"Whatever it is, you can do it for six months." Dad's favorite adage when I was at my lowest post-op. You can tolerate difficulty, stress, or hardship for six months. Once that passes, things will get easier.
In a lot of ways, he is right.
Six months have passed and my life has improved tremendously.
In symptoms most tied to my identity: My anxiety is much lower now that the steroids are off, my diabetes has been resolved, and I am getting my face back. Food is no longer a source of great distress, my weight is, in measures, decreasing, and I find joy in small moments (walking to the car from the grocery store I walked without being out of breath= happy!). So, in many ways, I'm finally getting to be (gasp) happy.
At six months I decided to share this image which has now become quite popular:
The photo show my heart, held in my hands. The experience was surreal. After transplant the heart immediately went to the Ashley Lab to have samples collected for both research study and their tissue bank. The process is rather simple: collect the heart from the OR directly after removal, preserve the heart in "cardioplegia, a high potassium solution, which stops electrical activity of the heart and preserves it while [they] take samples." (Ashley Lab Tissue Procurement Coordinator), and note time/date while taking samples.
We were lucky enough to visit the lab and the two lovely coordinators set up their station as if the heart had just been procured. We then got to look at the real time stamp and see the collected pieces.
Pathology keeps the tissue after it has been returned back to the OR. They then test the tissue to determine if heart transplant was truly necessary. I know what you're thinking: wouldn't they want to be sure of this BEFORE taking it out? But they are: this is just to prove for the record that the heart really was in end-stage heart failure and was appropriately replaced to save the patient.
It was in the Path Lab that we got to experience the pieces and hold them.
I had never been in true denial of needing a transplant: I just didn't think it was real. I believed the doctors, understood I risked multi-organ failure if I did not consent, and was equally adamant about moving up on the list when necessary. But I kept feeling like I was so far away from really needing it. I never experienced the true terror of decline. I stayed working until three weeks prior to transplant and, functionally, remained relatively the same. I now know how fortunate I was to not be in such dire need that hospitalization or worse was required.
Yet, it was not until I held my heart, my buddy that had gotten me through the first twenty-four years of my life, that I saw how sick she truly was: how much she needed me to replace her.
It was a catharsis, a vindication, and reassurance to hold this part of me so close to the chest it once occupied. This heart had seen me through my first steps, first words, first grade, first night away from home, first friends, first drink, first love, first break up, first disappointments, and first triumphs. It was my first, and it was my friend. And in saying goodbye and thank you I became that much more grateful and open to all the new experiences, all the "firsts," that I will share with this new heart.
Furthermore, I inquired about taking my heart (which is no longer being studied) and having it cremated. It has never been done at Stanford, but pathology is allowing me to try. This freaks some people out even more than my holding it, but consider: isn't it better to have the ashes scattered among places of cardiac significance rather than have it end up in the Stanford incinerator? Besides, I care not what you think, oh reader: this blog is not for you.
Coming up next time: Writing to my donor- how do you say thank you for a gift larger than life?
Currently Listening To:
“Years (A Look Back)” by Keith Kenniff, from Welcome to it All
Avid enthusiasts will recognize this piece from the Comcast Commercial that plays on NBC during Primetime of the 31st Olympics in Rio. Others may recognize the tune from the Facebook campaign "Your Facebook Years in Review."
The tune is simple, lightly pulsing violins overlaid with melodic piano that weave both intricately and delicately. Patriotic piping strings, playfully harmonic piano tones, and mirrored lower cello harmonics weave through the fabric of experiences: the highs and lows. You can practically see the syncopated music-box-like melody skip playfully across animated sheet music, like in a Disney film. In the background of the commercial we see a montage of medical marvels, triumphs of Olympians, new discoveries of children, animated clips of the latest hits, and families together on the couch; the great American image. Comcast "welcoming you to it all."
It's every bit as uplighting and nostalgic as you might think.
This is your life: welcome to it all.