2024 Kidney Summit
Hello Kidney!
by dorisjlew
1M ago
Has it been two years since I posted on my blog? Not sure who’s even reading this anymore but some are asking about my kidney life so I thought I’d share my Linkedin post today… Felt empowered today joining the force of passionate advocates all armed with stories that take us to the steps of Captiol Hill and into the offices of our lawmakers. The last two days here in DC for the NKF Kidney Patient Summit, I heard even more stories from my own team of CA advocates… A teammate who donated a kidney years ago was denied life insurance despite the fact that living donors are among the healthiest a ..read more
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Happy New Year!
Hello Kidney!
by dorisjlew
2y ago
I started the new year this morning in my sunny though frigid dining room eating Ted Lasso biscuits.  Despite following a Milk Bar recipe, I don’t find them as buttery, OMG-amazing as boss lady on Ted Lasso makes them out to be; and yet I cannot stop from myself from reaching for “just one more piece”.  Between bites, I am emailing out our New Year greeting.  Looking at our family photo, I recalled the one we shared years ago when I first went public with my kidney journey.  Those boys are now out of the house, so we connect weekly via online Family Nights playing Skribbl ..read more
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Eat, Drink and pee Merry
Hello Kidney!
by dorisjlew
2y ago
I’m back at the Kidney Walk again this year, this time with a new name for my team: Eat, Drink and pee Merry! After years as “The Lew Crew” I decided we needed a new team name that would reflect why I walk.  It isn’t about me anymore but about what can happen when patients become healthy again.   Besides being playful and celebratory, there’s a lot packed in that name. Since my transplant, I love to eat again.  Nothing tastes metallic anymore, and I no longer have dietary restrictions.  Drinking plenty of water is a freedom I can enjoy again without worrying my ankles may ..read more
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Five Years Kidney Strong
Hello Kidney!
by dorisjlew
3y ago
Yesterday I celebrated my five year kidney-versary!  I sent off a celebratory Happy Kidneyversary! message to my donor, set to launch with a burst of digital confetti when he opens it. “That time of year ALREADY??” he pinged back, “Happy Kidneyversary back at you!!!”   Then our text thread wandered off into talk of hiking, back pain, e-bikes and pickleball.  Marty and I are like kids these days shopping for a new toy:  fat tire trail bike? or a smooth riding city bike, one on which I can pedal across the bridge to Treasure Island? Superdonor has been looking at bikes too, b ..read more
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A Huge Win for Patients
Hello Kidney!
by dorisjlew
3y ago
Late last night Congress passed the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act into law! I had been waiting all day for the news to come, and when it did, I literally screamed. This legislation won’t affect me much unless I ever lose my health insurance, but for those who can’t afford the costly anti-rejection medication post transplant, this is literally life-saving news. In fact, getting a new kidney is now an option for many who couldn’t previously afford it, or were denied because of their inability to pay. Currently Medicare pays for a patient’s immun ..read more
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Ninja Warrior Austin Gray
Hello Kidney!
by dorisjlew
3y ago
I’ll be tuning in tonight to the #AmericanNinjaWarrior finals at 9pm to cheer on living kidney donor Austin Gray, who donated a kidney to a childhood friend just months before he competed on the show. In a new PSA and long-form video, which chronicles Gray’s journey to becoming a donor to kidney patient Kaylee Adams, he discusses how he first decided to donate and how it affected his experience on the hit show airing on NBC.  “There are 100,000 people who need a kidney, and I think there’s definitely 100,000 people in the country who are willing to be donors but just ..read more
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Prop 23
Hello Kidney!
by dorisjlew
3y ago
I am voting No on California’s Ballot Initiative 23.  I’ve been reading the positions on both sides and speaking with my colleagues at the National Kidney Foundation, and I have yet to find any indication that Prop 23 would ultimately benefit patients.  Proposition 23 requires a physician be physically present at a dialysis center at all times.  There is currently a medical staff at every center that includes a medical director, registered nurses, dialysis technicians, social workers and other health care practitioners who are fully trained to address dialysis patient issues.&n ..read more
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Sheltering in Place (part 2)
Hello Kidney!
by dorisjlew
4y ago
Yes, we are all living in the middle of three movies right now.  Between a virus, BLM and a Tweet-happy President, my mind is spinning.  I’m glad to be sheltering in a quiet spot of Oakland that backs up to the East Bay Regional Park. These trails where I run keep me calm and centered. Did I say run?  Yes, pre-pandemic me would not recognize quarantine me.   But here I am, running because I now have no excuse and because I better get serious about my osteoporosis.  I also committed myself to a 31-day walk/run fundraiser challenge for the month of July.&nbs ..read more
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QA session for Kidney Patients and Transplant Recipients
Hello Kidney!
by dorisjlew
4y ago
As a transplant recipient taking immunosuppressive medications, should I still go have my labs done?  Attend my post-transplant appointment in two weeks?  Adjust my immunosuppressive medications?  Even with the constant stream of coronavirus-related news and information, it took a while before I heard any guidelines specific to transplant recipients. NKF’s Chief Medical Officer, Joseph Vassalotti, MD, addressed those and other questions in a Facebook Live Stream event last week.  Tomorrow he’ll be back for session #2.  Now’s your chance to ask your questions and hear Dr. Vassalotti discuss ho ..read more
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Sunday Thoughts
Hello Kidney!
by dorisjlew
4y ago
It’s Sunday.  I just finished online service with my church community at First Covenant Church.  Since I’m in the mood, thought I’d share insights I’ve been hearing and reflecting on recently: In times of crisis, our instinct is to cultivate a mindset of self preservation – which is appropriate.  But not to the point of neglecting the difficulties of people around me.  Are there people around me who need to know there’s someone looking out for them? And one that I’ve been recommending to friends: a conversation between Pastor John Ortberg and Dr. Condoleezza Rice who shares about her experienc ..read more
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