Transplant Trotters have cause to savor Hood to Coast

Here is another article that came as a result of Donate Life Northwest's "Hood to Coast" PR blitz. I can't say enough how HONORED I am to be part of the Transplant Trotter team! Running is a passion of mine. Promoting organ donation is a passion of mine. Having an opportunity to combine running and organ donor awareness is like GOLD to me.


I've talked to so many people about the risks of becoming a living organ donor - I love to tell people that I am an even more dedicated runner post donation. It's so fulfilling to let people know that you don't have to sacrifice your passions to donate an organ -in fact for me it was quite the opposite situation. The entire process helped me prioritize my life and put even more attention to running. Plus - I was able to meet the founder of Hood to Coast this summer and I treasure the stories we shared about the very first Hood to Coast races. Most people think about the Hood to Coast as some crazy running experience, but Bob tells of stories of people, ordinary people doing great things (like running 200 miles!) Isn't that really what life is all about?

Anyways - here is the story that highlights Hood to Coast 2011 and my organ donation story: Transplant Trotters have cause to savor Hood to Coast

Transplant Trotters

It's August again so that means I'm prepping for my 5th Hood to Coast Relay! This year I get to be part of the Transplant Trotter team again and I'm very excited. The entire team is made up of organ donors, recipients, family and friends. I'm still working on getting Anna to join the team. Maybe next year!

I was very honored yesterday when I was asked to do an interview with THE FOUNDER of Hood to Coast, Bob Foote. Bob is a two-time kidney recipient and is an amazing example of how you can lead a healthy active life post transplant. Here is the interview we did together on KOIN television. It was in front of a live audience so that was a little nerve racking, but still a lot of fun! Enjoy!



Here is the link for the video and story

This year our Transplant Trotter team consists of 4 Living Donors, 7 Kidney recipients, 3 Liver recipients, 3 family members of recipients & 3 friends of recipients ages 14-70. Should be an interesting journey once again this time around!!!

Moving forward...

Anna and I are now a year and a few months post kidney transplant. I’m often asked “how is Anna doing?” and it has come to my attention that I had a better answer to that question when she was in dialysis and awaiting a new kidney. The year that Anna’s kidneys shut down, I made it a priority to drive the three hours from Portland to Seattle to stay connected to Anna. We did little more those days than sip Chai Tea and talk; Anna often slept as she was in a great deal of pain. It wasn’t much, but I could tell you how she was holding up. But what about today? I simultaneously love and hate that I don’t really have a good answer to that question. You see, since the kidney transplant Anna has been healthy. She has been living her life, she has been out of the house and unconstrained by poor health. It’s a great problem to have. But unfortunately, I haven’t spent as much time with my best friend as I’d like.

 Anna and I did spend the weekend of our one-year transplant anniversary together. We had originally planned on having a girl’s weekend getaway somewhere fun and sunny but life got in the way and we opted for a weekend halfway between Portland and Seattle. Yep – there is a tiny little town tucked off of Interstate 5 called Chehalis. We stayed at the local McMenamin’s, shopped, watched movies, had pedicures, read tashy tabloids, played pool and caught up with one another. It rained the entire weekend (November in the Pacific Northwest after all), but we had a wonderful time – significantly less painful than the year before J 

 Since the surgery, I seem to be drawn to the notion of evangelizing organ donation. Just ask me one question about the process, and I’ll talk your ear off and then ask you if you are a registered organ donor. It’s my charity of choice (alongside food allergy awareness) that I promote over lunch, via twitter and even in Vegas nightclubs. I think my friends might be getting tired of it, but I feel like its something I should share. As such, I’m slated to volunteer for the local chapter of the Donate Life organization. This spring, I’ll be going into local area high schools to chat about organ donation.  As a PR professional, I find it amusing they won’t let me talk to the students until I go through presentation and messaging training. All those dozens of media training sessions and I’m still not trusted J

Looking back on this process, I am still humbled by the gracious gifts and words that friends, family and strangers offered to us. It's funny how this decision changed my entire outlook on life, but it was easily one of the most guttural decisions I’ve ever made. Yes, I would do it again in a heartbeat. Yes, even though it hurt (people always ask me if it hurt), yes it hurt worse than childbirth, but yes I’d do it again in a heartbeat. 

The fact this kidney transplant has given Anna more than a year of good health, makes me proud. Her body could easily reject this kidney next week but I would still not regret this decision. I get to see Anna next month at her cousin’s wedding in our hometown. The last time Anna and I hung out in our hometown was just weeks before her kidneys shut down, it seems almost like another lifetime. I’m looking forward to the wedding weekend, just as much as I am looking forward to sharing years of good health with my best friend. 

Another perspective

Decision to Donate is an inspiring video story of a kidney donation between two friends. Basically, the video is a lot like this blog but significantly less winded - I mean condensed. The movie runs about 15-minutes and is a lovely example of how wonderful and rewarding organ donation can be, for both the recipient and the donor.

"Decision to Donate tells the story of two men, one in need of a kidney transplant and the other willing to donate a kidney. The film explores this profound, life saving decision and the emotional experiences of the donor, the recipient and their families."

This particular kidney donation story touches a soft place in my heart because the kidney donation occurred at the same hospital as our surgery, Virginia Mason Hospital. Even my surgeon, Dr. Kozlowski, makes an short appearance in this video.

Somewhere near the middle point, the film shows footage from the day of surgery. As the film follows down the hospital corridor, I could feel myself there again; smelling that horrendously clean antibacterial scent and experiencing a confusing whirlwind of emotions twisting through happiness, loss, concern and pride. Watching John Backus up and walking post surgery made me clutch my side, even though I haven't felt pain there in months. That footage brought my surgery back in an instant. If you have the time, I suggest a viewing, then click on the registration link for organ donation if you feel inspired.

We are now seven-months post surgery and I'm happy to report that we are both doing well. I have no complaints, everything is as it should be. Anna is HEALTHY, her tests continue to show excellent results and she has resumed living a normal life again. What can I say? Life is good.

Singing in the Rain

April is National Donate Life Month and as such, the Living Legacy Foundation hosted it's fourth annual giving luncheon last week. Anna and I had the pleasure of attending the luncheon and were able to sit with a table full of Virginia Mason donors and recipients. I've communicated with these folks leading up to and through our kidney transplant processes via email but I had yet to meet anyone in person before last week's luncheon. I have to say everyone was so kind and delightful to meet.

The luncheon itself was wonderful, it was a very professional event and I think everyone had a lovely time. They even provided every table with Kleenex tissues due to the highly charged nature of the guest presenters. And let me tell you, those tissues were used! The luncheon is open to anyone interested in supporting organ donation - so I welcome all of you to consider attending next year.

The Spoon Theory

Over the years, I've read dozens of articles on Lupus and kidney failure. Most are technical in nature, technical to a point I have trouble understanding the medical jargon. Never before have I come across a really good article that explains Lupus from a personal perspective. This article came my way today thanks to friend. I had never read it before, but the author - Christine Miserandino - does an amazing job of describing the pain of living with Lupus. It's a great read if you have the time.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

"I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to the spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good of understanding Lupus, but anyone dealing with any disability or illness."

Changes to Organ Donation Process

Do you have a "D" on your driver's license? I'm sad to say, but I just had to check mine this morning, because although I thought I had signed up to be an organ donor back when I got my license years ago - I honestly couldn't remember. Up until this year, if you had selected this deisgnation on your license you probably assumed that your organs would and could be donated if certain critera were met. Most people think this is the case, I did as well. Even with this designation organ recovery agencies still required consent from family members - giving final decision to another party. And sadly, on many occasions organ donations were halted because of this policy. But thanks to some hard working folks at Donate Life Northwest, this is no longer the case! According to the new policies announced today, this burden has been removed from the family.

Here's a quick Q&A on the changes:

Q: What changed in the organ, eye and tissue donation process?
A: In the past, the family of a potential organ, eye or tissue donor made the final decision for donation regardless of a donor designation on the driver’s license. Now that burden on the family has been removed because the license designation has the same application as an online or paper registration.

Q: Why has this change been made?
A: This change was made to be consistent with national donation practices. It is in line with what most Oregonians already believe — the “D” designation signifies their final consent to be organ, eye and tissue donors.

Q: How did recent legislation play into the change?
A: During Oregon’s 2007 Legislative Session, lawmakers passed the revised Uniform Anatomical Gift Act (UAGA), which strengthened the existing UAGA law by aligning it with national trends.

Q: When will this change take affect?
A: The revised UAGA went into affect January 2008. Organ, eye and tissue recovery agencies will be making the necessary changes over the next several months.

Q: How do I sign up to be a donor?
A: There is one donor registry with three ways an individual can register to be a donor: 1) online at www.donatelifenw.org, 2) through a DMV-issued driver’s license/instruction permit/ID card, 3) filling out a paper form obtained by calling 1-800-452-1369.

Q: What does the “D” on my license mean?
A: The driver’s license is global consent, i.e. consent for recovery of all organs,
eyes and tissues for transplant or medical research. Those who do not have a
donor designation on their license and wish to be a donor can register online at
www.donatelifenw.org or call 1-800-452-1369 to request a paper form.
Individuals signing up through these methods are added to the same donor
registry as DMV registrants and can also provide global consent, as defined
above. Online registration and paper forms also allow an individual to specify
what they wish to donate and for what purposes.