Thursday, September 29, 2011

OPTN/UNOS policy proposal for public comment

UNOS/OPTN distributed electronically, September 16, 2011.

[ The proposed policies from the Living Donor Committee, and likely to be of more interest to living kidney donors: #8, #9, #10, #31, #42, #43 & #50. ]

This document contains fourteen policy proposals being offered for public comment. These proposals were developed by OPTN/UNOS committees. When the public comment period ends on December 23, 2011, each sponsoring committee will review the feedback they receive and consider modifications to the original proposals. The OPTN/UNOS Board of Directors may then review and vote on these proposals at its meeting on Juney 25-26, 2012.

We welcome your feedback on this policy proposal and other aspects of the public comment process as we continue to improve the way that we communicate with the community. Please note that all exhibits and appendices to these proposals can be found on the OPTN website via the link below. Please click on this link to provide your comments on these proposals.

You may also send general feedback to:

Please submit all comments no later than December 23, 2011. For questions about the proposal, please contact your Regional Administrator at (804) 782-4800.

Thank you in advance for your careful review and feed back on this proposal.

For information on OPTN: 

For information on UNOS: 

Thursday, September 22, 2011

one year. one kidney

Happy Anniversary, to me. A Starbucks skinny vanilla latte is helping me celebrate. Yum.

One year ago today, September 22, 2010, I donated my kidney to an unknown recipient.  I remember waking up from the anesthesia and whispering to my mother, "I'm so happy I did this." And I still am.

I would do it again tomorrow, but I can't. I recall going into surgery early that morning feeling remarkably calm as I laid down on the operating table. My last thought before being put under was how unfortunate it was that I was going to miss the moment that I had been anticipating for 6 months. Bam! It's over, and I have nothing to show for it, but my scar. It's a constant reminder, and a good one.  I think doc did a damn fine job.

September 20, 2010

October 31, 2010

September 22, 2011

My left kidney is now in the body of a beautiful 29-year old woman in Bakersfield, CA. And I wish I was there with it. Hello, sunshine!! Last I heard, she is doing fantastic. Her doctor has given her the go-ahead to have another baby, and she is thrilled to be working once again, going to school, and enjoying the wonderful life that for so long she had been stripped of.  I don't have much contact with her, but a warm text message pops up once every few months with an update on her health. You can't imagine how relieved I am when I hear of this good news. I still think about her every day.

I often get questioned about my health since that big day. (Physical, not mental, cuz they all know I'm a freak.) Friends still ask me how I'm feeling, and what changes I may have noticed since the donation. Honestly, I feel great. No pain, anywhere. As you can see from the crappy iPhone pics, my incision scar has healed beautifully and I am still shocked that they pulled anything larger than an M&M out of that. And there would be gobs of them... peanut, coconut, peanut butter...

There is one side effect from my surgery that has not diminished. Fatigue. Boo hoo. It's bad and it's not getting better. I hate to admit it, because outside of this one issue, I'm exactly the same person I was on September 21, 2010. The fatigue was expected early on in my recovery, and I was aware that I would have to work through it over time. Well, it's been a year now, and it's not any better than it was the day after my surgery. 

I am a very busy chick, and I do push myself, but I know my body and I know that I feel different now. I believe that fatigue is manageable. It's not pain, it's an inconvenience. I work through it, but it's hard as hell. Some days I feel like I could fall asleep standing up. Even when I'm in the middle of the most exciting and stimulating adventure with friends, I feel tired. All. The. Time. It never goes away and I am having a hard time tolerating it. But, I will. I do.

There are donors that have experienced this long-term fatigue, as I have been doing some research online to find suggestions as to how they cope with it. I know there are prospective donors that read my blog, and I mention all this because I think it's important to be honest in sharing my experience. I do want to be clear though that not all donors suffer from this particular side effect. I want to reiterate that every single donor has a unique experience - before, during and after surgery. Some donors have suggested that maybe I am still not healed and that the fatigue will slowly go away. That would be great and I am anxiously awaiting that possibility. 

The goal with my blog was to inspire and motivate just one individual to donate their kidney. That hasn't happened yet. However, I have met some amazing donors that I have had the pleasure of mentoring over this past year, and that's a huge achievement in my heart. I hope that I can continue to educate, inspire and be a friend to those that are beginning their donation journey. I know I had a wonderful mentor when I began mine and I want to continue to help others in the same way that Cara helped me.

I am so fortunate to have the ability to do what I did. I enjoyed the process, the research, the knowledge I  gained, and more than anything, I have enjoyed knowing that I have given new life to a woman, her husband, and her daughter.

For those interested in learning more about becoming a living kidney donor, please visit the following organizations online to get more information. Take the opportunity to have the most meaningful experience of your life - donate your kidney.

National Kidney Registry
• Living Kidney Donors Network
National Kidney Foundation
United Network for Organ Sharing

Until next time... It's getting cold in NY, I've released the wool and down comforter - hibernation has begun. Not happy.

Sunday, September 11, 2011

UNOS region 9 meeting

Living kidney donors, listen up!

UNOS (United Network for Organ Sharing) is holding a conference at which they will be forming transplantation and donation policies that could affect current and future donors - and they are doing so without the representation of the donor community.

We need your voice! Please help protect our rights by attending their Region 9 conference with us.

Wednesday, October 12th, 2011
189 Wolf Road, Albany, NY

If you are interested in joining forces with other living kidney donors who want to be heard, please send us an email:

I encourage you to get involved in UNOS through attending this upcoming regional meeting and participating in the policy making process.

Would love to have this opportunity to meet other living donors, and share our experiences!

See you there!