Monday, November 28, 2011

survey: donor follow-up care

Hello, fellow donors!

We invite you to take a moment to participate in this survey. It was created out of a very real need for accurate data on the follow-up contact and care that does (and often does not) happen post-donation. The living kidney donor community has learned that UNOS (United Network for Organ Sharing) is trying to pass protocol (#9), that would make it mandatory for transplant centers to follow-up with their donors. However, once pressed for records of follow-up attempts, many centers have responded with the claim that donors do not wish to be contacted after their surgery for follow-up questioning and care.

In an effort to present sound proof and representative data to the transplant community to back up our sentiments that donors do typically want some form of follow-up, we decided to reach out to the donor community via this questionnaire. Your participation gives voice to this very important cause, and we thank you for speaking up on behalf of those donors who cannot do so themselves.

On behalf of the living kidney donor community at large, thank you for agreeing to take part in the survey.

To participate, please click on this link:

Thank you!


  1. What would be mandatory rules to follow UNOS


  2. Hi Ruby,
    Thank you for visiting my blog.

    What exactly do you mean? If you go to the link I provided and download their proposals you will see what their intent is. I encourage you to look over many of their proposals that are available for open comment.


  3. Who is behind this survey and what is the data being used for?

  4. Hi Cristy/Living Donor 101,

    I'm going to reply to your comment (see below) with the same response I did back on August 2, 2011, when you asked the same question. I feel perhaps that you might think we have some hidden agenda, and quite honestly we don't. The beauty of the internet has brought some like-minded donors together to share their experiences, is all this is, and we certainly have never claimed to be anything more. We also would like to remind you that participation in any survey over the world wide web is voluntary, if for any reason you are offended by the material, we would encourage you to disregard it.

    Again, here is my response to your question...

    We're nothing more than a group of living donors that have decided to put our heads together and attempt to collect some information on the experiences of others. We don't have a title and our purpose is to see if we might compile a common thread of issues that some donors have experienced that they might feel has room for improvement. Actually, our motivation is pretty similar to that of which is your focus on your blog.

    Thank you for your comment... Happy Holidays!