Superheros You’re Not

As a healthcare professional, the word stoic has a more complex definition in the world of Heart Failure, Heart transplant and Ventricular Assist Devices.  The word stoic defined as a noun by Merriam-Webster as: a person who accepts what happens without complaining or showing emotion.  I feel this definition describes a large portion of patients that I care for.  They are all trying their best to be the ultimate Superhero but it does come at a cost.  You may think I am insane for believing that someone can be too stoic but I can tell you from experience, trying to be too stoic while dealing with heart failure and the transplant/VAD process may not be to the patients or their families’ advantage. 

What this group of patients endure, both physically and mentally during the VAD/Transplant process, is nothing short of a miracle.  My patients are the closest thing to real life superhero’s I will ever know.  Despite what they may think, they have the most impressive inner strength I have ever witnessed.  With that being said, everyone has a breaking point.  No one could or should be expected to navigate such a difficult road without a strong guide and an up-to-date map.  I have found that my patients will listen to and accept most pieces of “medical” advice that we give them.  However, when it comes to “emotional” advice, the hands immediately go over the ears and patients (and families) shut down.  I’m not sure why people view emotional/psychosocial/psychiatric support in such negative a way.  In my opinion, one of the keys to surviving this process in one piece is by keeping your own mental health and your families intact.   

As we know organ transplantation is not a perfect science and you are trading in one set of known problems during the pre-transplant course for a whole new set of potential and unfamiliar problems in the post-transplant course.  Some of my patients seem to be under the false impression that having a heart transplant is like waving a magic wand.  In addition to giving them a new lease on life with a heart transplant, it also has the power to make all their other problems disappear.  I love a good fairy tale BUT heart transplants fix failing hearts while giving patients a new lease on life.  It does NOT solve or fix all the problems in your life.  Having the appropriate coping skills is essential to succeed in both the pre-transplant and post-transplant phases of the heart failure process.  

Through many years in this field I have learned several important lessons that can be extremely useful to my patients and their families but at times I feel as if I am a more of a parent to my patients than an experienced transplant nurse.  I have good advice to give based on years of experience, but like my children, my patients are resistant to take this advice.   I can’t emphasize enough how important it is that my patients AND their families seek professional counseling in both the pre and post-transplant course.  No one should be expected to handle all the medial and emotional curve balls thrown at them with grace, control and a smile.  Everyone needs a sounding board that is independent of their significant other or closest family member.  Each person in the family goes through the same exact situation in completely different ways.  My patients and families have the very best intentions when it comes to dealing with this challenging time.  Each person tries so hard to keep that superhero mask on to protect their family members, but it’s just not a reasonable or healthy way to undergo this process.  As a transplant coordinator, it breaks my heart (no pun intended) to see my patients and their families exhaust all their individual coping resources during the pre-transplant phase.  By the time the patients get transplanted, the emotional well has run dry.  It is essential to have a trained professional outlet to provide an objective set of ears, a safe place to have an emotional release and someone to provide creative and professional coping tools for both the patient and their families.

I began this blog discussing the word stoic and I will end the blog discussing the word courageous. I realize the term courageous can be interpreted and applied to many different people and a multitude of situations.  Personally, the word courageous describes the powerful inner strength and determination that my patients have to live.  In my opinion my patients are courageous and the true definition of what hero’s really are.  I feel so honored and blessed to be a part of their lives.

Heather Cote, RN, BSN Transplant Co-ordinator Tufts Medical Center, Boston, MA