Jim’s Story

 

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…

jim scar

 

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. He can soon travel back to the UK to visit his mother. 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:

  1. After surgery, your remaining kidney enlarges and you return to 75% of the kidney function you had before.
  2. You only need roughly 35% of your current kidney function to lead a perfectly healthy life
  3. 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)
  4. The life expectancy of donors is longer then that of non-donors.
  5. The success rate for donors at Jackson Memorial is 100%. It’s about as dangerous as getting a tooth pulled.
  6. The recipient can almost immediately return to daily life without the massive restrictions of dialysis.
  7. 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.
  8. 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).
  9. Most travel and all medical expenses are covered for the donor.
  10. 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.

Last but not least, I have to take a moment to thank my love, Robin. She slept next to me in the hospital, kept my booty from hanging out of my gown, yelled at the staff to make sure I was properly medicated and fed, gave me a voice when I was too tired to use my own, and basically is and always will be more then I could ever ask for in a partner-in-crime during this wonderful adventure we call life. You show me every day what “To Blave” is. I love you!

 

4 thoughts on “Jim’s Story

  1. My family and I have known the Daniels for 25 years; our children grew up together and Jonathan is my husband’s best pal. For four years, we have watched Jonathan’s struggles waiting for a kidney. He, Barbara and their daughters have been nothing short of amazing in dealing with the demands and stress of seeking a donor and staying healthy until one was found. Jim, you are literally a life saver and we are so very grateful that you stepped up. Your story is a testament to generosity. Our deepest thanks to you and Robin for responding and following through with this journey. We would love to meet you both one day. (If you haven’t been to the “Pub by the Sea” at the Daniels, you haven’t yet lived!) With deepest gratitude from your new friends, Nancy, Dave, Amy, Gretchen, and Douglas Thomas.

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  2. Jim, what an answer to prayer you have been to the Daniels family, and to all of us who love them. I pray that yours and Jonathan’s story will cause a mighty domino effect of selfless giving and joyful receiving! Thank you for following through in such a tangible and life-changing way on your desire to fight kidney disease. With great respect and appreciation, Barb Ingram

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  3. I am so happy and inspired to read your story. Thanks to “Kidney Stories” on Facebook, I have come across your page.

    My husband, JR. is 30 years old and has been on dialysis for 4 years. He was born with Alports Disease and has been affected by kidney disease his entire life. By 16, he was in full renal failure and began dialysis for the first time. He was blessed with a kidney from his mother which lasted him 11 years.

    I am pursing the Living Donor Exchange Program – I am completely willing to donate and we are both blood type O. However, they have told us JR has too many antibodies and we are not compatible. I am almost done with the testing for paired donor and am praying this brings us his kidney!

    In the four years we have been together -dating, engaged and married last summer ~ we have never had a dialysis free life together. I can’t wait for the day that all changes.

    I am a huge advocate for bringing awareness to kidney disease, organ donation and kidney donation. I write almost daily on our Facebook page http://www.facebook.com/akidneyforjunior if you are able to check it out.

    I am inspired by your vision – and have a very similar goal and outlook as you. Please contact me if there is anything I can do to help further; network with you, etc.

    Wishing you all the best,
    Felicia

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