Should I Even Talk About Heart Transplant & Cancer?

I am alive and writing this blog because of the generosity of my heart donor and their family.

Heart Transplant donors must be deceased….Yes, this seems like an obvious statement to make, but I’ve had several people ask me “how is your donor doing?” I have to stifle my laughter, because I tend to find humor in the darkest situations, then I explain that my donor died.

I’ve had two people respond in disbelief and that’s when I had to explain that you need your heart to live and you only have one heart.

And no, they have not done a brain transplant (yet); this remains an urban legend.

I think they were confused with the most common type of transplant: the kidney transplant, where you can have a living donor and both can live with only one kidney.

Currently, there are 102,928 people in the US waiting for a kidney, whereas there are 4,014 waiting for a heart. Recieving a heart transplant is rare in a country of 300 million people, whereas living kidney donation is more common.

I don’t know anything about my donor. Due to privacy and ethics rules guiding transplant, I am not even allowed to know their age or gender. All I know is that I have a “young, vibrant heart,” at least that is what my transplant doctor told me.

At my one year “Heartiversay,” I wrote a letter to my donor family expressing my humility and gratitude. The social worker at the transplant clearinghouse confirmed that the family received my letter, but they did not reply with their written consent allowing us to communicate or for me to obtain any information. Communication between a donor family and recipient is like exchanging information in a closed adoption, you have to go through a third-party and both have to agree to the communication.

I share with you my thoughts about organ donation and my experience as a heart transplant Recipient, because I believe communication can be beneficial, but I also know that this is a very sensitive topic and taboo.

It’s taboo because heart transplant requires the traumatic, sudden death of another person, so that you can live. Unlike cancer treatment, you battle on your own and if you get a bone marrow transplant, the donor does not die.

I debate with myself every time I write a blog about organ transplant, should I put this information out there? Is it too personal? Will I scare someone on the Waitlist? Will I offend a Donor family? Will I discourage organ donation (goodness, I hope not! Please register to be an Organ Donor).

I think if you’re facing an organ transplant it’s helpful for some to know what you’re in for…I mean, I was 3 months on the Waitlist before I learned to say heart transplant “Recipient,” and not “survivor.” Faux pas! You don’t survive a transplant, you recieve a transplant.

It’s different language in the cancer world, when you’re in treatment you’re considered to be a “warrior” in the “battle,” and once your scans are clear or you reach a milestone in time (say, 1 year clear), then you’re a Cancer “Survivor.” I’ve battled cancer twice and I’m a proud “Cancer Survivor and Heart Transplant Recipient.”

Language is important.

Some Recipients are offended and/or have a deep emotional response to discussing their donor (or what they know about their donor). They do not like being asked, “so do know who your donor is?” This can be a triggoring question.

Others feel it’s important to share their donor’s picture and biography, especially on Transplant Anniversaries.

Sometimes I am very curious about my donor and other times I tell myself that this is my heart now and I can’t obsess about who had it before me. I respect that my donor family may be too grief stricken to engage me and the other recipients. I do send my prayers out to their family for the loss they have experienced. I can only imagine the depth of their grief.

But this leads me to ask, should I share such personal thoughts about my experiences with heart transplant and cancer?

I welcome your thoughts and comments. Thank you for taking the time to read my blog. And do consider being an organ donor, because lets face it you can’t take ’em with you!

Here is a YouTube video that I made 5 months before my transplant. I really struggled with this notion that Someone has to die, so that I can live….

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