2024 Kidney Summit

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 among us. That’s why we push for Congress to pass the Living Donor Protection Act.
Another teammate had to wait many agonizing days while a family member was on life support after a medical event; the transplant system almost couldn’t connect her donation with a recipient. Add that to the shocking fact that thousands of kidneys are discarded each year. That’s why we urge for funding to transform and modernize the transplant system. Patients deserve a high-performing transplant system.
A dialysis nurse on our team saw why many patients could benefit from home dialysis. So we solicit support for the home dialysis bill which allows more to dialyze at home when they are too far from a center, or can’t find childcare or access transportation or take time off to go to a center.
For me, I found out I had kidney disease after being denied life insurance. And when I listed some of the ways a patient could slow down possibly stop the progession of kidney disease, my doctor said to me “Yes, but for you it’s too late”. And that fuels my fight to urge Congress to develop a federal screening recommendation, so many who don’t know they have kidney disease will be diagnosed in time to do something about it….
After the last of our five meetings my teammate Maria could barely take another step. I dosed off on the Uber ride back to our hotel. Tired feet but energized souls. Rest up kidney warriors. We’ll make our way to back home tomorrow to continue our journey. Our lawmakers have offices there too. 😊 #KidneySummit

Happy New Year!

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.io and Scattergories.  Earlier in the year, when vaccines kept us more protected, we spent a week in Hawaii together, zip-lining in the dark and navigating hidden trails that looked like the set of Lost, with muddy trails and even a mysterious hatch. 

Thank you to my donor for making another year of moments like these possible.

I hope that as you begin 2022, you are healthy and well.  And if you are, I hope you are living purposefully with gratitude and looking for ways to help others live a better healthier life.  Take care of yourselves and each other. 

Wishing you all the best for 2022!

Eat, Drink and pee Merry

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 swell up because my failed kidneys can’t remove the excess fluid.

And well pee, you know it’s hard for me not to mention that on my blog every so often.  Pre-transplant I was hardly making trips to the bathroom anymore – maybe only once a day. Failed kidneys just aren’t able to remove the toxins and excess fluid like healthy kidneys do (thus the need for dialysis).  So any kidney transplant recipient will tell you Urine a good place when you can pee!  😜

So there you have it.  A new team name and now a design to go with it.  We’ve decided we’re making a team T-shirt every year as well.  I hope next year, when we can come back together in person as a community for the Kidney Walk (fingers crossed), you’ll join Team Eat, Drink and pee Merry.  By the way, we won the “most creative team name” contest. 😄

If you’d like to donate or learn more about why I walk, please visit my Walk page.  We’re about $600 shy of our fundraising goal.  

If you’re wondering, a virtual pandemic-era Kidney Walk means I can walk anywhere, anytime with my friends.  Yesterday I gathered with a few friends to walk the shores of Alameda.  I hope to get together with more of you in the weeks ahead to take more steps.  (If you’re not yet vaccinated let me know when you do, and I’d love to meetup!)

Team Eat, Drink and pee Merry taking steps in Alameda, CA

Five Years Kidney Strong

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, but Superwife says they’ll never ride them; they’re too busy doing other things.  I love that retirement has not slowed them down at all.  Why, you can even donate a kidney when you’re retired!  

At five years out, his scars are surprisingly barely visible.  He pointed at the spot where one of four arthroscopic incisions were made.  Four!  That’s not even including the long horizontal one where the actual kidney emerges. In my mind’s eyes, a team of doctors, anesthesiologist, nurses all clad in blue scrubs work their magic under bright surgical lights, masterfully navigating laparoscopic cameras and instruments to eventually extract a spare kidney out of a human body.  I can’t think of another example where major surgery is performed on a body that is fully healthy. 

My deep stark brown scar on the other hand has not faded much, as if proudly announcing every time I see it that a life-saving event took place here; it was started and completed in three hours, yet took years of planning in God’s design to get there.  If I had Selena Gomez’ body, I would proudly post all six inches of my gram-worthy scar too.

Dr. Adey, my transplant nephrologist at UCSF, told me last week at our bi-annual check-in that my kidney function is strong, has been stable, and, at five years, is a good indicator that my transplanted, recycled kidney will likely last a good many more years.

Thank you Superman donor. Happy Kidneyversary to us.

A Huge Win for Patients

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 immunosuppressants for 36 months after transplant. After that, we’re on our own. But this year, NKF and others in the community showed that extending Medicare indefinitely will actually save Medicare $400 million dollars over the next ten years. So we all win. Taxpayers, kidney patients, caregivers, donors, families. I feel another woohoooooo! welling up inside of me…

I am deeply grateful for the NKF leadership and the grassroots volunteer advocacy group of which I am a part. They have been pushing for this protection for two decades; I joined the effort only three years ago, and I have been inspired by the persistence and passion of my fellow advocates. It is another example – especially in today’s context – of the importance of advocating for those who are disadvantaged so that they can receive the same privilege and protections that the rest of us enjoy.

Thank you to so many of you who have supported the advocacy effort by sponsoring my fundraisers. It takes a great big village.

https://youtu.be/MxrTOwjuYP8.  

Prop 23

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.  And while a physician isn’t mandated to be onsite at all times, nephrologists already see their patients every month, oftentimes at the dialysis center.  

As it is, there is a shortage of nephrologists in some communities, and requiring them to be onsite at the dialysis center would limit their time at hospitals and health clinics where they are needed to care for pre-dialysis kidney patients. 

Prop 23 also requires that dialysis clinics report infections to the state health department and National Healthcare Safety Network (NHSN).  I don’t necessarily disagree with this, but dialysis centers in California are already required to report infections to the Center of Medicare and Medicaid services (CMS) and the ESRD Networks. 

Sheltering in Place (part 2)

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.

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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. 

My kidney donor Superman and I decided that in gratitude for our good health, and in response to the coronavirus burden on kidney patents, we would raise support for the National Kidney Foundation. As a multi-organ disease, COVID is sadly damaging many kidneys in the process. If you are able to give, here’s our Team Fundraising page.  

You can also watch our step progress on the StrideKick app.  I’m “kidney_bristow” in second place.  Superman Skip is heroically trekking along despite a hurt toe. Superwife (aka “laureend”) is smoking us all at 92%.  

Marty and I are working full time in our offices at home.  I occasionally see him in the lunch room.   He’s also the mail guy who brings me my magazines.   And there’s some teenager in another room.  We’re not sure what he does all day.  Management should really reassign him to the mail room.

Work has nice perks. I’ve set up a bird feeder and watch the finches and orioles outside my window.  At 5:30pm daily, a turkey family comes to visit.  And every day is Bring Your Dog to Work Day.  

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By the way, that teenager has now graduated high school!  He’s off to college in September. Though classes are virtual, he’ll live in the dorms and hopefully be able to safely play lots of spike ball and ultimate frisbee.  I am SO excited for his new adventures!

Woo hoo!! Bishop O’ Dowd 2020, Cal Poly 2024!

It’s a celebration for the High School seniors hosted by our amazing youth leaders at First Covenant Church. Special delivery of dinner from Creekwood in Berkeley, too! Thank you!

Last month, I signed up for a cook-along demonstration with chef Phillip Franklin Lee as part of a charity fundraiser, and it was so much FUN!     

Making blackened cauliflower with former Top Chef contestant Phillip Franklin Lee and wife/pastry chef Margarita Kallas-Lee.

We’ve all gotten into cooking a lot and now making our own pasta including Ramen noodles.

So that’s a glimpse of what’s going on here.   I hope you are all staying safe and healthy.  Please share some quarantine activity ideas with us!

Sunday Thoughts

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 experience during 9/11 and today’s global crisis, and the role of faith in her life.  

Happy Sunday!  Be encouraged!

 

Sheltering in Place

Congrats.  We made it through the week….. it is Saturday, right?  The weeks and days have no shape or structure anymore I’m just going to assume we have arrived at the weekend.

Here’s a glimpse of my week…. or has it been two weeks?…..

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We’re spending more time as a family.

I’m getting better at Settlers of Catan and Pandemic.

After a week of no makeup and sweats, I find putting some color on my face and getting dressed in “day” clothes make me feel more productive.

Zoom meetings work great but now I really have to paint over those ugly patches on my wall.

I could use virtual backgrounds but that doesn’t change the fact that the patches are still ugly.

Plus sometimes I can’t get that feature to work for me.

Hey! My ugly patch turned into a cloud!

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What’s your week been like?

Meeting with Senator Feinstein’s Office

Continuing our advocacy work from the Kidney Summit in March, we met with the staff at Senator Diane Feinstein’s office in San Francisco yesterday.  State Director Jim Lazarus and Constituent Services Rep Joanne Delgado heard our request for the Senator to support the Living Donor Protection Act and extending immunosuppressive drug coverage for transplant recipients.  Yes, you’ve heard me talk about the Living Donor Protection Act quite a bit on this blog.  That’s because it takes work and persistent voices to get legislation through.

As of this week there are 67 Representatives in the House who support this bill (Is your Rep one of them?)  In the Senate there are 14 co-sponsors, and none of these Senators are from California.

So come on, fellow Californians! Let’s do this! Click here to send a message to Senators Harris and Feinstein and your local Representative in the House to support our living donor heroes!

The Living Donor Protection Act will protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long-term care insurance to donors, and from charging higher premiums.

The National Kidney Foundation is also asking Congress to extend Medicare coverage of immunosuppressive medication for transplant recipients.  By extending this coverage, Medicare saves money by preventing  patients from going back onto dialysis which is far more costly.

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Hope you’re all enjoying the rest of your summer.   Call me for boba!

And congrats to Bay Area Team Red Dawn for third place at the U.S. Open Club Championships in Ultimate frisbee (U20 boys)!