PTSD is real…and weird

If you had asked me even a few months ago if I carried any PTSD with me from my heart transplant surgery, I’d probably have responded with something non-committal, like “sure, don’t we all have some form of PTSD?”  But I’ve been giving it a whole lot of thought lately and the answer is so much more nuanced and complicated than that.  And just so you all know, I’m not a doctor, nor a therapist.  These are all my own thoughts and experiences, with a few experiences from friends thrown in.

All of this reflection started at my dentist’s office a while ago.  The hygienist was cleaning my teeth and calmly asked me if I clenched my jaw/teeth a lot.  Truth is, I hadn’t given that much thought or really even noticed.  As I thought about it though, I realized that was a defense mechanism of mine.  When things got tough, or painful or complications arose, I would clench my jaw and take the next step forward.  For me it was like girding my loins for battle.  The preparation would just require a good clenched jaw.  Soon I was subconsciously doing that in my sleep (and apparently still do).  It makes sense, because some mornings I wake up with a sore jaw and wonder why.  

It got me thinking about what other kinds of post traumatic stress I carry with me and I realize that all of my senses carry some form of trigger for me.  Sight, sound, touch, smell,  and taste all trigger memories for me.  But then, don’t they for most everyone?  As a heart transplant recipient, some of those memories hit me at the oddest times and stop me in my tracks.  So, I thought I would start processing all of that, right here in public.  Oof – this is going to be way out of my comfort zone, but here we go.

Well, let’s start with touch.  I’ve got two of those that come to mind.  The first one is weird – at least it is for me.  And it starts with my right elbow.  I spent so much time in the hospital, that my right elbow was raw from resting against the rough hospital sheets (and probably from IV’s, PICC lines, etc. as well) and to this day, if I put my elbow down, I’m immediately brought back in my mind to a hospital bed and pain.  Claustrophobia is another common form of PTSD for many patients after a long hospitalization.  We’ve been intubated (sometimes multiple times), we’ve been confined to a bed and a room and when we feel confined now, in any way, a little panic sets in and we start to look for the exits.  One of the gifts of Covid for me was that on one of my recent hiking trips, the caves along the way had been closed, because it was impossible to maintain safe distance inside.  My husband was disappointed, but me?  I was quietly thrilled that I didn’t have to face that fear.  Ok, maybe not so quietly thrilled.  We’ve already covered these darn clenched jaws.  I just caught myself right now and had to consciously unclench my jaw.  Why?  I think my kidney function is a bit off right now and as a transplant recipient, that’s a concern.  The medications we take to keep our heart hidden from our immune system sometimes overwhelm our kidneys and the number of people that require a kidney transplant after receiving a new heart more than quadrupled between 1995 and 2008 (most recent study I could google, but it holds true today). Tomorrow I go in for testing and blood work which will tell us what we need to know.  And probably until the results come back, I will be subconsciously clenching my jaw.  I am preparing for battle.  And, truth be told, I’m preparing for battle every day.  A battle for my health, my new heart, to choose a positive outlook every day, for an ounce of normal in the weird Covid and hopefully soon to be post Covid world we live in now.  And maybe, you are too.  So together, let’s inhale….and exhale….and know that we’re good.  It’s ok to feel tense, as long as you recognize it and own it.  Don’t let it control you.  

Let’s move on to sight.  This is probably where I carry the least trauma.  But maybe you’re different.  I just recently had a right and left heart catheterization and realized that the mere sight of the cath lab makes my breath catch.  I had to do some intentional breathing exercises to get me past that.  My experience in the cath lab may be different than yours.  For all my body has been through, it doesn’t play well with most IV type medications and is super sensitive to dosage amounts and dye.  I have yet to go through a cath without a lengthy recovery due to one complication or another.  I have been in a cath lab more times than I can remember, and every time had some sort of complication. I have a friend who can’t see lightning without being taken back to the shock of her ICD (Implanted cardioverter defibrillator), which happened more than once while she was driving during a lightning storm. I have another friend for whom seeing a dish of hard candy takes her back to the trauma of a treatment because there were always dishes of hard candy in that space.  Sometimes even a color can be a trigger.  For some it’s that particular shade of blue you always see in hospital gowns.  Do you have trauma you hold in your vision?  We take in so much of the world through our eyes, it’s where we first take in all that happens to us.  It is how we all begin the  processing of our trauma. How are you processing?  Ok, let’s take another deep breath.  It’s time to move on.

Sound.  This is a big one for me, how about you?  And my sound is beeping.  From the time I had my first ICD surgery, I was told that when the battery wears down it would make an audible beeping noise.  And within two years, when I started to hear a beeping noise coming from my chest, I knew.  But it was too early for my battery to be having issues.  I had to have my ICD replaced three times before transplant.  And if you’ve ever spent much time in the hospital, you know that beeping is a fairly constant sound.  Even today, three years after my transplant and no longer with an ICD,  if I hear an unexplained beeping noise, I have to stop and figure out where it’s coming from.  I’ve even been known to stop conversations to ask “do you know where that sound is coming from’?  Is there a sound for you that takes you right back to a trauma?  How are you processing that?  Time for a deep breath again.  

Smell.  Oh gosh, smell.  That distinct disinfectant smell of the hospital for sure, the smell of a lidocaine patch, the smell of some medications, especially the liquid ones.  All of these and more take me back to trauma.  The weird almost burning smell with some procedures.  I’ve learned (and relearned) that we take in our trauma through all of our senses and that smell memory is held more firmly and more vividly than memories of events, or people.  That’s why smells, tastes, sounds, etc., both good and bad can immediately take us to a place and time.  Whether it’s the smell of your mom’s pie coming out of the oven and the warm feeling that brings with it, or the smell of the liquid antifungal medication that makes you recoil, smells can take you back to a place and time so quickly and without much warning.  How is your processing going?  Is it time to take another deep breath?  If you need to take some time and write down some of the sights, sounds, feelings and smells that bring you back to your trauma, do that.  Take the time.  Recognize your triggers and own them.  Just don’t let them own you.

And finally,  taste.  The salty metallic taste you get when they flush your IV line with saline.  Just writing those words brings me back to a hospital bed and a time of trauma. For me, though, the worst one is applesauce.  After my transplant, I had to relearn how to swallow.  They would feed me blue dyed applesauce and then thread a camera up my nose and down my throat to watch the swallowing process.  It was as uncomfortable as it sounds and I don’t think I could ever eat applesauce again without feeling the camera being threaded up my nose…  A lot of transplant patients have to take liquid antifungal medications for a while after transplant and both the bright tempera paint yellow color and the absolutely horrible taste of the Nystatin is a taste that sticks with you for life.  I have a friend for whom the taste of mint gum brings home trauma because she used it to get rid of the taste of the medication. Even ice chips can bring you back to some of the worst times of your life.  At times, it’s the only thing you’re allowed.   I think that taste is the most personal space where we hold trauma.  When I researched and talked to other patients, the responses were completely different and unique.

So, after we look these bits of trauma in the eye and acknowledge that we all have them and all have an effect on our lives, what do we do with it?  Well, everyone is different, but I will tell you how I’m handling it.  And I’m using the present tense on purpose as this is an ongoing process.  The first step you’ve either done or maybe this article has prompted you to start, which is to acknowledge that there is trauma and face it head on.  Once we recognize it’s there, it loses its power over us.  This may be something you train yourself to do, and something you have to repeat a lot.  Counseling is an amazing choice and helps build a new stronger foundation. One where you still can recognize your trauma, but you have a game plan to deal with it when it pops up in your life.  Creating a game plan is something you can do with your counselor.  So that when you are triggered by something that takes you back, you have a two or three step plan to respond to those triggers and keep moving forward.  For me, my faith is the primary way I deal with the trauma and triggers associated with transplant.  Taking everything to God and asking for His guidance through it all has gotten me through so much and He continues to walk right beside me throughout this adventure.  Creating a quiet space to pray, meditate, or journal, is part of that process.  Don’t let the busyness of life get between you and properly processing the trauma you’ve been through.  Being honest with family and friends is critical for me in dealing with trauma.  It’s vital for me to have a safe space to land where no one will tell me that I shouldn’t feel the way I do, or that I should “suck it up” and just be grateful.  Please don’t get me wrong, every morning I get to wake up, my first emotion is gratitude, but we can hold both the gratitude and the trauma together at the same time. 

No matter the health struggles that you’ve faced, whether it’s transplant or something else, the medical trauma that follows can either limit you or be kind of freeing.  And that, friends, is up to you.  It is your choice to either face it head on and walk through it, or pack it away.  And if you do that, it will always come back and it will take as much control over your life as you allow.  Let’s come up with a game plan to deal with trauma.  I’m not a therapist, but I know your team has a great one.  And that’s a good place to start.