Monday, December 11, 2017

Top Ten Things I Wish I'd Known Before Donating a Kidney

Photo Credit: Perfect Strangers
Seven years ago I walked down a hospital corridor thinking I was about to change someone's life. I had no idea then just how much it would change my own. By the time I was waking up back in my room, my former left kidney was already being transplanted into a stranger's body. I assumed the surgery would be  the end of my donation journey. Turns out it was only the beginning.

Since that day, I've written a memoir, was featured in a documentary, have traveled the US speaking about living donation, and became a moderator of Facebook support groups for over 20,000 kidney donors, recipients and their families. 

The number one question I'm asked is why? which I attempted to answer in this post and in my book, LOST IN TRANSPLANTATION. The second most common question I get asked is, "What did you wish you'd known before donating?" The answer is long, so I made it into a Top Ten list.

1. No matter how many times you try to explain, people won't understand why you'd give a kidney to someone you don't know. Or even someone you DO.

When I try to explain why I donated a kidney I get some crazy looks. My best answer is simply because I became aware of a need and knew I had the good health and the means to help fill that need. Yes, I understood the risks. But after being on the receiving end of a benevolent ripple of goodness many times myself, I wanted to throw in my own pebble.

2. Be prepared for things that might go wrong, physically and emotionally.

Stuff happens. In my case, my friend who planned to drive me to the hospital had car trouble. Then my own car overheated on the way to the surgery center, so my ex-husband ended up driving me  all the way to San Francisco! Be sure to have a back-up,and a back-up to the back up. 

Every surgery entails risks, and it's paramount that you're fully informed of possible complications.  Beyond the physical, you need to consider how you'll feel if your recipient's body rejects your kidney, or worse, he or she dies. Once that organ is out of your body, it's no longer yours. Bless it, bless your recipient and their family, and bless yourself. You did a good thing and no matter the outcome, most certainly inspired others along the way.

3. People will want to help. Let them.

I think most donors are the type of people who are better at helping than accepting help. This is not the time to be a superhero. I wish I'd done a better job of asking friends to make meals or give me rides. I remain very grateful to those who popped in to bring me treats, wash my hair, or just check in.

4. The caffeine headache is worse than the incision pain.

A note to coffee drinkers; I ended up with a whopper of a headache because they wouldn't let me have my drug of choice: caffeine. You also might suffer from gas pain in your shoulders due to the surgeon inflating your abdomen to work around your internal organs. Walking helps to, erm, expel the errant gas bubbles. (Confession: I had someone sneak me a latte on Day Three and shazam! The headache disappeared.)

5. Yoga pants, Wet Wipes and Milk of Magnesia will be your new best friends.

Comfy clothes are best post-surgery, including a button-up shirt so you don't have to lift your arms. Baby wipes are a godsend for a quick "bath" until you can take a proper shower. Also, you won't be able to poop for like three days. God bless whoever invented Milk of Mag. You saved me.

6. You must give yourself time to heal.

I went back to work at our busy spa three weeks after surgery. I probably should have waited another week at least. You'll tire easily. You might be weepy. Be gentle with yourself. It can take six months for the affects of anesthesia to fully leave your body. Most transplant centers will follow you for a year after donation but you'll be required to monitor your own health after that. (I continue to advocate for lifetime Medicare benefits for living donors, something that we can all probably agree on.) 

Bonus: I lost 30 pounds after donating; they just fell off. I call that instant karma! :)

7. You will meet some incredible people.

I had no idea my personal community would grow to include thousands--yes thousands--of new friends and acquaintances who were eager to celebrate my story and share their own. I've heard from readers as far away as Africa, and Skyped into Q&A sessions with kidney groups on the opposite coast. I've met doctors, nurses, dialysis techs, transplant coordinators, recipients, donors, and people who are still waiting for a transplant that have made my heart swell with admiration for their determination and courage. My world has expanded one-hundred fold with gratitude for every single person I've "met" as a result of donating. You will go forward from your donation with a greater sense of purpose and deeper meaning in your life. 

8. You will wish you could grow another kidney to give away.

I figured I'd be "one and done" as they say, but once I healed up all I could think about were the 120,000 people still on that waiting list. I became a walking, talking billboard for living donation, speaking to anyone who'd stand still long enough to hear (or read) my story. In the time it took me to finish this post, fifteen people have died in the US alone because they didn't receive a life-saving organ in time. Think about that.

9. You will reject the word "hero."

Because you've seen the real heroes, the people who get up every single day to spend another 4-6 hours on dialysis, and their exhausted families and caretakers. Donating a kidney is a big deal, yes, but you will likely go on and live a normal life. Kidney disease is forever. Even those fortunate enough to receive a transplant will take a ton of daily medications and live with the ongoing fear of organ rejection or other complications.

10. Life with one kidney is pretty similar to life with two kidneys, but it will never be the same. 

And for that, you will be forever grateful

Lost in Transplantation: Memoir of an Unconventional Organ Donor

Beautifully rendered story of triumphant generosity
"Part memoir, part philosophy, part how-to guide for the altruistic organ donor -- it's an unconventional read by an unconventional woman. Ellie's story is compelling and heartfelt -- and her quirky humor, pink-tipped pigtails and transparent love light up every page. I read it in two sittings and emerged feeling cleansed, inspired and grateful. Ellie describes herself as agnostic, but I couldn't help hearing the words of Jesus at the Last Supper: This is my body, given for you...." ~~Kathleen Adams, Author & Founder/Director of Center for Journal Therapy 

Beautifully written...hugely compelling page-turner. Edwards skillfully weaves a tale proving that fact is often stranger than fiction. Again and again Edwards' skill as a writer demonstrates what a gifted wordsmith can do with a nearly-unbelievable series of real life events. She is imminently vulnerable and refreshingly relatable, which makes her story that much more readable--and the be the change that Edwards was after, may very well be what happens to the reader after finishing her book." Tom Franciskovich, Publisher; SLOLIFE Magazine


  1. I am a living donor involved in a paired exchange. We just learned today that it is a GO and the hospital is now working on scheduling the surgeries. This article is EXACTLY what I wanted and needed to see right now.

    1. How exciting for you and your recipient Kathleen! Let me know if you have any questions. If you're not already a member of the Living Kidney Donor Support Group on Facebook, I'm happy to add you. Wishing everyone in your paired donor exchange all the best!

    2. Beautiful. Amazing and helpful. I have a good friend who did this. She has no regrets.

    3. Beth I hope your friend and her recipient are doing well. <3

  2. I wish I had known how much I would NOT obsess over knowing the recipient of the kidney I donated two months ago. Grateful for the many perspective I’ve read on donor Facebook groups, I’m completely at peace with the fact that I may never know more than the small details I was told- the recipient is male, slightly older than me, and the transplant hospital. I realize my decision to give has such greater meaning in my life than I’d ever hoped and it wasn’t about having a new relationship or expressed gratitude from them. And though I may be contacted in the future by the recipient, it doesn’t weigh on my mind one way or the other. I just pray for their well being. Thank you for the awesome blog post. I hope I’m in the running for a copy of your book!

    1. Cathe I've heard from non-directed donors who are disappointed that their recipients aren't interested in any contact and although I empathize, I have to agree that not knowing is in someways a lifted burden. Like you, I simply wanted to know that my recipient was doing well.

      If you entered the Goodreads giveaway, you are definitely in the running. I believe they randomly select entries on Dec. 22. Thanks so much for your lovely comment and for stepping up to "be the change" we so need in this world.

  3. Sometimes, believe me, it is better NOT to know your recipient.... when odd things happen to them, you are in a frenzy....

  4. I donated a kidney to my brother May of 2001. I was never nervous or anxious about donating. In fact, i was excited to get the surgery started!! He now is in need of a new kidney. But it gave him 15 years of life in which he got married. Him and his wife welcomed a little boy into the world who is now 8 years old. I would trade places with him in a heartbeat if it meant he could live life without everything a person on dialysis has to endure. I love him that much!!! Hopefully he will find someone that matches with him soon!☺

    1. Rachael thank you for sharing your beautiful story. That is one lucky brother.