General
Global Community Perspectives
We just finished a global support group (If you haven't joined a call yet with @DannyH you're missing out) and the connection in the zoom room was so powerful. We chatted about how incredible it is to be able to be in a room full of strangers who live on the other side of the world and be able to feel seen and heard. Even in all of our differences, there's still so much common ground.
One thing we were chatting about that I'd love to bring to our broader community is our cultural/country's attitude towards transplant care and how the broader public views organ donation. Even in countries that seem to have a really positive relationship to transplantation, we've found there can still be so much stigma around what it means to be a transplant recipient and the lifelong effects.
I'm curious how where you live has shaped your view of transplant.
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Here in New Mexico, kidney transplants happen here. I have found everyone really supports transplant recipients, but the stigma is so real. People ask about my transplant (liver) but they just want one or two sentences about it till they want to move on!
Transplant Patient
I feel (at least here - I’m in western Canada) kidney transplants are very widely accepted, but everything else not so much. Not that I’ve ever had really bad reactions being a liver recipient but 90% of the support or advocacy or conversation is kidney. I’ve noticed that in the global conversations I’ve had too
@tia totally experiencing this “but they just want one or two sentences about it till they want to move on!” -
I appreciate that friends/clients ask how we are doing, but for god’s sake, we need some rest time.
There is one exception, a surprise visit in the hospital after surgery, which I was really grateful for!
Aside from the people here that have had transplants, I’m not in a hurry to respond to emails and answer phone calls, unless really necessary. I should find one of those ‘notify my friends and family’ apps - I take suggestions.
I get it though, most people, including my family, simply may not know how big of a surgery a transplant is and the lifestyle changes we require post transplant, i.e. don’t visit me at home, wear a mask if you are sick or are constantly coughing, wash your hands often if you cook for me, I’m diabetic now not forever (hopefully),…
End of rant 🙄
Going back to @AliEm14 original question. I never knew much about organ transplant before getting diagnosed. Based on my personal experience I learned a lot very quickly. I certainly don’t judge people overall, be it organ transplants, or anything else. Two, everyone’s process and experience is different. I was already primed, getting diagnosed 16 years ago with celiac sprue and vitiligo, one visible, the other an invisible autoimmune disorder, talk about stigmas.
-Andreas