My New Automatic Cycler

Look at my brand new dialysis cycler machine! I think it looks like some IBM relic from the 70’s, except that it has tubes, tubes, tubes coming out of it, the only giveaway that it’s a medical device.  There are tubes that connect to the dialysis solution bags, a tube that connects to me, and a super loooong one that snakes all the way to the bathroom next door and ending at the toilet where the tube is set up to drain out the used fluid.

In the back of the machine is a flash drive which informs the cycler of my customized therapy program, while recording all my dialysis data each night as fluid is exchanged.  I almost feel like I need to give it a name as I’m interacting with it every night, setting it up and telling it how to give me my life-saving dialysate while I sleep.

It came home with me last Wednesday after two days of training with Kelly my wonderful dialysis nurse.   I was eager to put it to work because I was hoping to lug it with me on my weekend retreat with my church family up to the Santa Cruz mountains.   The first night, two days before the getaway, my exchanges with the cycler were painful, like someone was squeezing an internal organ while throwing darts inside of me every time the machine wanted to fill my belly with fluid.  The next day Kelly said I’m probably still tender on the inside, and the machine shooting fluid into me wasn’t as gentle as a manual “drip” system.  So we made some adjustments and the next night the process went a whole lot smoother.  Thank goodness! If I couldn’t use the machine I would’ve had to still run dialysis manually at Camp Cov, which meant I would’ve had to disappear every 3-4 hours to dialyze.  Instead, I just ran my machine at night while I slept.  My husband, incidentally, ran his C-PAP machine which blows air through a mask to help him breathe and sleep better.  Our poor teenage boys.  They normally sleep through anything, but being in the same room as Darth Vader and a humming IBM printer was a bit maddening for them.   They were happy to finally crawl into their own beds at the end of the trip.

making smores at Camp Cov

So being free during the day I got to spend huge chunks of time hanging out and chatting with new friends and old.   FCC Family, I just have to say You totally rock!  Our community at First Covenant Church has been an amazing anchor for Marty and me.  Thank you to everyone for praying for us, checking in on us, and loving us in so many ways – Tracy and Tammie for accompanying me on my dog walks; Pat and Linda for sitting with me through my dialysis sessions; Natalie for making me homemade pizza (she can throw pizza dough in the air so they’re perfectly round), and many many others for their meals and errand runs.  And special thanks to Nancy, Catherine, and Terry for being my “Kidney Team” and learning all about kidney donation so they could field questions and talk to others.

One of the best part of being in community? The stories.  Everyone’s got a story; mine isn’t the only one.  As I share I get to hear the experiences, hardships, lessons, and victories of others.  For some, they’re still in the hardship stage and victory is no where in sight.  So I know my journey isn’t traveled alone.  Sometimes we don’t (and never will) know why something happens, but we can be looking out for ways God is still loving us through it.  After Pastor Nancy shared our kidney news with the entire FCC Family a few weeks back, and friends and family continued to spread the word through Facebook and emails, some potential donors have stepped forward to be tested!!!    ☺️  I don’t know who they are, and I don’t know how this will all play out, but I am beyond grateful that they would even consider this.  I know a new kidney gives me a second chance at life, and my family will have their mom/wife a little bit longer… but part of me also wants to beg my potential donor not to do this.  Who am I to deserve someone else undergoing major surgery and pain and unnecessary risk for me?   I just have to remember God’s got it under control.  He will take care of us all including my would-be donor.

So the Kidney Walk is this Sunday.  I am blown away at the contributions we received!  Thank you for helping me focus on something positive while I’m fighting this disease. We’re $300 shy of $4,000!  If you happen to be near the SF Ferry Building on Sunday morning, come look for us across the street at Justin Herman Plaza.  The Kidney Walk folks are even giving us a table where my team/ supporters can meet.  Just look for “The Lew Crew.”  We’ll be there between 9:30am and 10am or until the actual walking starts, at which time, come stroll with us! If you still want to donate, please go to my Walk page.

My husband says I need to be an advocate for kidney disease education so I’m leaving you with one kidney fact: Kidney disease kills more people than breast cancer and prostate cancer combined!  

Be well, everyone.  Hope to see you Sunday!