Kidney For Kathy: The Journey Begins

I’m paralyzed by the gravity of this topic.  I’ve started to share this a thousand times over the past six months but haven’t gotten past the first few lines.  I’m struggling to find the balance between hope and optimism, and the heaviness of this reality.  I’ve come at this from several different angles, and when I step too close to it, I start to swim in these torrents of fear and uncertainty, but when I don’t get close enough, it becomes understated and loses all urgency.  Today, I will try again.  Within this swirling storm of feelings, I need to get this out, in whatever way I can, despite all its twisted complexities.  So pull up a chair, my friends, and bring your favorite beverage.  We might be here awhile.  Down the rabbit hole we go!!!

My mom needs a kidney transplant.  She has Polycystic Kidney Disease, and it’s progressed to the point that her body is unable to function properly.  We’ve known about the disease itself for quite some time now, ten years at least.  However, knowing about it did nothing to steel us for the news of kidney failure.  Perhaps it should have.  Perhaps we should’ve seen that coming, but there’s no precedent in our family for this sort of thing, even though others who’ve come before us have lived and died with the same affliction.  Until now, no one has progressed to the point of needing a transplant, and so we just assumed, in blissful ignorance, that mom would follow suit, living with but never dying from this hereditary disease.

Many of you already know my mom, but it’s my hope that this post reaches far beyond those of us who are already in her life.  So in case you’ve never had the privilege of meeting this amazing human, let me introduce the two of you.

My mom Kathy grew up in New Mexico, where she met my father, who she then followed around the country as a military wife, with myself and my older brother in tow.  She sacrificed in ways only other military spouses could know, focusing her life day after endless day on the monumental task of raising a family and holding together a household.  She was insanely good at it too.  She really should’ve worn a cape.  {Note to self: make mom a cape}  She made a hot breakfast for my dad and us kids, every single morning.  Seriously.  I know.

She’s short, not that it matters.  I only bring it up because I remember how she would pull out a kitchen chair every morning as my dad was heading out the door, climb up onto it, and give him a kiss.  It all makes more sense when you know that she’s short.  Oh, and he’s tall.  Obviously, because I had to get my ogre princess stature from someone and it definitely wasn’t from my perfectly petite mama.

When my brother and I were young, my mom would bring forgotten lunch boxes to school, and ferry us to and fro.  She protected us fiercely, from everything and anything in this world that she saw as a threat.  More than once, she used her sewing prowess to whip together an outfit for me using only the materials from one of her own dresses.  Yep.  She did it all and there was a bottomless supply of hugs to boot.  She didn’t work outside the home, but man oh man did that woman work.  I still don’t know how she kept the house so neat.  She was always improving our lives, and learning new things.  She learned how to bake bread using a “starter” whatever that is.  I don’t understand it at all, but I remember a disgusting jar of congealed nothing in the fridge, from which she would conjure all manner of breads and buns and cinnamon rolls.  That’s not the only cape-worthy feat of mothering I witnessed in my young life.  No, she was just getting started.  She could design Halloween costumes, and make all sorts of exotic meals that she’d learned from people she met at the various Coast Guard bases my dad worked at.  There was chicken stir-fry and chimichangas, homemade tortillas for fajitas, and even lumpia and pancit.  That last one has my spell check virtually convulsing.  I promise, those are not actual curse words, although I think they’d work quite nicely.   Let’s all try that out later.

Obviously I’m a big fan of food, but my mom’s talents aren’t confined to the kitchen.  She threw the most epic birthday parties known to twelve year olds.  I’m talking, face in a bowl of whip cream, scavenger hunts and games in the backyard, let me make my own birthday cake kind of parties.  You would never know that she didn’t really like hosting, because she was just so unbelievably good at it!

Back then I didn’t know what kind of cost was involved in all of those doings.  They just happened.  Now that I’m lucky enough to have a family and kids of my own, I can clearly see the sort of endless effort these things cost my mother, and I appreciate them all that much more.

Even now, my mom Kathy continues to grow and learn, never ceasing in her efforts to improve and branch out.  She’s currently learning to play the fiddle, and if you’re very lucky, you might even catch a glimpse of her lost in thought, with her head tilted to the side, and her hands flittering in some musical pose that she assures me is a note in vibrato.

She’s still a huge part of my day to day life, and these days my little ones are being blessed by her mothering magic.  There’s so much good that radiates from that woman, so much gentle kindness and genuine love.  She is the epitome of a matriarch, setting a high standard and a bold example for this family to follow.  She shows us how to love, and to forgive, how to encourage and gently lead.  My mother is a genuine example of the love that we should all strive to embody.

So world, meet my mother Kathy.  Mom, meet the endless interwebs.

Now that you’ve met, I’m sure you’ll agree: she doesn’t deserve to be fighting this fight.  This is not a disease born of bad choices or hard living.  This is not a case of one too many cheeseburgers, or a few too many drinks.  She is the epitome of good, and her life is a string of wise choices and kindness.  She doesn’t like alcohol, she’s never smoked, she watches what she eats, and she exercises regularly.  She has done all of the right things and I struggle daily to understand why we’re here.  I don’t know why she’s dealing with this life threatening beast despite all of those things, but I do recognize that it’s not about that.  It really never is.

As a nurse I’ve seen disease and disaster touch the kind hearted and innocent as often as the careless and callous.  I’ve watched it happen over and over, but this time it’s reached past my nursing exterior, and struck at the core of my life.  My mom needs a new kidney.  She’s on the kidney transplant list at the Mayo Clinic in Jacksonville Florida.  That’s unbelievably wonderful, and unimaginably awful, because a kidney gotten that way comes only after an organ donor dies.  Basically, we’re waiting for a terrible tragedy to birth a miracle.  I’m all sorts of snarled up about that fact.  I’m grateful for the advances in modern medicine that allow deceased donors to be a viable option for life. I’d like to be an organ donor myself when that time comes, and yet my heart is heavy because I know, have seen with my own heart, what it means for the families that have gone through tragedy and become part of a deceased donor story.  I can’t pray for that kind of tragedy, no matter how great the need, and make no mistake my dear reader, the need is increasingly GREAT.  The wait on this transplant list can be five years long.  Five years is unimaginably long, and it would mean dialysis and sickness and struggle the likes of which we haven’t yet known.

I will be grateful, no matter how or when this miracle happens, but I can only pray for a living donor.  I pray that somewhere out there, there’s a healthy willing person, with a heart of gold and a kidney to spare.  It’s possible; I know it is because it’s been done many times before.  Transplant surgeries with living donors happen every single day.

I don’t know who you are, Dear Donor, but I think about you all the time.  I wonder if today’s the day that you’ll hear about my mom.  I wonder if you’re reading this right now, and if you’re realizing that it’s you.  I pray for you, and for those around you, and it is my dearest hope that we find you soon, and end this eternal waiting and watching as my mom slowly declines.

When this post finds its way to you, I hope it wraps you up in love and that you feel, in the bottom of your soul, the kind of gratefulness that’s reverberating from the bottom of mine.  What a beautiful thing you’ll give to this family, what a gift you give to this world.  Yours is the gift of time.  It’s the gift of grandkids getting to sleepover at grandma’s house, and the gift of this daughter getting to spend more laughing lunchtimes with a mom who has so much left to teach me.  It’s the gift that encompasses more than any post on any platform could possibly hold, and I THANK YOU! I know you’re out there, and I’ve added information at the end of this post with links that will help you take the next step towards becoming that great gift.

Now, if you’re not eligible to donate, don’t walk away! There’s still a great need for you to be involved.  I know that the interwebs are inundated with cries for help and I don’t want to become part of the noise, but I do want to make sure this post makes its way to that one special person who’s meant to read it.  If you could share this with even just one other person, it would reach so many more people than I can reach on my own.  You could be the reason that this miracle happens.  You might be the only link between my mom Kathy, and her kidney donor.

In fact, I’d like to encourage you to be involved by offering you something small in return.  If you will take the time to share this post on Facebook, and comment “Kidney for Kathy”, I will enter your name into a drawing for a $25 amazon gift card.  So share away, and tell your friends to do the same.  The deadline for entering the drawing is Friday July 7^th.  I will announce the gift card winner on the Glittery Nurse Facebook page on July 8^th.  You can like my Facebook page to receive further updates about this journey, and you can also sign up for email updates by subscribing at glitterynurse.com.  If you’d like to help by hanging a Kidney For Kathy flier at your workplace or church, you’ll find information about that at the end of this post.

So that’s what I came here to write today: my mom needs a kidney.  It’s a huge heavy topic, but it’s certainly not the end of the story.  Before I go on, let me first say that it’s not lost on me that this is a big ask.  I know that it’s not an easy thing.  More than that, I know that this is not the most tragic thing happening in the world right now.  There are so many struggles, all around us.  People I’ve never met, and people I’m very close to are going through this and much, much worse.  I will try very hard to keep that in mind as I tell you the rest of this story.

I’ve inherited Polycystic Kidney Disease from my mother.  As I write all of these things, and as I watch her walk through this struggle, it’s impossible for me not to look to my own future and quietly wonder.  Last week I had dinner with my mom, and afterward I went home and my husband held me as I sobbed over the jeans she had been wearing.  They used to fit her well but that night when she stood up, they were just hanging off of her.  It’s a tiny little thing, a change that no one else even noticed because my mom is always well dressed and nicely put together (unlike me), but it was a change that represented so much more to me than a pair of jeans.  I don’t tell her that I cry over these things, but I see them, and I know.   I know what it means in the bigger picture of her health, and I see what it means for the progression of her condition.  And yes, I selfishly think about what it means for the trajectory of my own future.  Will I face this same struggle? And if so, how many more healthy years will I have?

I went with my parents to the Mayo Clinic when mom was going through her transplant evaluation, and I sat through many classes and listened intently to all the experts and transplant coordinators.  I learned about all the medications you take after a transplant and how they suppress your immune system so that your body doesn’t reject the donor organ.  You can’t garden because you’re susceptible to airborne fungus, you can’t eat at buffets due to a weakened immune system, and you can’t order salads from restaurants because you can’t ensure that the produce has been thoroughly washed.  Mom was completely bummed about the salad thing (I told you she makes great choices!) but my mind went to my career, my new career as a nurse, where I meet and care for sick people constantly.  What would this sort of thing mean for someone like me? What will I do?

Hopefully that’s not something I’ll ever have to know.  It’s possible that I will live and die without ever getting that far.  I’m trying to balance myself between careful preparedness and living my life unhindered by useless worry.  There is nothing to be done.  Well, that’s not entirely true.  While there is absolutely nothing I can do to prevent the progression of this disease, in myself or in my mother, there is something I can do.

I can make today count.  I can make someone smile today, and make the rooms I enter that much brighter for having been in them.  I can throw glitter in the face of darkness, and I can make this moment matter in my own small way.  In this way I count myself lucky to be faced with these battles, because they’ve brought me something I could never have bought or manufactured.  It’s given me awareness.  An awareness of this moment; the wind ruffling the leaves on the tree above my swing, the sound of my daughter squealing with joy as my son chases her around the trampoline.  I recognize that every single day holds endless possibility and that my life contains a glittering plethora of unexplored options and opportunities just waiting to be wrangled.  It has allowed my gratitude to grow.  I’m more aware than ever before, of the treasure that is this moment I’m living in.  It sparkles and shines and it’s the most beautiful gift I’ll ever be given: the gift of NOW.  I know, down to my toes, that these things are the most important, that these moments are the epitome of “the good ole days” and not a bit of it is, or will ever be lost on me.  Even in these dark struggles, there is brightness to be found.  I feel the value in these days, and I want to squeeze every last ounce of awesome out of them.  My literary friend Francie Nolan said it best:

“Let me be something every minute of every hour of my life. Let me be gay; let me be sad. Let me be cold; let me be warm. Let me be hungry. . .have too much to eat.  Let me be ragged or well dressed.  Let me be sincere-be deceitful.  Let me be truthful; let me be a liar.  Let me be honorable and let me sin.  Only let me be something every blessed minute.  And when I sleep, let me dream all the time so that not one little piece of living is ever lost.” – Francie Nolan, A Tree Grows In Brooklyn by Betty Smith

Bucket list shenanigans have already commenced, and I’ll write more about that in the days to come.  Don’t forget to share this post and comment “Kidney For Kathy” so I can enter you into the drawing for the Amazon gift card.  For now my loves, I thank you for spending this time in the rabbit hole with me.  Watch your step on the way out, and come back to visit soon!  You’re always welcome here.

With much gratitude and great hope,

The Glittery Nurse

 

Next Steps For Becoming A Donor

 

Let’s talk for a moment about next steps.  If you are interested in becoming a living donor, you need to go to MayoClinic.org/livingdonor and follow the links to fill out a quick survey that will tell you if you’re eligible.  After that, there’s a blood test to see if you’re a match, and if you are, there’s a week of testing at the Mayo Clinic in Jacksonville.  I realize that’s daunting, but you should know, that the recipient’s insurance will pay for the testing, as well as the medical expenses associated with donation.  Here’s another little factoid: if you’re eligible to donate, but you’re not a match for my mom, you can still give her a kidney through what’s known as paired donation.  It’s a fancy setup that pairs donors and mismatched recipients together until a chain of matches is formed.  All those involved, give and receive kidneys on the same day, gray’s anatomy style.  It’s really quite amazing!  You realize this means you could be starting a domino effect that changes the lives of several recipients who’ve been waiting for this life-saving gift.

If you’re interested in receiving a flier that you can hang up at work, church, etc. to help spread the word, you can shoot an email to kidneyforkathy@gmail.com.  Thank you friends!  I am so very lucky to have you in my life, and I know that together we can make this miracle happen!