I am actively searching for a live kidney donor to share a lifesaving gift with me. Are you that person? If you’d like to skip my story and go straight to the info about how to become a donor, click here. You’ll need my name and birthday (Crystal Jones, 3/2/84) in order to fill out the initial questionnaire. Otherwise, read on to learn a little more about me.
Did you know that there are over 130,000 patients on the kidney transplant list, waiting for donor kidneys? People are waiting four and five years or more for this life saving gift, while fighting for survival on dialysis. Here’s the amazing part: If only 1% of eligible adults, between the ages of 18 and 70, were to become living donors and give a kidney – we could wipe out the waiting list three times over. There is a great need, but it is a need that CAN be met!
My name is Crystal Jones. I am a 36 year old married nurse with two children. I was born with Polycystic Kidney Disease. PCKD is a condition in which the tiny filters inside my kidneys have bedazzled themselves with cysts. Large cysts, tiny cysts, flamboyant cysts on top of other cysts, its a real kidney cyst party in there. Every new cyst that shows up to the party means that there’s one less functioning filter to do the work in that kidney, and as each cyst grows it destroys or impairs the healthy filters around it. The cysts started out microscopic, just wanting to avoid mediocrity and perhaps add a bit of glitter to an otherwise un-glamorous organ, but over time the bedazzling has gotten quite out of hand. At this point my entire abdomen is taken up by two giant bubbly kidneys that have slowly, one filter at a time, forgotten how to do their original organ duty which is basically to make pee. I know, I know, skipping a few trips to the bathroom doesn’t sound so bad to most people now does it? Actually though, it can be very dangerous. If kidneys don’t filter blood and make urine, you can become quite sick. Toxic levels of waste build up in your body and you can die from this without dialysis or a donor kidney. That’s where I’m at. I’m on the renal transplant list at Mayo Clinic in Jacksonville Florida, and the transplant team there have encouraged me to find a donor.
These failing kidneys of mine have brought me on quite a journey through the years, and along the way they’ve taught me lessons that I consider to be some of the greatest gifts in my life. For that reason, I consider myself among the luckiest of humans, as I have been given the opportunity to learn and grow in ways I likely never would have imagined had I been given ordinary healthy (read: boring) kidneys. I savor countless perfect moments in each and every imperfect day, and I’ve found that this sorely flawed world we all share is nevertheless ripe with both beauty and purpose. Would I recognize that beauty, if I had no darkness to compare it to? Would I be able to see the perfection wrapped up in the mess of chaos, if I hadn’t been given a perspective from this illness? I can’t say how different things would be if I never became sick, but I do know that the grief of this struggle has brought with it these great gifts as well.
These impaired kidneys have given me a glimpse into what is truly important in my life. I walk around with an unshakable knowledge of where my true treasures lie. I recognize these treasures in my children, in my family, and in the interactions I share with my patients and with the world around me.
When my son laughs, this pure beautiful sound comes bubbling up from the depths of his soul and I have to stop and catch my breath because I can almost see in his dancing eyes, the heavenly gem inside him from which the laughter resonates. There is a confident kindness that radiates from my daughter in the way she solves problems. I don’t know how it came to be, this bright strength in her, but its there and she shines on me much more than I deserve. There are moments in the early mornings, when my family is stirring up out of sleep and moving into that busy state that tends to chase us through our weekdays. These moments are filled with school folders and forms to be filled out, hair to brush, and socks to be found. We’re rushing and grumpy and tired and ill, but if I stand for a moment just still enough to breathe it in, all these ordinary weekday things twirl together into a symphony of life and I know, in these breaths of stillness, that inside this chaos is a priceless masterpiece, more important to me than anything I could ever create or possess. I want more of that! These moments, that laughter, the beautiful chaos and wonder of living, these are the things I want. These are the reasons I’m searching for a matched kidney donor. The gift of a new kidney would mean so much more to me than the restoration of my health. It would give me the chance to witness and savor many more of these magical mundane moments that make life the most sacred gift of all.
My husband and I were dating when I first found out about my kidney disease. We didn’t know what or how much impact the diagnosis would have on my future health, much less our future together, but learning about the disease caused me to begin taking stock of things. Knowing about the uncertainties helped me to recognize and become certain of other things. I suddenly knew for sure that the decisions I made and the intentions I held were the foundations that would shape my future. I knew, even back then though I couldn’t quite verbalized it, that this man I was dating, with his gentle strength and laughing eyes was the one I wanted in my corner, standing beside me on the uncertain journey ahead.
My husband is a loving partner who I am endlessly and deeply proud to be paired with. I am so grateful for our partnership, for the family we have created, but also for the team we have nurtured it to be. My husband loved me before I was anyone worth having, before I had anything at all to offer, and he loved me without asking me to be anything other than whatever it was he found in me the moment we first met. I believe it is because of this accepting untethered love that I was finally able to figure out, for myself, without any outside expectations or pressures, exactly what and who I wanted to become. I cannot express to you the kind of treasure that has been in my life. He gave me then, and gives me still, all the room I need to grow, and all the love required for blooming.
He gave me a porch swing for one of our early anniversaries. We lived in a different house back then and it didn’t happen to have a porch, so for us it was a yard swing, and what a beautiful one at that! We set it up under a tree in the corner of our backyard. We used to sit on that swing and talk for hours. We would look up at the stars and dream. We liked to think we had a view of the future from that old yard swing, and we would bedazzle and rearrange that future together to our hearts content. Many an idea was born in that small corner of the yard on that beautiful piece of earth, and in fact, that’s the exact spot where I decided I wanted to become a nurse.
Knowing only that the future of my health was uncertain, I desperately wanted to contribute, to do something more. I believed, and my husband agreed, that I could be of use in this way, despite and perhaps even because of my own health concerns. At that time my kidney function was just below normal, and we had no idea how quickly it might drop or if it would stay borderline forever, but the mere fact that it could get worse was incentive enough for me to jump in and not waste time.
So I went back to college when our kids were two and four years old. It took several years and countless sacrifices by every member of our family unit, but in the end I proudly graduated as a Registered Nurse. Looking back I wonder if I would have done it at all, if I didn’t know about the PCKD. Maybe I would have eventually gotten there regardless. I’m not sure, but I certainly found a drive and a determination to push forward that would not have shown up for me had I not felt the weight of a potential expiration date on my health looming in the murky unknown of the future. I am so grateful to have remained healthy enough during those years to use my renal disease as a motivational tool to shape my life with the very thing that threatened to derail it.
Even before I graduated with my degree, I set out with the intention of learning and growing as much as I could. I took a job as a Nurse Tech where I could work in the hospital alongside experienced nurses everyday and I soaked up as much as they’d willingly teach me. I stayed on that same nursing unit after I graduated as a new RN and continued soaking up the knowledge and wisdom of adult-ier nurses who actually knew what in the world they were doing. It was hard and it was messy and I absolutely loved it. I even had the chance to go with some colleagues on a medical mission to Belize! I knew if I didn’t go then I’d regret it when my health was worse and I didn’t have the option to go anymore. I’m so glad I said yes to that trip. I have memories of the people I met there, the struggles that they faced daily, and the simple acceptance and quiet determination with which they faced their challenges.
In the months and years after becoming a nurse, I set about with my still quasi functional kidneys, to move my family and my career forward as best I could, while I still could. I picked up overtime shifts and worked on committees. I said yes to new positions in order to learn and grow from them, and my family rarely saw me. I made, with support from my husband, a difficult choice to work an inconvenient weekend schedule. My husband and I both would have to work harder, on overlapping and opposite schedules, me taking 12 hour shifts Friday, Saturday, Sunday and Monday, and him working Monday through Friday. It was difficult, and we struggled at times but we knew what our intention was and so we made it happen. I don’t regret saying yes to that position. Ultimately it improved my families lives tremendously and is responsible, in no small way, for some of our greatest family experiences, and even for the house we live in today. It allowed us to travel, and to show our kids different views and perspectives on the world that we never could have given them without first putting in the work during all those overtime shifts.
At the end of 2018, my kidney function had made it clear that I would need to slow down. The forward push in my career was over for me and it was time to fall in line with a gentler schedule that I’d be able to maintain as I got sick. As my Nephrologist began working on getting me ready to be listed for a transplant, I was working on finding a new job that would allow me to switch my focus toward my family and my health while still allowing me to make some sort of positive impact on the world around me. I found what I was looking for in a Hospice nurse position.
I couldn’t possibly love hospice nursing more. I have the privilege of meeting, on a daily basis, heroic humans who have fought battles the likes of which most of us will never see. I get to sit beside them and learn about who they are, where they come from, what they’re most proud of and the things they most regret. They tell me truths about times when I was not yet born. I hear stories of places that I’ve not yet seen, and I soak it all in and am grateful to be trusted with those treasures. I am able to provide comfort and friendship to these people and in return I’m allowed to stand beside them and provide some measure of comfort during this last leg of their journey. I am truly privileged to bear witness to such beautiful things and I receive much more from these people than I could ever provide to them.
The intangible things I have learned on this journey with two wonky failing kidneys are too numerous to detail here, but as a theme I’d say that they’ve taught me to see. To truly see. They’ve taught me to look around and take it all in, the sights, smells, and sounds and the very heartbeats themselves, and to see, to truly recognize the rare and priceless things that exist in this very moment, right now.
I was officially placed on the kidney transplant list at Mayo Clinic in Jacksonville in November of 2019. I want very much to adopt a new kidney. I need a live kidney donor and I don’t ask for this lightly. I know what sort of sacrifice it would be for someone to willingly put themselves through surgery in order to give me this life saving gift. While I can offer you absolutely nothing of earthly value in return for such a monumental gift, I can tell you with absolute certainty that I will love that kidney and treat it with the reverence it deserves. I have grand plans not only to travel the world with it, but also, and more importantly, to cherish the beautiful moments that are hidden in daily mundane tasks. It wouldn’t be lost on me, this gift of life. It isn’t now, and it won’t be then.
Please share my story. I don’t know how far away my donor is, but I know that you can help me find them by sharing this post far and wide. March is National Kidney Month so I’ll be posting several times. Please share these posts each time you see them and help me find my match!
Now, if I am lucky enough to get a new kidney, and I believe one day I will, I promise to let the donor help pick out the new kidneys name. We can even do an open adoption, where I tell the kidney all about its birth mommy or daddy, and we can have yearly transplant day parties where everyone can celebrate together. However, if you prefer your privacy I can respect that as well. Either way, just know that I think of you every day. Even now as I begin the search for my match, I think of you often and I wish you well. I wonder how I’ll find you, or if perhaps I know you already. I hope today finds you well, wherever you are. And if you’re willing to donate and you learn that you’re not a match for me, I hope you’ll consider donating to someone else. There are so many people who are struggling with kidney disease, many of them more sick than myself, and some who don’t have nearly as much time to wait. This is a struggle shared by many people of all ages, and you may very well be the answer to someone’s prayers!
Learn more about becoming a donor by clicking this link to the Mayo Clinic’s website.
You’ll need to enter my name and birthdate to see if you’re a match:
Crystal Jones
3/2/84
😢No words, just prayers & thankfulness for the gift I pray is coming soon. 💞