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

Goodbye, I Won’t Miss You!

 

Goodbye dialysis machine!

Goodbye medical pole!

Goodbye boxes of dialysate!

Many thanks to you; you saved my life.  But I wish you well as you move on to someone else who needs you now.

But I won’t miss the cramps, the pregnant feeling, the aching back, the fatigue, the half-hour setup of tubes and solution bags each night, the meticulous sterilization at every step, the hassle of disconnecting tubes before trips to the restroom, the buzzing and humming of the cycler that wakes me, the daily cleaning of my catheter site, the documentation of results after each session, the visits to the dialysis center (though I loved the staff), the Epogen injections, the Venofer injections,…

It wasn’t so bad when I was going through it, but now I realize how much I won’t miss you.

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Kidney Walk update: 50% of goal.  Thank you!!!
7 days to go. To sponsor me, go to my Kidney Walk page

Update on Dialysis

I got my first set of labs back since starting dialysis, and for the first time my toxin levels have come down!  I’m feeling a whole lot better.  No more nausea or dizziness, and my appetite is back.  I still wish I had the energy to run around with my soccer playing son but I’m a lot less sleepy than I was before.

Next Thursday I’ll be getting an automatic cycler, a machine that will do all the dialysis exchanges for me at night while I sleep.  That will free me up during the day.  I may or may not still need to do one exchange during the day, depending on my labs, but it will be so much nicer not to have to rush home every 4 hours to dialyze.  Thank you to everyone who brought me meals and made grocery (Berkeley Bowl) runs for me while I had (have) this crazy schedule.

I will be participating in the Kidney Walk at the end of the month.  I’m at 40% of my fundraising goal.  If you are interested in supporting me, you can go to my Walk page. Thanks to everyone who donated so far.  The National Kidney Foundation is doing really important work in educating, preventing, and treating kidney disease. Please remember to get checked at your next checkup.  It’s an easy test, and kidney disease is a silent disease.