I still remember laying on the back seat of the minivan next to my best friend in the world, my cousin Jacob. It was 5 in the morning, we were 10 or 11 and we were tagging along in the hopes of being able to stop at the store on our way back. Our mothers had said there might be time after our grandmother’s appointment. It was super early for us but we were in desperate need of some reinforcements for our days long miniature battle strewn across the basement floor. My grandmother was in the midst of a battle of her own. Her kidneys, ravaged by undiagnosed high blood pressure, had completely failed and this was the beginning of years of three times a week trips to the dialysis clinic. We watched our spitfire of a Granny’s life become engulfed by this battle, some days good, some bad, none the same as before. After over 10 years of this, thanks to a tiny box checked on a kind stranger’s drivers license, my Granny’s name finally came up on a list far longer than it ever should be. And for the final years of her life, we had her back.
For most of my life, I’ve been waiting for my moment to wade headfirst into this battle against kidney disease. Just last year, a Facebook friend liked a page called, “A Kidney for Jonathan Daniels”. I looked it up, saw I was a blood-type match, and sent a message asking how I would go about getting tested for compatibility.
Just over a year later, after innumerable sticks with a needle, giving countless vials of blood, and 2 trips to Jackson Memorial Hospital at the University of Miami, here’s the final result…
Pretty awesome, eh? Almost fully healed after only 4 weeks (at the time of this picture). I have kept this mostly to myself and my family until now because I have no desire to wear this around like a merit badge and proudly show it off like my dog does when she trots over to me with her latest find. But it’s time to share my story for a number of reasons. Most people can’t understand why I would give my kidney to a stranger, but this is an illness that is close to my heart. I also strongly believe that everyone should do what they are capable of. Some can give their time, some their money, some their mentorship, and for a small number of us who are healthy enough, we can give a part of ourselves. I gave a kidney I didn’t need and gained a life-long friend. It cost me a couple weeks of my life and some minor discomfort and the Daniels’ get their father and husband back. Jonathan doesn’t have to sleep connected to a machine for 9 hours every night. His wife, Barbara, won’t have to keep track of a list of over 15 medications. What I gave up is so small in the scheme of things and the experience has been more amazing then I ever could have imagined. Jonathan and I both want to get the word out about this life-saving/live-giving procedure. Too many people have misconceptions about living organ donation, too many people sit on waiting lists for far too long, and if we can help just one more person get matched with a donor, any amount of effort on our part is well worth it.
So, in that vein, here are the Top Ten Little-Known Facts about Living Kidney Donation:
- After surgery, your remaining kidney enlarges and you return to 75% of the kidney function you had before.
- You only need roughly 35% of your current kidney function to lead a perfectly healthy life
- Your diet and daily life after the surgery doesn’t need to change at all (though maintaining your current weight and avoiding ibuprofen are important)
- The life expectancy of donors is longer then that of non-donors.
- The success rate for donors at Jackson Memorial is 100%. It’s about as dangerous as getting a tooth pulled.
- The recipient can almost immediately return to daily life without the massive restrictions of dialysis.
- A kidney received from a living donor is capable of lasting the rest of the recipient’s life, whereas a non-living donor kidney is likely to last only 6 years.
- If I were to have a freak accident and lose my remaining kidney, I would automatically jump to the top of the waiting list for a new kidney (though I haven’t seen any cases of this being necessary).
- Most travel and all medical expenses are covered for the donor.
- If just a small percentage of the eligible candidates were willing to donate, we could virtually wipe out the current waiting lists.
We don’t know what our next steps are, but this is just the beginning of our journey in the hopes of connecting as many living donors and recipients as we can. For now, if you have any questions, need someone to talk to who knows what you are going through, or would like to inquire about being a living donor, please contact us right away. We’ll keep you posted as we formalize the plans for our efforts in the future, but for now all we want is to do is get the word out in the hopes of helping others experience the same amazing journey we’ve been able to be a part of. Stay tuned for Jonathan’s side of the story.
When I started this blog, I was concerned about what the reaction would be. Obviously this is a subject that people have a lot of emotional ties to and I had no desire to be inflammatory or divisive. That said, I had come to the point where my need to live authentically far outweighed my need to avoid conflict or my fear of others’ disapproval, so there wasn’t much of a debate to be had. It was time for me to come out of the closet.
I think any time someone comes out of the closet, regardless of the closet, they are risking losing some relationships. This is never the intention, but its always a possibility. I know that some might find this to be an impossible hurdle to overcome and that saddens me. But if the result of me being honest about who I am is that you reject me, then what have I lost? And those that stand by me are my true friends because they know and love who I really am, not what they want me to be.
I know that there are those of you that are still searching for a way to respond because you wholeheartedly disagree with me. This might take a while for you to sort out, but I’m okay with that. In the end, it isn’t a requirement that you agree with me. I just hope that you don’t equate accepting me as a person with endorsing all of what I believe. We can respectfully disagree and it doesn’t have to restrict our relationship. Sure things might look a little different then they used to, depending on the context of our relationship, but authenticity is the life blood of all healthy relationships.
Overall the response has been amazing. I really appreciate all of you that have commented, emailed, called, or found other ways to engage with me. The feedback and conversations have been so great, much more so then I had hoped for. I’m excited to continue the conversation. Either way, there’s certainly no stuffing me back in the closet now.
***Update: In my final edit of this post, I didn’t catch that I missed one very important word in the title. I knew something was going on when I saw that I had more hits in the first three hours then ever before in a full day. Sorry for the confusion, but hopefully most of you understood that I was referencing the agnostic closet. I must say though, that this is my favorite typo of all time!***