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Kidney transplant - The Journey from the Donor's Side
Transplants | Last Active: Apr 29, 2020 | Replies (357)Comment receiving replies
@rosemarya I think it gives some good information without being overwhelming. The living donor toolkit link at the bottom of the article gives potential donors a better idea of what is expected of them but the article is a good starting point.
It would be nice to see the differences between directed and altruistic donors in the same article or toolkit. The evaluation and surgery are the same but it seems like there are enough differences to compare them side by side. A timeline would also be nice.
I wish that I had been directed to Mayo Connect after my initial screening call with Mayo. I found it by accident and it would have helped quite a bit to hear from "real" people earlier on.
Replies to "@rosemarya I think it gives some good information without being overwhelming. The living donor toolkit link..."
Thanks so much @rosemarya for soliciting this feedback, and @mauraacro for your great comments. As Rosemary said, your feedback is especially appreciated given that you've been through the living donation process! @keggebraaten and I are already talking about how we can incorporate your ideas to develop some kind of timeline... and I definitely think we can provide more information (either in the toolkit or an upcoming blog post) on the difference between directed and altruistic donors.
I'm glad you found Connect too and am so sorry you didn't hear about it from our staff in the transplant center! We take any chance we can get to promote this site to our colleagues in practice, and provide materials about it for them to give patients. Unfortunately those materials don't make it into the hands of every patient that comes through. However, just this week we developed some additional collateral promoting Connect so we'll have another reason to reach out and remind them to spread the word!
@mauraacro - we took your feedback here and created a new blog post, a timeline or "countdown" of sorts leading up to living donor surgery. In the process of writing this, we learned that it's difficult to create a "true timeline" because each donor/recipient's situation is so different, and timelines are typically driven by the recipient's status. So while we were't able to create a concrete timeline, we hope this information can be helpful to someone out there. Thanks again for the idea! https://connect.mayoclinic.org/newsfeed-post/countdown-to-living-donor-surgery-key-steps/
Also, it's still in our plan to add more information about the difference between directed and altruistic donors. Great feedback!
@kequick That's so helpful!
My recipient and I really want to get the word out about living donation but we haven't figured out a good place to start besides talking to people. This gives great info and the links make it easy for someone to find the things a potential donor would need, all in one place.
The timeline link is something we can share on social media or text or email to people interested to give them more information if they have questions.
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@mauraacro, I think that you have expressed excellent ideas here!
Now, I have a request for you.
Would you add (you can even copy/paste) your comments to the Comment area of the article? https://connect.mayoclinic.org/newsfeed-post/what-to-expect-during-a-living-donor-evaluation/
I think that @kequick and the Mayo Transplant staff will be interested in hearing your view point. As a living donor, you provide a very unique point of view that is only possible thru the experience you have lived.
I know that the Mayo team is constantly looking for ways to improve patient education and care.
Thank you.
Rosemary