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Challenge: Open Discussion

A Heart-to-Heart about Talking to Transplant Recipients and Their Families

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When I wrote the Letter to the Mother of my Son’s Organ Donor, I was shocked and overwhelmed by the number of supportive responses I received from other transplant recipients and family members of organ donors. I guess I never really understood how many people are affected by organ donation firsthand. I think that’s because most of the conversation circling around organ donation stems from advocacy for being a donor, rather than the actual experiences of being a donor or a recipient. Once someone becomes a donor or a recipient, it’s almost as if they enter this secret society. It’s like Fight Club. And the number one rule of Fight Club is you don’t talk about Fight Club.

Which makes sense, right? Let’s be honest here. When I talk about Mr. Snuggles with people who have had similar experiences, it’s like talking to family; they get it. They’ve been there, done that, gotten the t-shirt. But, from my personal experience (and I’ll be the first to concede, everyone’s experience is unique and different; my experiences are by no means a universal truth), discussing organ donation with someone who hasn’t experienced it themselves is kind of a downer. When I tell them for the first time that Mr. Snuggles had a heart transplant, their first response is a stunned expression followed immediately by some variant of “Oh my God, that must have been so awful. I’m so sorry.” After I assure them that he’s fine now, their eyes fall to their feet, and there is this inevitable pregnant pause as they wonder whether or not it’s socially acceptable to pry into the gory details and ask those questions that natural curiosity sparks. For those brave souls that do decide it is okay to ask away (or for those that just don’t have a conversational filter), I almost always, without fail, get the same three questions.

Question 1: So is his new heart a baby heart? I mean, it had to fit in his chest, right?

This question stabs me with a new pang of guilt each time it’s asked. “Yes. It was a baby’s heart.” Then the knife twists when I see the realization on their face that the “yes” I just gave them means that the donor baby is gone. Cue another awkward pause, and bring on the waves of oppressive guilt. After the first question is asked and the proverbial ice is broken, the flood gates open.

Question 2: Will the heart grow with him, or will he keep having to get new hearts as he grows?

Another devastating blow, and another reminder that his ordeal may not be over. “Yes, his heart will grow with him. But our transplant team says it’s not an ‘if’ but a ‘when’ his body rejects his heart, so he’ll probably need another transplant at some point in time.” Another dawning of realization that more people would need to die in order to donate those hearts that he may eventually need. More guilt. More awkward pauses. And then comes the doozy.

Question 3: Do you know anything about the donor family or how the kid died?

This question almost brings me to my knees every time. I know it’s not meant to be callous, but it feels so heartless. It’s almost as though so long as you’re far enough removed from the situation, you don’t have to think about how inappropriate it is to ask about it because it doesn’t hurt you. But again, it’s a natural curiosity, and I in no way blame them or fault them for it. But this is where I simply shake my head no and do whatever I can to steer the conversation in any other direction before I sob hysterically. No, I have no idea what horrible tragedy befell that amazing family. I know nothing of the emptiness and sorrow they must endure every day. I can’t fathom how it must feel coming home to the place where their infant once lived, being amongst the clothes and toys that may never be worn or played with again. I can only imagine the heartache and empathize with the grief they must be experiencing.

Now, my immediate family members have had vastly different responses. My dad says people generally avoid discussing it with him altogether. When people asked my dad how Mr. Snuggles was doing in the ICU prior to his receiving his heart, if he didn’t have good news, they pretty well fled for the hills. It’s extremely uncomfortable and difficult to speak with someone about health related issues, especially when those issues are life-threatening and treatment isn’t going well. I understand that. But if you can’t handle the answer, perhaps you shouldn’t be asking the question. If you feel that uncomfortable receiving the response, imagine how painful it is to have to give that response and be constantly reminded of the situation.

On the other end of the spectrum, my husband says the people he talks to tend to focus on our son in a more positive light. They appropriately ask how he’s doing and what the next steps are, or they focus on his future. This discussion can be extremely helpful, because sometimes it’s easy to get caught up in daily struggles, and these conversations can be a nice reminder that the worst is behind us and vast possibilities lie ahead.

With all of that being said, if you wish to talk to someone who has been involved in organ transplantation first hand, either as a direct recipient or as their friends and family, I implore that you really analyze the entire situation before you ask those prying questions. How strong is your relationship with this person? What is their body language when the subject is broached? Some people are far more open than I am. Some people share every intimate detail freely and openly. And that is awesome. I admire the strength of those people. But for those like me that don’t handle sharing that information very well, these questions can cause a great deal of stress and emotional upheaval. Be patient with them if this shows, because coping with these situations can be very challenging.

And please be very aware of how you phrase your questions. I HATE the phrase “the kid” when people talk about our donor. That angel wasn’t just “some kid.” He or she was someone’s entire world; someone’s pride and joy and source of happiness. He or she is a hero and a saint. Please keep this in mind when discussing someone’s donor with them.

It is absolutely okay to ask questions. Honestly, I expect people to ask questions; organ donation is not something you come across every day, and curiosity is natural. Just please, I beg you, be cognizant as to how and when you approach people who have already been through so much.

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As for my fellow organ recipient parents, I’d love to know how you all cope. How do you handle these conversations? Do they ever get easier? What challenges do you face raising a child with a transplant?

For those readers who have received organ transplants themselves, I have the same questions, and I also seek your point of view on how I’ll tell my son about his early life experiences.

How do we overcome those unique obstacles?

I think it’s time we open up some channels for discussion on these topics.

I think it’s time we talk about Fight Club.

If you’re interested in talking and you have any advice whatsoever for any age, under any related condition (CHD, transplant, parent’s perspective, recipient’s perspective, living donor’s perspective, etc.), or if you simply want someone to talk to, please feel free to email me: letstalkaboutmiracles@gmail.com

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