopeless and saw no way out.  Jill also reminded me of two young women–one of them a teenager–in my recovery group.  Those ladies are struggling with drug addiction, and as time passes, two kind but hurting souls have emerged from under their anger.  My addiction is overspending, but I do it for many of the same reasons: to deal with “something missing” and to make reality disappear for a while.  Without it, my anger and panic flare.  I suspect there is a wounded girl under Jill’s violent facade, and I know how “wounded” feels.  Mental illness and addiction are two highly stigmatized problems, and intense shame goes with them.  I could feel much of Jill’s emotional pain.

Perhaps my problems can offer rays of hope for the people I will take care of in the ICU.  Maybe they’ll see I am the type of person who doesn’t stop, and it’s possible to push forward with life despite an incurable condition, pain, and living without my “substance”. Maybe they will look at me and see someone making the best of things, putting one foot in front of the other, one day at a time, and see that I embody possibility. I am “tired of fighting” most days too, but I have learned to keep moving and working and learning from my experiences.  I hope my patients will see that.

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Flow With Hope

I am the author of two blogs.  At times, this can be confusing.  Like today: I am not sure whether this post is more appropriate for this blog or the other.

The answer is: both.

I attended a recovery meeting last night and, as usual, it was dynamic, engaging, and helpful.  I am there because of compulsive spending, debt, and online games.  Most are there for alcohol and drug addiction.  Others have “soft” addictions like mine.  Soft addictions include food, sex, gambling, stealing, cutting/self harm, and compulsive spending/shopping.  These have as much power to destroy lives as the “hard” addictions.

The meeting was led by a dynamic and energetic facilitator who speaks well and knows her stuff.  Of all meetings I go to, I like hers the best.  Last night, she brought up the concept of “flowing with hope”.  This means to extend hopefulness to others.

When you feel as though your own hope is miniscule or even zero in the face of your chronic illness or other overwhelming problem, how can you possibly extend it to those around you?  The answer is to “fake it”.  I don’t mean be fake, or offer false hope.  If you are like most people, you have more hope for others than you do for yourself.

Extending hope to others will help both you and the recipients.  First, find what you can be grateful for in your own life (there is a lot, regardless of your circumstances).  In my case, I can be grateful for a day when I can breathe well and do normal things like climb stairs and hike without my legs getting heavy.  I am grateful for the time I’ve been given, considering the average survival time after diagnosis for my lung disease is 3-10 years.  I am on year 5, at least.  It’s probable I had the disease for a few years before diagnosis.  Some sources say you can survive up to 20 years these days, with the right treatment and expert care.  In other words, I “never know”.  So days when I can breathe and be close to “normal”, and the time I have been given are two things for which I am grateful.  You might have a dog or cat sitting at your feet as you read this.  You might have food in your refrigerator.  You may have only one cycle of chemo to go.  You might have qualified for the Boston Marathon despite your disease.  Or there are plenty of family and friends around you as you are in the throes of pain, nausea, fear, and depair.

Once you have found two or three things to be thankful for, pay it forward.  Pay it forward with hope.  Stop talking negatively to other people, even it only means staying neutral.  Encourage them and lift them up in small ways.  When you do that, hope flows through you.  It overflows.  And in the process, it leaves a trace within you each time.

I have a tattoo on my inner forearm that reads “Help people.  EVERYONE!”  I put it there to remind me to be on the lookout for people who need any kind of help.  Hold doors open for people.  Smile at them.  Raise money for places like St. Jude Children’s Hospital, Partners in Health, or the Leukemia and Lymphoma Society.  That’s what I do to get out of my own brain, and to be useful.  By helping people, I extend hope to them.

The problem is, I don’t do it every day.  That’s my goal for February, or for Lent.  Let hope flow to others each day, for 40 days.  I think I will.

Finally, the leader stated we haven’t evolved as a species by beating ourselves up.  We are hard-wired for survival, and beating ourselves up goes against all our program.  The resulting internal conflict leads to inner turmoil and unrest, and people will use or engage in their dysfunctional behavior to “make it go away” or cover their feelings.  But doing something for someone else while in this state smothers the negativity.  To flow with hope is in line with our need to survive, and is good for all involved.