Signals From Space published a fantastic article, written by our very own @Karin, about reasons why innovation in transplant lags behind other specialty fields. I found myself nodding in agreement as I read along. What do you guys think?
When I read the headline, I didn't think that this could be such a big factor. After reading, I have to say I agree. Even as an advocate, I don't always voice complaints because I am so grateful for my second chance and I don't want to complain. I think it's time to shift that perspective into talking about these issues because making each gift last as long as possible is part of being grateful!
I think this idea that transplant recipients need to just be grateful is incredibly harmful. Not only, like Karin stated, in furthering the field from a medical standpoint, but in improving patient outcomes and allowing us to tell the real, raw stories of what is happening to our bodies. If you look past this "gift of life" it's actually incredibly traumatic to undergo such an ordeal, and yet we're told to just be grateful because at least we're still here.
My personal view is this shows up in transplant more than any other medical field because of the person to person exchange. There is this interdependence of patients that doesn't really exist in the same way in any other field of medicine. Of course that has to be handled with care, and the conversations we have need to include this piece, but it's a massive disservice when that's where the conversation stops. And my view is this is accepted more in transplant because of the donor conversation, and how we really can't separate the two.
it felt deeply personal. As a kidney transplant recipient, I live with immense gratitude for the gift of life, yet that gratitude doesn’t erase the guilt, fear, and ongoing health struggles that come with it. I often find myself in that same space the article describes feeling hesitant to speak up because I don’t want to seem ungrateful. But the truth is, being grateful and wanting better care can exist together. This article resonates because it puts words to what many of us feel that transplant patients deserve innovation, support, and a public voice just as much as any other group. Gratitude is powerful, but using that gratitude to fight for awareness and change is even more powerful.
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Every person on here deserves more and better!!!! Love this article and would love to hear how it resonates with others.
When I read the headline, I didn't think that this could be such a big factor. After reading, I have to say I agree. Even as an advocate, I don't always voice complaints because I am so grateful for my second chance and I don't want to complain. I think it's time to shift that perspective into talking about these issues because making each gift last as long as possible is part of being grateful!
Transplant Patient
I think this idea that transplant recipients need to just be grateful is incredibly harmful. Not only, like Karin stated, in furthering the field from a medical standpoint, but in improving patient outcomes and allowing us to tell the real, raw stories of what is happening to our bodies. If you look past this "gift of life" it's actually incredibly traumatic to undergo such an ordeal, and yet we're told to just be grateful because at least we're still here.
My personal view is this shows up in transplant more than any other medical field because of the person to person exchange. There is this interdependence of patients that doesn't really exist in the same way in any other field of medicine. Of course that has to be handled with care, and the conversations we have need to include this piece, but it's a massive disservice when that's where the conversation stops. And my view is this is accepted more in transplant because of the donor conversation, and how we really can't separate the two.
it felt deeply personal. As a kidney transplant recipient, I live with immense gratitude for the gift of life, yet that gratitude doesn’t erase the guilt, fear, and ongoing health struggles that come with it. I often find myself in that same space the article describes feeling hesitant to speak up because I don’t want to seem ungrateful. But the truth is, being grateful and wanting better care can exist together. This article resonates because it puts words to what many of us feel that transplant patients deserve innovation, support, and a public voice just as much as any other group. Gratitude is powerful, but using that gratitude to fight for awareness and change is even more powerful.