What’s It Like?

It’s not uncommon that I am asked: “what’s it like to have someone else’s heart beating inside your chest”. As you can imagine this isn’t a “hi, how are you?” type of question where you reflexively answer “I’m great; you?”. No, the answer to this question is multi-faceted and quite complex involving the heart, body, mind, and soul.

I’d like to preface this post with two foundational truths of organ donation.

  1. Organ donation is a gift, a decision made only by the donor family without outside influence except for the education provided about the process.
  2. No one is entitled to a new heart, kidney, liver, et cetera; the recipient’s role is awaiting organ transplantation knowing that they may never receive a donated organ.

Heart and Mind:

The heart is so very special and our culture places a lot of emphasis on it. We believe that it gives rise to our emotions though in reality our emotions are rooted in our brains. Our hearts respond to our emotions by an increase in rate and blood pressure. Our minds attach meaning, articulate our emotions if you will.

My experience of having my donor’s heart within my chest is one account; there are thousands of accounts. Each account is different, so please do not generalize to other recipients you may know.

When my donor’s heart was seated, stitched within my chest, ties between my heart and my body were severed. For me, this meant that I experienced a different response to the fight-flight-freeze response of the sympathetic nervous system. Norepinephrine, epinephrine, cortisol, dopamine, and serotonin no longer impacted my heart. I relied on my mind to know how to react in potentially harmful, dangerous, or unexpected situations.

So, how does this impact me?

Well, my transplant engulfed the summer that our son would have been learning to swim, so he was not the strongest swimmer. When we were around water or he was in the water, I was either with him or watching him like a hawk in case he wandered into deep waters and began to struggle.

There was one occasion that is forever etched in my memory. We were swimming with friends, and he had a float, but no life vest. He drifted into the deep end [and] lost his grip on the float. He was struggling and frightened. His fight-flight-freeze response kicked in, but so did I sans the racing heart, increase in strength, and blood pressure.

You see, I knew in my mind from my life experience that if I didn’t reach him, he would drown. I reacted in short order, and he was fine. My heart is most definitely a powerhouse, In fact, it essentially operates independently of my body serving as its own central nervous system.

Another example is my heart rate. At baseline it beats 100 beats per minute; however, that rate is paced, determined by my donor’s heart, her SA node, the mechanism of the heart that determines heart rate, oversimplification alert. It rarely deviates from 100 unless I am asleep, then it decreases to ~80 beats per minute.

And then, there is the experience of my emotions. I can remember sitting with one of my best friends ~3 years after the transplant and sharing with her that I could weep over something, but it felt disingenuous. My body and heart were not aligned with the emotion I was experiencing. Every emotion felt different, and at the end of the day, I missed the way it used to be.

It made me sad and no one understood.

When I brought this experience to my local transplant team, they provided a physiological reason explaining that my heart was no longer innervated, connected to my nervous system. They followed that with the fact that my heart could reconnect with my nervous system, but it was unlikely. As if that news wasn’t enough, I was also met with the ‘what do you have to be sad about, you’re alive’ sentiment which speaks to the judgment [and] shame that I wrote about here.

Needless to say, I found a new local transplant team!

Then, there is survivor’s guilt, a phenomenon that some experience when they have survived a life-threatening event and others haven’t. Whether you survived a war zone, the Holocaust, a natural disaster, cancer, or a transplant, doesn’t matter; you are at risk of experiencing survivor’s guilt. The symptoms of survivor’s guilt are almost identical to Post Traumatic Stress Disorder (PTSD).

Heart transplant necessarily means that someone has died; it does not necessarily mean that the recipient of the heart survives though that is a common belief.

I survived heart failure, a life-threatening event; my donor experienced a life-threatening event, but my donor died. Oh, how I grieved the death of a person that I never knew [and] oh, how I gave and continue to give thanks that my donor’s family afforded me to an opportunity to live.

After the grief came guilt. The realization that I had become the steward of someone else’s heart was and still is overwhelming at times. As I’ve reflected through the years, I think there have been a few critical things that I had to reconcile in order to fully embrace my donor’s heart as my own.

  1. My need for a new heart was entirely separate from my donor’s death.
  2. My donor didn’t choose to die for me; her death was an accident and her family honored her desire to be an organ donor.
  3. In taking care of, protecting her heart, in living fully here and now, I honor her life.

Full Disclosure: I have struggled and at times still struggle to be fully present in the here [and] now. I have, however, taken outstanding care of her heart, my heart seeking to protect my health and prevent rejection every step of the way.

I must share with you that I met my donor’s dad ~6 years ago after talking with him by phone for the first time on 07/01/11 [and] multiple time thereafter. During our very first conversation, when I shared my guilt with him, he told me “her heart is your heart” and encouraged me to live with abandon the life I’d been gifted.

Can you imagine how difficult that must have been for him to say?! I know you can’t because I can’t. I give thanks for the permission, the charge he gave me that day. Our conversation was where my healing began.

I’ll save body and soul for another post, another day.

6 thoughts on “What’s It Like?

    1. It’s been full of ups and downs, thick and thin for sure, but I trust the journey, the lessons it has held, [and] will surely hold in the future whether good, bad, or ugly though I do pray for the good! ~Steph

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