tag:blogger.com,1999:blog-34679253759159724632024-03-05T06:03:12.353-08:00Got Kidney?I have found that among its other benefits, giving liberates the soul of the giver. -- Maya AngelouNicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-3467925375915972463.post-67435238316155795002017-09-15T13:42:00.003-07:002017-09-15T13:53:43.013-07:00Selena Gomez Kidney Transplant<div class="separator" style="clear: both; text-align: center;">
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Earlier this week we learned that Selena Gomez received a kidney transplant this summer.<br />
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When I initially learned Selena had Lupus, just like Anna, she was added to my prayer list. I was hoping she would not face the ordeal Anna had to live through. Now we know, just like Anna - her Lupus attacked her kidneys as well. Amazingly, Selena's best friend, Francia Raisa<span style="color: #545454; font-family: "roboto" , "arial" , sans-serif; font-size: x-small;"><span style="background-color: white;">,</span></span> donated a kidney to her. Her story is so much like ours. I hope she get at least 10 years out of this selfless gift. Sending love and healing to both Selena and Francia today!<br />
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I also did my first national media interview because they were talking about Selena's transplant - take a watch!<br />
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<br />Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-82724667326631055022014-07-30T13:20:00.000-07:002014-07-30T13:20:05.685-07:00Transplant Games of America - Houston Ya'll!<div class="separator" style="clear: both; text-align: center;">
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July was a crazy busy month for me and my family. We (and by we I am also including Anna my kidney recipient because she IS family - even if we aren't related) all traveled down to Houston to participate in the Transplant Games of America.<br />
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It was a crazy fun five days and the memories I have brought home are nothing short of humbling. Because most of the events I participating in were running events, I wrote recaps on my Running Blog here. But here is an overview of each blog post:<br />
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<a href="http://threebuttercups.blogspot.com/2014/07/transplant-games-of-america-part-1.html" target="_blank">TGA Part 1: Registration and 5K Run</a></div>
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<a href="http://threebuttercups.blogspot.com/2014/07/transplant-games-part-2.html" target="_blank">TGA Part 2: 500M Swim and Opening Ceremonies</a></div>
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<a href="http://threebuttercups.blogspot.com/2014/07/transplant-games-part-3.html" target="_blank">TGA Part 3: 20K Cycle</a></div>
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<a href="http://threebuttercups.blogspot.com/2014/07/transplant-games-part-4.html" target="_blank">TGA Part 4: Track & Field Day and Closing Ceremonies </a></div>
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Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com5tag:blogger.com,1999:blog-3467925375915972463.post-4509089041950673172012-11-14T09:27:00.000-08:002012-11-14T09:27:01.415-08:00Donate Life NW's Annual Lifesaver's BreakfastIt just happens to be good timing that Donate Life NW's annual <a href="http://www.donatelifenw.org/content/lifesavers-breakfast" target="_blank">Lifesaver's Breakfast</a> always lands within days of my Transplantaversary. I attended my first Lifesaver's Breakfast five years ago, just a week before donation and I cried like a baby for the entirety of the event. I assumed it was my nerves making me so emotional, but again this morning every speaker evoked tears from yours truly. The MC was local news host <a href="http://www.koinlocal6.com/content/aboutkoin/kointeam/story/Sally-Showman/XYnoL-B2f0KeVJFrIbCScA.cspx" target="_blank">Sally Showman</a> had me crying five minutes into the event, followed by always touching words from Donate Life NW's Director<a href="http://www.donatelifenw.org/content/staff" target="_blank"> Mary Jane Hunt</a>. But the big crying spell came from the touching keynote presentation from Jennifer Browning.<br />
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It's important to remember that registering to be an organ donor doesn't only impact the person that could one day receive your organs - that simple act can impact dozens of people and in Jennifer's case - hundreds of people. She is <a href="http://pntb.org/who-we-are/meet-the-team/clinical-coordinators/jennifer-browning/" target="_blank">doing lifesaving work </a>everyday and making a difference for those facing organ donation in Oregon. Excellent presentation Jennifer - you are a stunning representative of the power of organ donation!<br />
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<br />Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com4tag:blogger.com,1999:blog-3467925375915972463.post-24622516240180457012012-11-09T06:43:00.000-08:002012-11-09T06:43:20.764-08:005 Year Transplant-aversary!!<br />
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<span style="font-size: small;">It's astounding to me to think that our kidney transplant was five years ago today!!! Five years feels like a very substantial milestone, although in the world of organ transplants we need to treat every day as a blessing and not think about the years or how long your body will continue to accept this organ. </span><br />
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<span style="font-size: small;">First a quick update - Anna and her "new" kidney are best friends and doing exceptionally well. She's healthy and has great kidney function. Her Lupus seems to be kept in check by her anti-rejection meds and as such things are going well. And me, well I'm the same as always, no issues! </span><br />
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<span style="font-size: small;">In order to commemorate our five-year transplantaversary, I found Anna the perfect commemorative gift and because it's from Tiffany's I had to get one for myself as well! Let's face it - nothing says "I love you/You are appreciated" quite like a blue Tiffany box! And who would have guessed that Tiffany sold necklaces in the shape of a kidney? </span><br />
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<span style="font-size: small;">Today I offer good health and lifelong friendship to my best friend - skål!!!!</span><br />
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<br />Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-3775737500525520742012-08-29T08:35:00.000-07:002012-08-29T08:35:15.337-07:00Making Organ Donation Fun!<div class="separator" style="clear: both; text-align: center;">
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It's summer in Oregon and that means another round of <a href="http://www.hoodtocoast.com/">Portland to Coast</a> fun for me! Portland to Coast is the walking side of the famous Hood to Coast Relay race that takes runners on an epic journey from Mt. Hood to Seaside Oregon. The Portland to Coast starts in downtown Portland and also finishes in Seaside Oregon. We have 12 walkers and walk all day and night until we finish only resting and eating for a few hours at a time before we jump out and race again. Once again I signed up to participate in the amazing event with an amazing group of people - all organ recipients, donors, or family members.
This particular team - The Transplant Trotters - has been on the course for a decade and half, such a spectacular opportunity for us to spread organ and tissue awareness! And spread awareness we did - we handed out stickers and bracelets to racers, volunteers, and anyone along the course. And you know what? Most people had a transplant story of their own - listening and talking to these folks is really why I love volunteering for <a href="http://www.donatelifenw.org/">Donate Life NW</a>. It's great to meet people and learn about their connection to organ donation. <br />
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This is my third year on the team and once again I was assigned to Van #2. As always my team rocked the course - we had to deliberately slow down in our final legs because we were coming in before the 2.5 hour window and did not want to be disqualified and kicked out of next year's event. But really, what do you expect when you have a walker on your team that just WON A GOLD MEDAL at the Transplant Games? You read that right, we had a gold member medalist for speed walking in Van #2! Talk about impressive!! Blake qualified for the Transplant Games by donating a kidney to his son. <a href="http://www.canbyherald.com/news/2012/August/03/Sports/canby.man.races.for.donations.that.last.a.lifetime/news.aspx">You can read about him here. </a><br />
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There were two parts of this year's Portland to Coast event that really stuck with me as a veteran of this event:<br />
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1. Our team captain Marie is a kidney recipient, receiving a transplant from her mother when she was only a teenager. Marie, although young, has been on the team since the very beginning and has been the only team member for all the year's the Transplant Trotters have been participating. This year, Marie learned she needed another kidney transplant. This time it was her brother that stepped up and saved her life. She received her new kidney in April. That means she is participating only a mere four months after her transplant! Talk about an amazing athlete! She truly inspired me and proves that with a little determination and hard work - transplant recipients are capable of amazing things!<br />
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2. This was an especially amazing Portland to Coast for me because MY kidney recipient joined us at the finish line this year. Of all the races I've run over my life, Anna hasn't been able to see me actually cross a finish line yet but this year she was there with her entire family and I have to say this was the most amazing year yet for me seeing them at that finish line. AND her father wants to join the team next year which would be really really really awesome!<br />
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As always, we did a little publicity for organ donation before the race - here are two pieces that came out on our team and our stories. Enjoy!<br />
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<a href="http://www.blogger.com/goog_784752433">A story on being an organ recipient </a><a href="http://www.blogger.com/goog_784752433">
</a><a href="http://www.katu.com/news/local/Organ-donors-recipients-raising-awareness-at-Hood-to-Coast-167096655.html?tab=video&c=y">A story on being an organ donor</a><br />
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<a href="https://vimeo.com/48121685">And secondly, a story on being an organ recipient </a>(this is one that I'm in) Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-83249579789250817522011-12-15T17:06:00.001-08:002011-12-15T17:19:57.932-08:00Transplant Trotters have cause to savor Hood to Coast<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk2afqqJzZf0RdS6Sg2wn_jGOgVU3GL5kDMY243CB5rqK0ia0r-QASgPGY5Gqu9KVKFRWWu-haejWqsi4oPpBzXMQaTrc7J9fdITGbSH8yDbyXTPymq-p_7cbOlhbjvyd5Rh51v2oiKfQ/s1600/320616_10150294033988608_576898607_7628764_3608366_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk2afqqJzZf0RdS6Sg2wn_jGOgVU3GL5kDMY243CB5rqK0ia0r-QASgPGY5Gqu9KVKFRWWu-haejWqsi4oPpBzXMQaTrc7J9fdITGbSH8yDbyXTPymq-p_7cbOlhbjvyd5Rh51v2oiKfQ/s320/320616_10150294033988608_576898607_7628764_3608366_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5686529708827457506" /></a><br />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. <br /><br /><br />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? <br /><br />Anyways - here is the story that highlights Hood to Coast 2011 and my organ donation story: <a href="http://www.seaside-sun.com/news/local_news/transplant-trotters-have-cause-to-savor-hood-to-coast/article_adf663fc-d02a-11e0-8a88-001cc4c002e0.html">Transplant Trotters have cause to savor Hood to Coast</a>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-79781359258728695152011-08-24T13:33:00.000-07:002011-08-24T13:43:21.734-07:00Transplant Trotters<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5xsnMTsxtpDmpp9szzLR9sLXnuNKBHrWvaSFdTuXQJI5GSXT0n-47xceDpfgbZongoUcO2PAKnsaYxjSRvb5q9Bc2lCpt6SSuLSr8ceSJK9dHT8EDYzlZT98Pwu2L6tIQo3REx4kfnyY/s1600/h2c.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5xsnMTsxtpDmpp9szzLR9sLXnuNKBHrWvaSFdTuXQJI5GSXT0n-47xceDpfgbZongoUcO2PAKnsaYxjSRvb5q9Bc2lCpt6SSuLSr8ceSJK9dHT8EDYzlZT98Pwu2L6tIQo3REx4kfnyY/s320/h2c.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5644525854858484210" /></a>
<br />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!
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<br />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!
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<br /><a href="http://www.koinstudio6.com/content/featured-on/story/Hood-To-Coast-Relay/s6J5UECiz0aTCPtjMa8_qg.cspx#.TlQv7JTbpDc.facebook ">
<br />Here is the link for the video and story</a>
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<br />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!!!Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-57688821864190376082009-01-24T22:07:00.000-08:002009-01-24T22:14:28.927-08:00Moving forward...<p class="MsoNormal">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 <st1:city><st1:place>Portland</st1:place></st1:city> to <st1:city><st1:place>Seattle</st1:place></st1:city> 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.</p> <p class="MsoNormal"><o:p> 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 <st1:city><st1:place>Portland</st1:place></st1:city> and <st1:city><st1:place>Seattle</st1:place></st1:city>. 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 <st1:place>Pacific Northwest</st1:place> after all), but we had a wonderful time – significantly less painful than the year before <span style="font-family:Wingdings;mso-ascii-font-family:"Times New Roman"; mso-hansi-font-family:"Times New Roman";mso-char-type:symbol;mso-symbol-font-family: Wingdings"><span style="mso-char-type:symbol;mso-symbol-font-family:Wingdings">J</span></span><span style="mso-spacerun:yes"> </span></o:p></p> <p class="MsoNormal"><o:p> 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 ch<st1:personname>ap</st1:personname>ter of the Donate Life organization. This spring, I’ll be going into local area high schools to chat about organ donation. <span style="mso-spacerun:yes"> </span>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 <span style="font-family: Wingdings;mso-ascii-font-family:"Times New Roman";mso-hansi-font-family:"Times New Roman"; mso-char-type:symbol;mso-symbol-font-family:Wingdings"><span style="mso-char-type: symbol;mso-symbol-font-family:Wingdings">J</span></span></o:p></p> <p class="MsoNormal"><o:p>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.<span style="mso-spacerun:yes"> </span></o:p></p> <p class="MsoNormal">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. <br /></p>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com8tag:blogger.com,1999:blog-3467925375915972463.post-26788756755267733142008-06-11T23:47:00.000-07:002008-12-09T18:43:36.580-08:00Another perspective<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh75qf5vCTMaejiLxi0Jv1PQ3vB_VXra-W2isyi4ktpgQauDlLA3rlgqDA8k6MvKrj9sYVnIh6xSwNINmntFN_8fTIfC_TOz4jzCpR7phPfwR8HcYD6h4C_H0nfb5u6oXQ8qm5GDoxHSQM/s1600-h/Decision+to+donate.bmp"><img id="BLOGGER_PHOTO_ID_5210891323915699362" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh75qf5vCTMaejiLxi0Jv1PQ3vB_VXra-W2isyi4ktpgQauDlLA3rlgqDA8k6MvKrj9sYVnIh6xSwNINmntFN_8fTIfC_TOz4jzCpR7phPfwR8HcYD6h4C_H0nfb5u6oXQ8qm5GDoxHSQM/s400/Decision+to+donate.bmp" border="0" /></a> <a href="http://www.decisiontodonate.com/">Decision to Donate </a>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.<br /><div><blockquote>"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."</blockquote></div><div>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.</div><div> </div><div>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. </div><div><br />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. </div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-62251980291602225702008-04-22T14:01:00.000-07:002008-12-09T18:43:37.502-08:00Singing in the Rain<div><div><div><div><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrwa4kx-1aUd-4lgE4iXlJE_8PVe5PcCi8URLaNMcgu8-eJEQ-cUfEFze1JVegvb9McIsDmszmC4QxCCClckMU-Iw-fyAz3qKLj0MhAsIo-7Ct01TP8MOMguNr9TFKcz727OZZliWQNCw/s1600-h/AGL_logo.gif"><img id="BLOGGER_PHOTO_ID_5192191024760260690" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrwa4kx-1aUd-4lgE4iXlJE_8PVe5PcCi8URLaNMcgu8-eJEQ-cUfEFze1JVegvb9McIsDmszmC4QxCCClckMU-Iw-fyAz3qKLj0MhAsIo-7Ct01TP8MOMguNr9TFKcz727OZZliWQNCw/s200/AGL_logo.gif" border="0" /></a></div><div>April is National Donate Life Month and as such, the <a href="http://www.lcnw.org/llfgivingluncheon/eventinfo.html">Living Legacy Foun</a><a href="http://www.lcnw.org/llfgivingluncheon/eventinfo.html">dat</a><a href="http://www.lcnw.org/llfgivingluncheon/eventinfo.html">ion</a> 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.<br /><br />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. </div><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3ES2r3z_Qb1S0MWJkkqg7Sm34wc9ikjMCPgbgL8dI9ahvtWsLIZMvX3G29XqyeO9yYVud6bwZmC-2ip7MUrriGx4h18DJzyShpbP9Yt4g3_LLk8sJLUFvEsSvTS0epFHfrVaZ6L8FU7c/s1600-h/luncheon-3.jpg"><img id="BLOGGER_PHOTO_ID_5192190840076666946" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3ES2r3z_Qb1S0MWJkkqg7Sm34wc9ikjMCPgbgL8dI9ahvtWsLIZMvX3G29XqyeO9yYVud6bwZmC-2ip7MUrriGx4h18DJzyShpbP9Yt4g3_LLk8sJLUFvEsSvTS0epFHfrVaZ6L8FU7c/s200/luncheon-3.jpg" border="0" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoRfOSON_gSMEAckEZa8mBGTZduXhyMmVEcCi_Qp8Ynj8S4dS1hTL2dt9m48zl9zIeFYPbR76WeeB0nqONNDlnmM_WBHTTDH1ZCZSvb8b5Ius6TsN4LZJYV10ypkhuK0UQlbcKBtb7Iqg/s1600-h/luncheon-1.jpg"><img id="BLOGGER_PHOTO_ID_5192190221601376274" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoRfOSON_gSMEAckEZa8mBGTZduXhyMmVEcCi_Qp8Ynj8S4dS1hTL2dt9m48zl9zIeFYPbR76WeeB0nqONNDlnmM_WBHTTDH1ZCZSvb8b5Ius6TsN4LZJYV10ypkhuK0UQlbcKBtb7Iqg/s200/luncheon-1.jpg" border="0" /></a><img id="BLOGGER_PHOTO_ID_5192190646803138610" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5gcvo5PpcCKP3643dGHJA_4Im9IXKpu-I6iLwCkfSsvUHE-csJbZALzDSQd1blnSEmelrIo6s8yJWh4J8sH0ajasfuIZlV3adaW2MIRLbyFspTRhnH9zYjXuvqe7bkMRVQUaQHDoZHyI/s200/luncheon-2.jpg" border="0" /></div></div></div></div></div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-47680185462074467362008-04-08T18:34:00.000-07:002008-12-09T18:43:37.780-08:00The Spoon Theory<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe8G8cB-Fq4xc4sMUCR0BXxyIz2iBnkEawWo2qXjCg_efIG39sr0aP4x7xXZiJ3dgDE7ztIoXVEBybLKYxyeTyRAb9el7EFacpjsGfJWY6KSJu8rkfJAuoZ0wxRPhdi2_Bm2LheXCUglo/s1600-h/spoons.jpg"><img id="BLOGGER_PHOTO_ID_5187054180439724738" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe8G8cB-Fq4xc4sMUCR0BXxyIz2iBnkEawWo2qXjCg_efIG39sr0aP4x7xXZiJ3dgDE7ztIoXVEBybLKYxyeTyRAb9el7EFacpjsGfJWY6KSJu8rkfJAuoZ0wxRPhdi2_Bm2LheXCUglo/s200/spoons.jpg" border="0" /></a> 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.<br /><br /><a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf" target="_blank">http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf</a><br /><br /><div><blockquote><br />"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." </blockquote></div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com0tag:blogger.com,1999:blog-3467925375915972463.post-22523751345935506632008-04-02T20:15:00.000-07:002008-12-09T18:43:37.915-08:00Changes to Organ Donation Process<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuZGhwOC_PpCxS6vPnGPEqdZLdlSr2A1XwBmkPotRM7qQjpu3bRcv3eUtrVK4CA9yoC7JE6eIEf7bM8o9Z-plfdTMdQPYZN4libcZp-2-XfxN_H4oe6aMZkTWLonX_vUDZEtoe6km0jrQ/s1600-h/Donate+LIfe+Northwest.jpg"><img id="BLOGGER_PHOTO_ID_5184672603894223522" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" height="131" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuZGhwOC_PpCxS6vPnGPEqdZLdlSr2A1XwBmkPotRM7qQjpu3bRcv3eUtrVK4CA9yoC7JE6eIEf7bM8o9Z-plfdTMdQPYZN4libcZp-2-XfxN_H4oe6aMZkTWLonX_vUDZEtoe6km0jrQ/s200/Donate+LIfe+Northwest.jpg" width="105" border="0" /></a> 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 <em>thought </em>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 <a href="http://www.donatelifenw.org/">Donate Life Northwest</a>, this is no longer the case! According to the new policies announced today, this burden has been removed from the family.<br /><br /><div>Here's a quick Q&A on the changes:</div><div><br /><strong>Q: What changed in the organ, eye and tissue donation process?<br /></strong>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.</div><div><br /><strong>Q: Why has this change been made?</strong><br />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.<br /><br /><strong>Q: How did recent legislation play into the change?</strong><br />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.</div><div><br /><strong>Q: When will this change take affect?<br /></strong>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.</div><div><br /><strong>Q: How do I sign up to be a donor</strong>?<br />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.</div><div><br /><strong>Q: What does the “D” on my license mean?</strong><br />A: The driver’s license is global consent, i.e. consent for recovery of all organs,<br />eyes and tissues for transplant or medical research. Those who do not have a<br />donor designation on their license and wish to be a donor can register online at<br />www.donatelifenw.org or call 1-800-452-1369 to request a paper form.<br />Individuals signing up through these methods are added to the same donor<br />registry as DMV registrants and can also provide global consent, as defined<br />above. Online registration and paper forms also allow an individual to specify<br />what they wish to donate and for what purposes.</div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-6757018026074643532008-03-30T07:35:00.000-07:002008-12-09T18:43:38.114-08:00Cellular Memory<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJSjn-uL6NhgqqwnRnHsGRT0dGkcjH2SRouH5jfTy7zCllv9K_cQnhdngVRRjkCGTkkHWPHkadqOuNAOjMHEdH-Ta79OAxS4pC6OdblOiACSxSk4UdrkNldntms3ect6XMKLs24J80YtQ/s1600-h/cellular_healing1.jpg"><img id="BLOGGER_PHOTO_ID_5183547459901624962" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJSjn-uL6NhgqqwnRnHsGRT0dGkcjH2SRouH5jfTy7zCllv9K_cQnhdngVRRjkCGTkkHWPHkadqOuNAOjMHEdH-Ta79OAxS4pC6OdblOiACSxSk4UdrkNldntms3ect6XMKLs24J80YtQ/s320/cellular_healing1.jpg" border="0" /></a>We’ve all experienced Déjà Vu at some point in our lives, I’ve heard a lot of explanations for it over the years. Even the movie The Matrix, positioned a theory about why we experience this feeling of “been there, done that.” There are scientific theories and there are mystical explanations, but at the end of the day nobody really knows what it is, but most people agree it happens and have first-hand experiences to relay to others.<br /><br />There is another similar, but far less known phenomenon, called Cellular Memory. The reason people don’t know about it as they do Déjà Vu, is because a much smaller subset of people have the right factors in place to feel it. Cellular memory is said to occur when a person has an organ transplant, it is the idea of adapting traits, memories, preferences compulsions, and habits of your organ donor. Although a vast majority of the public has never experienced cellular memory, the idea is not a new one – at least in Hollywood. Over the years there have been several movies made to fit into this theme. There have been touching ones like the James Caan/Billy Dee Williams flick, <a href="http://www.imdb.com/title/tt0068315">Brian’s Song </a>and there are the slasher films like <a href="http://www.imdb.com/title/tt0101492/">Body Parts</a> and to a lesser degree this year’s Jessica Alba movie <a href="http://www.imdb.com/title/tt0406759/">The Eye</a>.<br /><br />When the organ is placed in the recipient, the information and energy stored in the organ is passed on to the recipient. The theory applies to any organ that has cells that are interconnected. They could be heart, lungs, kidneys, liver and even muscles.<br /><br />Late one February night, I was watching an interview with a kidney recipient. He received his gift of life when a young teenager died in a car accident. The recipient never met his organ donor nor had he had the opportunity to meet with his donor’s family. The interview primarily focused on how the recipient’s life had changed since his surgery. He described new hobbies he liked to experience and new foods he now craved that he never had interest in before. As it turned out, the donor’s family had been contacted and they shared some of the background of the young man that served as the kidney donor. His favorite hobby and favorite foods matched the recipient’s new desires. I have no idea if any of this was staged for dramatic impact, but it did make me start to think about Anna and I began wondering if she would pick up anything new from me?<br /><br />The next time I talked with her I told her about the interview and asked if she had any new food cravings or interests. She dismissed my line of questions pretty quickly. She couldn’t think of any examples that would be interesting to my cellular memory study. Disappointed, I let the conversation go, but I continued to daydream about my best case scenarios on how cellular memory could impact Anna’s life. Perhaps she would be compelled to vote Democratic for the first time in her life? Perhaps she would start craving the limelight and start kareoking at Friday nights? Maybe she’d get an instant desire to hit the highway, get her license and drive to Portland to visit me?<br /><br />There are always skeptics that try to disprove theories and things that interest me. Cellular memory is no different. There have been plenty of theorists and scientists that believe cellular memory is nothing more than a reaction to drugs, pure coincidence and/or the power of suggestion. This could likely be true, but it isn’t very much fun in my opinion. There are several authorities though that do support the idea of cellular memory:<br /><br /><blockquote>"It's highly controversial, but I don't exclude it completely," said Dr. Jack G.<br />Copeland, UMC's chief of cardiothoracic surgery and head of the heart team that<br />has performed more than 700 transplants in 25 years. "With any solid organ, you<br />are transferring DNA from the donor to the recipient," he said. "These are genes<br />that relate not only to the specific organ, but to other systems as well, such<br />as cerebral function. So there may be something to this thing that personalities<br />can change."</blockquote>I found this site that lists out 10 very different and very interesting cellular memory scenarios. <a href="http://www.nexusmagazine.com/articles/CellularMemories.html" target="_blank">http://www.nexusmagazine.com/articles/CellularMemories.html</a> Some stories even made me want to cry.<br /><br /><blockquote><p><em><strong>Edited to include content as link is no longer active:</strong></em><br />To protect the privacy of the donors' families, recipients and their<br />families, physicians and hospitals, donors and recipients are referred to by<br />number, except when their first names were mentioned by family members or<br />friends in the transcripts. All recipients and family members or friends of the<br />donors were interviewed by Pearsall and audiotaped. The transcripts were<br />examined by Schwartz and Russek and selected for inclusion in this report.Each<br />of the 10 cases includes a donor family member's report (or equivalent), a<br />recipient's report (or equivalent) and a recipient family member's or friend's<br />report. Donor family members, recipients and recipient family members or friends<br />are quoted directly from the transcripts. Personal opinions (including<br />controversial content) are reported verbatim. Each case includes two to five<br />sample parallels between the donors and changes observed in the recipients post<br />transplant surgery. </p><p><br />Case 1 The donor was an 18-year-old boy killed in an automobile accident. The recipient was an 18-year-old girl diagnosed with endocarditis and subsequent heart failure.The donor's father, a psychiatrist, said: "My son always wrote poetry. We had waited more than a year to clean out his room after he died. We found a book of poems he had never shown us, and we've never told anyone about them. One of them has left us shaken emotionally and spiritually. It spoke of his seeing his own sudden death. He was a musician, too, and we found a song he titled "Danny, My Heart Is Yours"—the words about how my son felt he was destined to die and give his heart to someone. He had decided to donate his organs when he was 12 years old. We thought it was quite strong, but we thought they were talking about it in school. When we met his recipient, we were so...we didn't know, like, what it was. We don't know now. We<br />just don't know."</p><p>The recipient reported:"When they showed me pictures of their son, I knew him directly. I would have picked him out anywhere. He's in me. I know he is in me and he is in love with me. He was always my lover, maybe in another time somewhere. How could he know years before he died that he would die and give his heart to me? How would he know my name is Danny? And then, when they played me some of his music, I could finish the phrases of his songs. I could never play before, but after my transplant I began to love music. I felt it in my heart. My heart had to play it. I told my mom I wanted to take guitar lessons—the same instrument Paul [the donor] had played. His song is in me. I feel it a lot at night and it's like Paul is serenading me."<br /></p><p>The recipient's father reported:"My daughter, she was what you say....a hell-raiser. Until she got sick—they say from a dentist, they think—she was the wild one. Then she became quite quiet. I think it was her illness, but she said she felt more energy, not less. She said she wanted to play an instrument and she wanted to sing. When she wrote her first song, she sang about her new heart as her lover's heart. She said her lover had come to save her life."<br /></p><p>Case 2The donor was a 16-month-old boy who drowned in a bathtub. The recipient was a seven-month-old boy diagnosed with tetralogy of Fallot (a hole in the ventricular septum with displacement of the aorta, pulmonary stenosis and thickening of the right ventricle).The donor's mother, a physician, noted:"The first thing is that I could more than hear Jerry's [donor's] heart. I could feel it in me. When Carter [the recipient] first saw me, he ran to me and pushed his nose against me and rubbed and rubbed it. It was just exactly what we did with Jerry. Jerry and<br />Carter's heart is five years old now, but Carter's eyes were Jerry's eyes. When<br />he hugged me, I could feel my son. I mean I could feel him, not just symbolically. He was there. I felt his energy."I'm a doctor. I'm trained to be a keen observer and have always been a natural-born sceptic. But this was real. I know people will say that I need to believe my son's spirit is alive, and perhaps I do. But I felt it. My husband and my father felt it. And I swear to you, and you can ask my mother, Carter said the same baby-talk words that Jerry said. Carter is six, but he was talking Jerry's baby talk and playing with my nose just like Jerry did."We stayed with the ... [recipient family] that night. In the middle of the night, Carter came in and asked to sleep with my husband and me. He cuddled up between us exactly like Jerry did, and we began to cry. Carter told us not to cry because Jerry said everything was okay. My husband and I, our parents and those who really knew Jerry have no doubt. Our son's heart<br />contains much of our son and beats in Carter's chest. On some level, our son is still alive."The recipient's mother reported:"I saw Carter go to her [donor's mother]. He never does that. He is very, very shy, but he went to her just like he used to run to me when he was a baby. When he whispered 'It's okay, mama', I broke down. He called her 'Mother', or maybe it was Jerry's heart talking. And one more thing that got to us. We found out talking to Jerry's mom that Jerry had mild cerebral palsy mostly on his left side. Carter has stiffness and some shaking on that same side. He never did as a baby and it only showed up after the transplant. The doctors say it's probably something to do with his medical condition, but I really think there's more to it."One more thing I'd like to know about. When we went to church together, Carter had never met Jerry's father. We came late and Jerry's dad was sitting with a group of people in the middle of the congregation. Carter let go of my hand and ran right to that man. He climbed on his lap, hugged him and said 'Daddy'. We were<br />flabbergasted. How could he have known him? Why did he call him dad? He never<br />did things like that. He would never let go of my hand in church and never run<br />to a stranger. When I asked him why he did it, he said he didn't. He said Jerry<br />did and he went with him."<br /></p><p>Case 3The donor was a 24-year-old woman who was the victim of an automobile accident. The recipient was a 25-year-old male graduate student suffering from cystic fibrosis who received a heart-lung transplant.The donor's sister reported:"My sister was a very sensual person. Her one love was painting. She was on her way to her first solo showing at a tiny art shop when a drunk ploughed into her. It's a lesbian art store that supports gay artists. My sister was not really very 'out' about it, but she was gay. She said her landscape paintings were really representations of the mother or woman figure. She would look at a naked woman model and paint a landscape from that! Can you imagine? She was gifted."<br />The recipient reported:"I never told anyone at first, but I thought having a woman's heart would make me gay. Since my surgery, I've been hornier than ever and women just seem to look even more erotic and sensual, so I thought I might have gotten internal transsexual surgery. My doctor told me it was just my new energy and lease on life that made me feel that way, but I'm different. I know I'm different. I make love like I know exactly how the woman's body feels and responds—almost as if it is my body. I have the same body, but I still think I've got a woman's way of thinking about sex now."<br /></p><p>The recipient's girlfriend said:"He's a much better lover now. Of course, he was weaker before, but it's not that. He's like, I mean, he just knows my body as well as I do. He wants to cuddle, hold and take a lot of time. Before he was a good lover, but not like this. It's just different. He wants to hug all the time and go shopping. My God, he never wanted to shop! And you know what, he carries a purse now. His purse! He slings it over his shoulder and calls it his bag, but it's a purse. He hates it when I say that, but going to the mall with him is like going with one of the girls. And one more thing, he loves to go to museums. He would never, absolutely never, do that. Now he would go every week. Sometimes he stands for minutes and looks at a painting without talking. He loves landscapes and just stares. Sometimes I just leave him there and come back later."</p><p>Case 4The donor was a 17-year-old black male student victim of a drive-by shooting. The recipient was a 47-year-old white male foundry worker diagnosed with aortic stenosis.The donor's mother reported:"Our son was walking to violin class when he was hit. Nobody knows where the bullet came from, but it just hit him and he fell. He died right there on the street, hugging his violin case. He loved music and his teachers said he had a real thing for it. He would listen to music and play along with it. I think he would have been at Carnegie Hall some day, but the other kids always made fun of the music he liked."<br /></p><p>The recipient reported:"I'm real sad and all for the guy who died and gave me his heart, but I really have trouble with the fact that he was black. I'm not a racist, mind you, not at all. Most of [my] friends at the plant are black guys. But the idea that there is a black heart in a white body seems really...well, I don't know. I told my wife that I thought my penis might grow to a black man's size. They say black men have larger penises, but I don't know for sure. After we have sex, I sometimes feel guilty because a black man made love to my wife, but I don't really think that seriously. "I can tell you one thing, though. I used to hate classical music, but now I love it. So I know it's not my new heart, because a black guy from the 'hood wouldn't be into that. Now it calms my heart. I play it all the time. I more than like it. I didn't tell any of the guys on the line that I have a black heart, but I think about it a lot." The recipient's wife reported:"He was more than concerned about the idea when he heard it was a black man's heart. He actually asked me if he could ask the doctor for a white heart when one came up. He's no Archie Bunker, but he's close to it. And he would kill me if he knew I told you this, but for the first time he's invited his black friends over from work. It's like he doesn't see their colour any more, even though he still talks about it sometimes. He seems more comfortable and at ease with these black guys, but he's not aware of it. "And one more thing I should say. He's driving me nuts with the classical music. He doesn't know the name of one song and never, never listened to it<br />before. Now, he sits for hours and listens to it. He even whistles classical music songs that he could never know. How does he know them? You'd think he'd like rap music or something because of his black heart."<br /></p><p>Case 5The donor was a 19-year-old woman killed in an automobile accident. The recipient was a 29-year-old woman diagnosed with cardiomyopathy secondary to endocarditis.The donor's mother reported:"My Sara was the most loving girl. She owned and operated her own health food restaurant and scolded me constantly about not being a vegetarian. She was a great kid. Wild, but great. She was into the free-love thing and had a different man in her life every few months. She was man crazy when she was a little girl and it never stopped. She was able to write some notes to me when she was dying. She was so out of it, but she kept saying how she could feel the impact of the car hitting them. She said she could feel it going through her body."<br />The recipient reported:"You can tell people about this if you want to, but it will make you sound crazy. When I got my new heart, two things happened to me. First, almost every night, and still sometimes now, I actually feel the accident my donor had. I can feel the impact in my chest. It slams into me, but my doctor said everything looks fine. Also, I hate meat now. I can't stand it. I was McDonald's biggest money-maker, and now meat makes me throw up. Actually, when I even smell it, my heart starts to race. But that's not the big deal. My doctor said that's just due to my medicines. "I couldn't tell him, but what really bothers me is that I'm engaged to be married now. He's a great guy and we love each other. The sex is terrific. The problem is, I'm<br />gay. At least, I thought I was. After my transplant, I'm not...I don't think, anyway...I'm sort of semi- or confused gay. Women still seem attractive to me, but my boyfriend turns me on; women don't. I have absolutely no desire to be with a woman. I think I got a gender transplant." The recipient's brother reported:"Susie's straight now. I mean it seriously. She was gay and now her new heart made her straight. She threw out all her books and stuff about gay politics and never talks about it any more. She was really militant about it before. She holds hands and cuddles with Steven just like my girlfriend does with me. She talks girl-talk with my girlfriend, where before she would be lecturing about the evils of sexist men. And my sister, the queen of the Big Mac, hates meat. She won't even have it in the house."<br /></p><p>Case 6The donor was a 14-year-old girl injured in a gymnastics accident. The recipient was a 47-year-old man diagnosed with benign myxoma and cardiomyopathy.The donor's mother reported:"Look at her [shows photograph]. My daughter was the picture of health. There wasn't an ounce of fat on her. She was a gymnast and her coach could lift her above his head with one hand. She was so excited about life that she would just hop and jump all the time like a kitten. She had some trouble with food, though. She would skip meals, and for a while she was purging. I think they would call her a little anorexic. We took her to therapy about it,<br />but she just wasn't much into food. And she had this silly little giggle when<br />she got embarrassed. It sounded like a little bird." The recipient reported:"I feel new again. I feel like a teenager. I actually feel giddy. I know it's just the energy of the new heart, but I really feel younger in every way, not just physically. I see the world that way. I'm really young at heart. I have this annoying tendency to giggle that drives my wife nuts. And there's something about food. I don't know what it is. I get hungry, but after I eat I often feel nauseated and that it would help if I could throw up."The recipient's brother reported:"Gus is a teenager. No doubt about that. He's a kid or at least he thinks he's a kid. Even when we're bowling, he yells and jumps<br />around like a fool. He's got this weird laugh now. It's a girl's laugh and we tell him that. He doesn't care. His appetite never did bounce back after the surgery. He's pretty much nauseated almost all the time. After Thanksgiving dinner—and he loved it—he went upstairs and vomited. We took him to the emergency room, but it wasn't anything to do with his new heart. They said it was probably a reaction to something in the meal. None of the rest of the family got sick, though. He's going to have to watch it. His doctor is concerned about his weight."<br /></p><p>Case 7 The donor was a three-year-old girl who drowned in the family pool. The recipient was a nine-year-old boy diagnosed with myocarditis and septal defect.The recipient's mother said:"He [the recipient] doesn't know who his donor was or how she died. We do. She drowned at her mother's boyfriend's house. Her mother and her boyfriend left her with a teenage babysitter who was on the phone when it happened. I never met her father, but the mother said they had a very ugly divorce and that the father never saw his daughter. She said she worked a lot of hours and wished she had spent more time with her. I think she feels pretty guilty about it all...you know, the both of them sort of not appreciating their daughter until it was too late." The recipient, who claimed not to know who the donor was, reported:"I talk to her<br />sometimes. I can feel her in there. She seems very sad. She is very afraid. I tell her it's okay, but she is very afraid. She says she wishes that parents wouldn't throw away their children. I don't know why she would say that." The recipient's mother said about the recipient:"Well, the one thing I notice most is that Jimmy is now deathly afraid of the water. He loved it before. We live on a lake and he won't go out in the backyard. He keeps closing and locking the back door. He says he's afraid of the water and doesn't know why. He won't talk about it."<br /></p><p>Case 8The donor was a 19-year-old woman who had suffered a broken neck in dance class. The recipient was a 19-year-old woman diagnosed with cardiomyopathy.The donor's mother reported:"We've met Angela [the recipient], and she is the image of our daughter [Stacy]. They could almost be twins. They're both bright girls; I mean, my daughter was bright, too. She wanted to be an actress, but we thought she had too much academic potential for that. Her father is a doctor and really wanted her to follow in his footsteps." The donor's father reported:"Stacy was extremely bright. It's so tragic. She would have made an outstanding physician, but she wanted to dance and sing. That's how she died. She fell in dance class. We always argued good-naturedly about how disappointed I would be if she went to Hollywood instead of Harvard. I hope she knew I just wanted her to be happy."The recipient reported:"I think of her as my sister. I think we must have been sisters in a former life. I only know my donor was a girl my age, but it's more that that. I talk to her at night or when I'm sad. I feel her answering me. I can feel it in my chest. I put my left hand<br />there and press it with my right. It's like I can connect with her. Sometimes she seems sad. I think she wanted to be a nurse or something, but other times it's like she wanted to be on Broadway. I think she wanted to be on Broadway more. I want to be a nurse, but I could be a doctor too. I hope she will be happy, because she will always be my angel, my sister in my chest. I carry my angel with me everywhere."<br />The recipient's mother reported:"We can sometimes hear her talking to her heart. It's like a 'Dear diary' thing. She puts her hand on her chest and talks to who she thinks her donor is. Once we found her holding a stethoscope to her chest to try to hear her new heart. I think she still does that sometimes. And the only other thing is that she really wants to go to medical school now. She never wanted to do that before, but that's because I don't think she thought she would live. She's already changed her college classes."<br /></p><p>Case 9The donor was a three-year-old boy who fell from an apartment window. The recipient was a five-year-old boy with septal defect and cardiomyopathy.The donor's mother reported:"It was uncanny. When I met the family and Daryl [the recipient] at the transplant meeting, I broke into tears. Then we went up to the giving tree where you hand a token symbolising your donor. I was already crying when my husband told me to look at the table we were passing. It was the donor family with Daryl sitting there. I knew it right away. Daryl smiled at me exactly like Timmy [the donor] did. After we talked for hours with Daryl's parents, we were comforted. It somehow just didn't seem strange at all after a while. When we heard that Daryl had made up the name Timmy and got his age right, we began to cry. But they were tears of relief because we knew that Timmy's spirit was alive."<br /></p><p>The recipient reported:"I gave the boy a name. He's younger than me and I call him 'Timmy'. He's just a little kid. He's a little brother like about half my age. He got hurt bad when he fell down. He likes Power Rangers a lot, I think, just like I used to. I don't like them anymore, though. I like Tim Allen on Tool Time, so I called him Tim. I wonder where my old heart went, too. I sort of miss it. It was broken, but it took care of me for a while."The recipient's father reported:"Daryl never knew the name of his donor or his age. We didn't know either until recently. We just learned that the boy who died had fallen from a window. We didn't even know his age until now. Daryl had it about right. Probably just a lucky guess or something, but he got it right. What is spooky, though, is that he not only got the age right and some idea of how he died, he got the name right. The boy's name was Thomas, but for some reason his immediate family called him 'Tim'."The recipient's mother reported:"Are you going to tell him the real twilight zone thing? Timmy fell trying to reach a Power Ranger toy that had<br />fallen on the ledge of the window. Daryl won't even touch his Power Rangers any<br />more..."<br /></p><p>Case 10The donor was a 34-year-old police officer shot attempting to arrest a drug dealer. The recipient was a 56-year-old college professor diagnosed with atherosclerosis and ischaemic heart disease.The donor's wife reported:"When I met Ben [the recipient] and Casey [Ben's wife], I almost collapsed. First, it was a remarkable feeling seeing the man with my husband's heart in his chest. I think I could almost see Carl [the donor] in Ben's eyes. When I asked how Ben felt, I think I was really trying to ask Carl how he was. I wouldn't say that to them, but I wish I could have touched Ben's chest and talked to my husband's heart."What really bothers me, though, is when Casey said offhandedly that the only real side-effect of Ben's surgery was flashes of light in his face. That's exactly how Carl died. The bastard shot him right in the face. The last thing he must have seen is a terrible flash. They never caught the guy, but they think they know who it is. I've seen the drawing of his face. The guy has long hair, deep eyes, a beard, and this real calm look. He looks sort of like some of the pictures of Jesus."The recipient reported:"If you promise you won't tell anyone my name, I'll tell you what I've not told any of my doctors. Only my wife knows. I only knew that my donor was a 34-year-old very healthy guy. A few weeks after I got my heart, I began to have dreams. I would see a flash of light right in my face and my face gets real, real hot. It actually burns. Just before that time, I would get a glimpse of Jesus. I've had these dreams and now daydreams ever since: Jesus and then a flash. That's the only thing I can say is something different, other than feeling really good for the first time in my life."The recipient's wife reported:"I'm very, very glad you asked him about his transplant. He is more bothered than he'll tell you about these flashes. He says he sees Jesus and then a blind flash. He told the doctors about the flashes but not Jesus. They said it's probably a side effect of the medications, but God we wish they would stop."<br /><br /></p><blockquote></blockquote><p align="left">Anna called me about two weeks ago and she had a lot of joy in her voice. She was excited to tell me that she now did believe there was some cellular memory transferred from me to her with our kidney transplant four months ago. She told me that my shoe addiction had now taken up residence within her! Now that is funny because although Anna has always appreciated a good, cute shoe; she has spent the last few years of her life in a boring shuffle between flip flops, Sketchers and Converse. Since our transplant surgery she has purchased no less than eight pairs of high heeled smoking hot shoes. I know, because she calls to describe them to me every time she makes a purchase. Of all the things to transfer onto someone, she gets my shoe addiction. The only way this scenario could have played out better is if we wore the same shoe size!<br /><br /></p></blockquote><br /><p></p>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-37362195182860892812008-03-12T07:12:00.000-07:002008-12-09T18:43:38.478-08:00Happy World Kidney Day!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj13P56MBtx-VAadFrdnc27uy0tF-S_brCzakXZsyghgcaytOuShPuVPPAeDLa-2JBle7Z7-8IIuaU6NtrPioKdzPQiuTynka0cq-tcDJX074bpcoIeKFv5dzPKjeCqT6xMvCVZGJBKnxs/s1600-h/World+Kidney+Day.gif"><img id="BLOGGER_PHOTO_ID_5176904683532997410" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj13P56MBtx-VAadFrdnc27uy0tF-S_brCzakXZsyghgcaytOuShPuVPPAeDLa-2JBle7Z7-8IIuaU6NtrPioKdzPQiuTynka0cq-tcDJX074bpcoIeKFv5dzPKjeCqT6xMvCVZGJBKnxs/s320/World+Kidney+Day.gif" border="0" /></a><br /><div>In case your little desktop calendar left off this very important day, I am here to inform you that tomorrow, March 13th is <a href="http://www.worldkidneyday.org/"><strong>World Kidney Day!!!!</strong><br /></a><br />World Kidney Day is being celebrated in more than 80 countries and territories and 6 continents. WKD is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF) and is held every second Thursday in March. </div><br /><div></div><div>Countless events will be taking place around the world to spread the message that Chronic Kidney Disease (CKD) is common harmful and treatable. For more information about the events, please visit the <a href="http://www.worldkidneyday.org/pages/2008.php">2008 Planned Events</a> section of the website. Unfortunately, there isn't anything going on in Portland, but it looks like there is some activity up in Seattle. </div><br /><div>And for the record, our favorite kidney (taking up residence with Anna) is still doing great. We are both doing great. The surgery seems so long ago even though it was only four short months ago. Thank you everyone for your continued interest and best wishes for our continued health. And because I've received some hate mail (ok maybe not hate mail but update mail ...this if for you KANDACE) I'm going to try and be better about updating this site. I just honestly thought that since the big stuff was over, that folks weren't reading this so often anymore. My apologies!</div><br /><div>So what are you all doing to celebrate World Kidney Day? I'm sending a care package to my old kidney..check the mail Anna!</div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-39529664207213739872008-02-08T17:10:00.000-08:002008-12-09T18:43:38.815-08:00What a difference a year makes<div>Today is the one-year anniversary of <a href="http://en.wikipedia.org/wiki/Anna_Nicole_Smith">Anna Nicole Smith's death.</a> Why am I writing about this on the kidney blog? Well it just so happens that this date was also the beginning of our kidney transplant journey one year ago.<br /><br />I remember hearing the news about Anna Nicole's death and needed to call my Anna right away. She is the queen of all things Hollywood you see and we have an unsaid pact to always ke<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpY34DDJ5ELBSc2ws6VUnLOYbzYJB6QnPyzHUoW6bWoXfQSCP1FMIsrv0zSkEza6honn5k-T-fiLJUYo1w5LKLb57fdPCK1ERJmEVkg5jlWO2GFB9Qc2LJ02CS57dP8CVCGH5CWZs_nu8/s1600-h/annanicolesmith.jpg"><img id="BLOGGER_PHOTO_ID_5164753836057222290" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpY34DDJ5ELBSc2ws6VUnLOYbzYJB6QnPyzHUoW6bWoXfQSCP1FMIsrv0zSkEza6honn5k-T-fiLJUYo1w5LKLb57fdPCK1ERJmEVkg5jlWO2GFB9Qc2LJ02CS57dP8CVCGH5CWZs_nu8/s320/annanicolesmith.jpg" border="0" /></a>ep one another up to speed on all the celebrity gossip. I called and to my surprise Anna didn't know anything about Anna Nicole's death. I could hear Anna's mother Diane in the background saying "Whaaaat, how did we not know that?" Come to find out the reason why Anna didn't know about this sensationalized death was because this was the day her kidneys started shutting down. Well, if I'm being technical, her kidneys started shutting down years ago. But on this date one year ago, her kidney function hit a point that she could no longer resume a normal daily routine. On this day last year, Anna learned that her life was about to change - of course none of us thought it would be such a dramatic year full of dialysis and numerous hospitalizations, eventually leading to a kidney transplant.<br /><br />People tend to laugh when they say our names together "Anna/Nicole" - which is why I find it extra creepy that the death of the over-publicized sensation marked the beginning of life-changing experience for this Anna/Nicole duo. In addition, after Anna Nicole's death, reports were made public that <a href="http://www.msnbc.msn.com/id/17365408/">she had been battling Lupus </a>- the same auto-immune disease that shut down Anna's kidneys. </div><br /><div>So even a year later, when I see the footage of that creepy <a href="http://www.showbizspy.com/2008/02/06/larry-birkhead-and-dannielynn-visit-anna-nicoles-grave/">Larry Birkhead</a> and his daughter; I still go back to that place a year ago where I sat in my office and cried because it was the beginning of a immensely long and arduous year.<br /><br />I talked to Anna today, she had her bi-weekly doctor's appointment this morning and found out some bad news. At the ripe old age of 33, Anna has <a href="http://www.nlm.nih.gov/medlineplus/osteoporosis.html">Osteoporosis</a>. This is directly connected to her Lupus and kidney failure. Apparently, it's a pretty bad case too and is in at least three different locations. She goes back in next week for an MRI to determine if it is anywhere else in her body and to set up some type of treatment program. She's stuck in a difficult position, the Osteoporosis, located in her lower back and hips, is highly painful, but she cannot take pain medications (they make her violently sick). She can't even take over the counter Advil for pain, because you cannot take Advil or any other <a href="http://orthoinfo.aaos.org/topic.cfm?topic=A00284">NSAIDS</a> if you only have one kidney. So I'm trying to convince her to move onto the path of Eastern medicine and try some acupuncture for pain relief. Anyone know of any good acupuncturists in the Seattle area?<br /><br />So hear we are, another February 8th, getting more bad news. Next year I'm considering sleeping through this day. </div>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-66290739415649772012008-02-07T05:47:00.000-08:002008-02-07T08:57:15.432-08:00Sick of being sick<p>I was told that my immune system was compromised post surgery. I was told that if there was any sickness to catch, I would catch it, at least for the next 12 months. I guess I was feeling a little invincible because I didn't catch anything in November and December. But here I sit in mid-February and I've been sick for about a month now.<br /><br />It all started with Macworld, it's a yearly event I attend for work and this year I lost my voice, total and complete laryngitis. This has happened to me before, so I didn't think anything of it. But unfortunately, this was just the beginning of my weakened immune system. After the laryngitis, I caught a cough that rivals an emphysema patient. It's such a deep ugly hacking cough that I finally went to the doctor over it last week. She told me that she'd send any other patient home, but because my immune system is so compromised, that she wanted me to take some potent drugs.<br /><br />Then yesterday, just when I was finally getting rid of my cough, I've come down with some real icky and funky illness. I'm incredibly achy, my joints are in severe pain and I'm very feverish. I woke up around 2:00 am this morning drenched in sweat. I can't seem to bring my fever down, I hope this passes soon because I am sick of being sick. </p>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-21184740906132194452008-01-29T18:40:00.001-08:002008-12-09T18:43:39.148-08:00That's one way to do it<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOV5a77Xpp8p0LsEf-tjRoIf8MvvyfKWsbSjTdA_FaG9XD6YSHWGVwDdKuUgkTEBT9jBc5EHt1aYwvMQVz8voIVom-JSk6YQ_UiaMFD9zzGUOvpNKYk1Ahz50Do4_umm9Rpef1Y1n6jM4/s1600-h/billboard.gif"><img id="BLOGGER_PHOTO_ID_5161094115899137058" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOV5a77Xpp8p0LsEf-tjRoIf8MvvyfKWsbSjTdA_FaG9XD6YSHWGVwDdKuUgkTEBT9jBc5EHt1aYwvMQVz8voIVom-JSk6YQ_UiaMFD9zzGUOvpNKYk1Ahz50Do4_umm9Rpef1Y1n6jM4/s320/billboard.gif" border="0" /></a><br />As seen on billboards across the great state of Texas last year. Apparently, it worked. <a href="http://www.butchneedsakidney.com/">Butch </a>found himself a donor (five of them actually) and the transplant went smoothly.Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-29725124923806395992008-01-20T13:47:00.000-08:002008-01-20T14:41:56.220-08:00a little show<p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzUNSf9Q-BCmAS5a86hhi4b9Miy-CVGtLcMA2z5fCDUGsElO0r9f_j9wJ79p5aADcco81qdEUs1Dm5jcRoPrA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>Anna and I put this little slideshow together last fall for our poker night fundraiser. I kept meaning to add it to this blog for those of you that couldn't make it to the event, but never got around to it until now. So here you go - a step back in time, complete with 80s hair and 70s fashion. Be forewarned, this is pretty long - make sure you settle in with a cup of tea first. </p><p> </p>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-5516291744607126732008-01-14T23:01:00.000-08:002008-01-14T23:03:54.514-08:00Kidney VacationAnna caught a nasty flu bug that turned into some extra nasty stuff like water on the ear among other icky things last week and as one might imagine, it knocked her out pretty badly considering her immune system is so weak these days. The good news is that we learned she has been taking a consistent dose of antibiotics since the transplant –so she was actually able to recover faster than normal, which is good news.<br /><br />When I went to visit Anna a couple of weeks ago, we decided to take a big trip on our transplant anniversary next November. Anna has decided that since she is likely going to be healthier than she has been in years, she doesn’t want to take a lazy holiday on the beach – instead she would like to participate in an active vacation. So we are trying to brainstorm some fun ideas for our November anniversary getaway. Currently we are considering a backpack trip down into the Grand Canyon. It’s only a three day trip – so even if it turns out to be exhausting and excruciating it will be short. Scott is recommending we play City Slickers and participate in a cattle drive, but I’m pretty sure that is more of a summer activity than late fall.<br /><br />Soooooo – anyone have any good ideas? Where should we go to celebrate a year with a new kidney?Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-12787471598004530952007-12-28T16:47:00.000-08:002007-12-28T17:00:19.975-08:00A week of firstsToday is the seven week anniversary of Anna's kidney adoption. Currently, everything is going well for both Anna and her kidney. Her tests continue to show good results and she is feeling better and better every day.<br /><br />This week I added some "firsts" to my mono-kidney routine. I was able to take my first post-surgery bath - which really isn't a big deal since I'm a shower person and don't like baths too much. But I was feeling pretty icky earlier this week and when I'm getting sick, I want a long hot bath. So I checked in with my kidney coordinator to make sure everything was ok and after checking on my incision scars to ensure everything was as it should be - got to enjoy my first post-surgery soak. It was pretty nice too.<br /><br />Also this week I ran for the first time. I was prepared to just take a nice stroll on the gym's treadmill as I have been doing for the past month but for some reason I just had the biggest desire to run on Wednesday. Not sure if I just had extra energy or if something inside of me was telling me it was time to turn up the speed but I wanted to run. So I did. Now by run, I mean I jogged. I'm sure some of my running friends would qualify my jog as a fast walk, but I know I had two feet off the ground at the same time so it was certainly not a walk. It felt good. I only ran two miles, but it was great to do it again and a day later I'm still feeling good so I think I'll try it again next week.<br /><br />The other "first" for this week is that in about 4 hours or so, I'm going to see Anna again. I haven't seen her since I left her house the day after Thanksgiving. I'm excited to see her because you can only really check in with someone in person - talking on the phone is a limited experience. So I'm pretty excited!Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2tag:blogger.com,1999:blog-3467925375915972463.post-50813867638989969772007-12-25T19:00:00.000-08:002008-12-09T18:43:40.036-08:00Merry ChristmasOn the morning of Christmas Eve, my husband and I were having a cup of coffee over conversation of the <a href="http://www.people.com/people/article/0,,20167059,00.html">demise of the Spears sisters (Britney and Jaime Lynn</a>) when I looked up to find my mother had dressed my five-year old daughter in a vaguely familiar ensemble. It was a dress my grandmother had made for me in the early 80s, I believe I wore it for my first grade class photo. At first I was surprised to see the dress since I hadn’t even thought of it for at least 20 years, but then I was shocked when I could see that it mostly fit my daughter’s skinny frame. Although I was about a year older when I wore it, my daughter is much taller than I was at age five, so the overall fit wasn’t too bad.<br /><br />Issabel flew into the living room, gave a twirl and a laugh and exited nearly as quickly as she had arrived. I looked down as tears pooled in my eyes. My husband gave me a puzzled look and asked if I was upset over our conversation about Jaime Lynn Spears getting pregnant at 16. As upsetting as that thought is, that was not why I was getting emotional. The true reason was because I specifically remember wearing that exact dress while running down the halls of my grade school holding Anna’s hand. And it was then that I realized Issabel is now the age Anna and I were when we met and became lifelong friends.<br /><br />Christmas is a time for being thankful and grateful for friends and family. Christmas is a time to slow down and appreciate what matters most – from honoring family to spirituality to charity. It wasn’t until that moment yesterday morning that I absorbed the spirit of Christmas this year. I’ve been moving so fast this season, feeling behind on my decorating, shopping and getting my Christmas cards finished (by the way, if you haven’t seen yours yet it is coming) that I nearly let the bigger picture slide past me.<br /><br />I hope everyone had a lovely and healthy holiday this year, in addition I hope everyone has at least one dear friend, either a new friend or a lifelong friend, that they are thankful for this season. As Robert Louis Stevenson wrote, “No man is useless while he has a friend.”<br /><br />Merry Christmas!<br /><br />Issabel - 2007<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8tD-uRhlr_k_tIXnR_uB-lGf7oXkIQwjU6C4JBfCwxtMeGj_FtCOvyvO3B98XD0Dcxb0MO9NkF-fRz97K0SsIPRJeBPHEwL6Y_mLXdKGdGYtRGvOWsd1_fujMxDJ7cpc2UPJUsTe96T0/s1600-h/12-25-07+059.jpg"><img id="BLOGGER_PHOTO_ID_5148111979885333810" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8tD-uRhlr_k_tIXnR_uB-lGf7oXkIQwjU6C4JBfCwxtMeGj_FtCOvyvO3B98XD0Dcxb0MO9NkF-fRz97K0SsIPRJeBPHEwL6Y_mLXdKGdGYtRGvOWsd1_fujMxDJ7cpc2UPJUsTe96T0/s320/12-25-07+059.jpg" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg18TX9rK3o6qqvA0vfdHCyHyVYeIy1M5xwumvTpMbUNlUCoy9gB2OMyX6lJVJtGF7EdB_Ty8Lf4IQA_ehmuJ4wGBHYTPHrpl23Rkg-6mHzUZGsWtNcJ2CwHEEAz-G1MbK0joVUeQQkzho/s1600-h/12-25-07+101.jpg"><img id="BLOGGER_PHOTO_ID_5148112306302848322" style="CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg18TX9rK3o6qqvA0vfdHCyHyVYeIy1M5xwumvTpMbUNlUCoy9gB2OMyX6lJVJtGF7EdB_Ty8Lf4IQA_ehmuJ4wGBHYTPHrpl23Rkg-6mHzUZGsWtNcJ2CwHEEAz-G1MbK0joVUeQQkzho/s320/12-25-07+101.jpg" border="0" /></a><br />Nicole - 1981Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com1tag:blogger.com,1999:blog-3467925375915972463.post-68373945134159791602007-12-20T20:20:00.000-08:002007-12-21T08:39:31.758-08:00Tired but happyI went back to work today- which means Friday marks six weeks since our surgery. It was a long day, but a good day. It was so encouraging to see all my friends and co-workers again and I was quickly reminded how lucky I am that I get to work with really great people. I did pretty well the first half of the day, but after lunch I could feel myself crashing so I snuck off around 3:00 to take in a quick nap in one of our conference rooms (luckily it is furnished with two comfy couches). Unfortunately my mother (of all people) called me and woke me up, so my nap was only about 15 minutes, but it did enable me to actually make it to the end of the day. <br /><br />On the Anna front I have VERY good news. She had some lab work done on Wednesday and her white blood cell count jumped up 1,000 points!!!!! Yipee and Merry Christmas! I am so happy I could cry. No kidney rejection here folks!Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com0tag:blogger.com,1999:blog-3467925375915972463.post-49777094979227086582007-12-16T13:16:00.001-08:002007-12-16T13:21:09.242-08:00UpdateI attended a holiday party last night and was scolded by several of my friends. Apparently I haven’t been very diligent about updating the blog in recent weeks. I figured it would be boring for folks to hear that I’ve been lazy and doing very little, but that is at least an update and people are looking for any kind of information right now. <br /><br />I continue to get back to a more normal routine with every passing day. I head back to work on Thursday and am looking forward to having social interaction with people beyond those that are pumping my gas and bagging my groceries. I have reduced my downtime during the day to a single nap around Oprah, I mean 4:00, I’ll miss my nap time the most when I return to the office this week. <br /><br />Anna has reduced her appointments at the hospital to bi-weekly visits. She goes every Monday and Friday to have her blood and urine tested. Her doctor continues to be very pleased with her kidney function – everything is working well as it should be right now. <br /><br />Last week we did get some uncertain results from the lab work. Anna’s white blood cell count was dangerously low, so low that her doctor was very concerned she was facing an infection somewhere in her body, potentially signaling the start of kidney rejection. Her orders were to go home over the weekend and not worry – yeah right. She returned on Monday and her white blood count did go up, but by very little. Again her doctor told her not to worry and that they would test again on Friday. This Friday the doctor decided that since her kidney was functioning so well and because Anna was showing no additional signs of infection (such as a fever) that they were going to tweak her medication levels and see if that would positively impact her cell count. Of course, when you are dealing with an organ transplant – you are never truly safe from the chance of rejection, but for now, things seem to be under control. We will just have to keep monitoring her white blood cells and pray for her count to continue to climb. <br /><br />On a lighter note, I was reminded last night of a conversation I had with my kidney team two months before surgery. I was told that people never ask to see your nephrectomy scars post surgery as it is just a little bit too intrusive and personal for most folks. For the record, I want to say that my friends are indeed overly intrusive as I have been asked to show my kidney scars more times this week that I can count. The first person to ask to see my scars was my friend Dianne. I was at a holiday party on Thursday and it was the second thing she asked me after the obligatory “how are you feeling” question. I showed her my little laparoscopic scars, but told her she would have to wait on the big incision as it was below the beltline and I wasn’t about to drop my pants in the middle of the annual Maxwell PR party –that is, not without at least three more glasses of wine (kidding, ha ha). Then at my company’s holiday party last night, I was asked many, many times to show my scars. Talk about busy bodies huh? Just kidding, I don’t mind!Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-89530838411528798492007-12-05T09:58:00.000-08:002007-12-05T10:00:46.149-08:00How much?Ever wonder how much it costs to have an organ removed? While I was trapped on the Oregon Coast this week by the storm of the year, I received my statement of hospital services bill for my half of the kidney transplant. I always find it so interesting to pour over medical/hospital invoices; it’s shocking to see how much medical procedures cost. <br /><br />My pre surgery CT scan cost a little more than $1,000, the ‘nephrology consult’ the day before surgery was pretty cheap at just over $300. And then there were costs associated with the surgery itself. My hospital stay from Friday through Monday was nearly $5,000, my pharmacy bill and medical supply fees were nearly $1,500, my x-rays and anthesia came in just over $500. They even added a charge to my stay for spending time in the recovery room for just over $1,200. My actual kidney nephrectomy cost just under $7,500. When everything is said and done, my total charge comes to a whopping $19,344.00 Gulp – and remember that doesn’t include Anna’s costs. My procedure was a fairly simple kidney removal, she had other fees associated with her stay that I did not incur. She stayed in the hospital longer, had to have three days worth of anti-rejection medication administration onsite at the hospital and she still returns to the hospital every other day for lab work to ensure everything is functioning as it should. <br /><blockquote><br />I feel like one of those Mastercard commercials: <br />Gas from Portland to Seattle: $50<br />Pre-surgery hotel room: $200<br />Kidney nephrectomy: $19,344<br />Seeing your best friend healthy for the first time in years: priceless </blockquote>Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com3tag:blogger.com,1999:blog-3467925375915972463.post-20105674989770637642007-11-29T10:45:00.000-08:002007-11-29T10:48:47.104-08:00RecoveryI’ve been home now for six days. Tomorrow will be three weeks since our surgery. My, how time flies. <br /><br />I've found it to be been much harder to recover at home with my nearly five year old crawling all over me. Children have an amazing ability to sap all energy from you. <br /><br />Good news on the Anna front – she was able to have her neck catheter removed on Monday! (See picture of Anna in sidebar to see catheter). They didn’t have to put her under as we thought; instead her doctor just numbed her up and removed the tubing while she was awake. Apparently, it was still a little bit painful, but Anna is VERY happy to have it gone. <br /><br />On a day to day basis, Anna is still living with a significant amount of pain from the surgery as well as a somewhat numb right thigh. Her doctor told her that these conditions are both related to how thin she is right now. Because she currently has very little body fat right, her new kidney is pressing on nerves that are making her leg numb. The only remedy is for her to gain some weight. Her high pain level is also related to her extremely thin frame. <br /><br />I’m trying to get back into a normal routine, but it’s difficult when you need to stop to rest as much as I need to right now. It’s very frustrating for me as I’m always on the go. My day goes something like this (give or take on the times): <br /><blockquote><br />8:00 – take Issabel to school<br />8:30 – come home and take a little rest<br />9:00 – drink coffee, do some laundry, call Anna<br />10:00 – take a little rest<br />10:30 – do some other miscellaneous chores, check email<br />11:00 – take a little rest<br />11:30 – get out of the house,take a walk, get a little movement in my legs<br />1:00 – take a nap<br />2:30 – miscellaneous stuff, and more resting<br />4:30 – pick up Issabel from school<br />5:00 – dead to the world</blockquote><br /><br />I was very busy yesterday and didn’t take a single nap (unless you count the half hour that I fell asleep on the couch before I went to bed for the night). I’m paying for that today, I woke up with a horrible headache and my pain level was up higher than it has been since I came home. I probably should have taken some of my prescribed meds, but I popped two Tylenol instead and am feeling better now. I think my body is just trying to tell me that I am not recovered yet and to back off for a little while longer before trying to resume a more normal schedule. <br /><br />Well – it’s time for me to take a little break. I’m taking it super easy today.Nicolehttp://www.blogger.com/profile/03659375983913639149noreply@blogger.com2