Donor Stories

I’m Steve. I donated at age 54. My wife was on dialysis for 4 years and I wasn’t a match. Then the kidney chain came into being. We were part of the first kidney chain on the West Coast through UCLA.

The kidney chain is a way to save lives quicker and actually save 2 lives. If I’m willing to give my kidney to my loved one, why wouldn’t I be willing to give it to another person’s loved one and my wife gets a kidney from someone else’s loved one? It’s paying it forward. Someone who got a kidney, his wife donated to my wife, then I donated to a man at Stanford, then his wife donated to a man in NY and on and on. The result is getting a living kidney (which is better than a cadaver kidney), getting it much faster, and saving lives.

We can live normally with one kidney. Donating the kidney hasn’t changed anything I do. I still work full time, play in a rock and roll band, do sports, and travel! We have become good friends with the couple that I donated to which means the world to me.

I am 56, the biological mother of five, stepmother to another five. One day a neighbor told me his partner had received bad news he was going to need a kidney – he had a hereditary disease where his kidney developed tumors. I said, “Oh that’s terrible, put me on the list. If we are a match, he can have one of my kidneys.”

I had only met Mark once in passing. Well lo and behold, I was a match and we shared a successful transplant a little over a year ago. During the time leading up to the transplant I got to know my recipient very well, and feel blessed for all the wonderful laughs we have had together and those that are in our futures.

I rock with one kidney – six, maybe eight weeks after my transplant I jumped a plane to England by myself and went to surprise my son in Nottingham. It was a great week! After leaving the hospital I never even needed to take any pain medication, it was way easier than I ever thought. I barely missed a beat, a few days of rest and away I was. I would do it again if it were possible.

Since my donation four years ago, I’m actually getting in better shape. Down 20 pounds, I’m nearly the same weight as when I was married 21 years ago. I’ve started jogging – with over 400 miles logged this past year. I will running in my first race next month in Colorado Springs to support our city’s food bank. That’s how I currently Rock 1 Kidney.

I’m pasting my story here if you’d like to read and be encouraged:

https://www.facebook.com/notes/jay-julian/a-donors-journey-and-his-call-to-action/10152552268731071

On July 19, 2013, just before my 30th birthday, I donated my left kidney to a toddler named Teddy.

My surgery and recovery went even better than expected, and I’ve been rocking one kidney for a year now. I’ve been chasing my two sons around, watching gymnastics practices, cheering at t-ball games, going on bike rides, playing at playgrounds, and swimming. I’ve been camping with the family and going on dates with my husband. I’ve been building and growing my own business, and volunteering for several organizations.

I ran an obstacle race three months after surgery, and have been pushing, pulling, and lifting heavy weights. I joined a novice crew team this summer, and I just signed up and have been training for my first CrossFit competition. I can say with confidence that I’m much stronger than I was before my donation; having one kidney has not slowed me down one bit.

http://akidneydonorsjourney.weebly.com/

First, I want to say how grateful I am to share our story. I hope that it would inspire just one person to become a living donor. It’s how one helps another. If not me then who? In a split moment in March 2012 my boyfriend of 9+ years was diagnosed with end stage renal failure due to hypertension. Boy, life can change in an instant. First the diagnosis, then 100% recovery! I was the first person to screen and the first person to match.

I just knew when the phlebotomist asked me who I was screening for that I would be his match. Sure enough, the transplant was December 18, 2012. Since then both of our lives are normal and he is not tethered to a machine sucking the life out of “us” anymore. I don’t have to see him endure the pain and discomfort it brings. The only thing he complains of since receiving my kidney is that he feels like crying a lot – he says it’s the female hormones left over in the kidney I gave him!

Ask yourself, if not you then who?

— Sheila Hines

I donated just over 11 years ago, on June 25, 2003 to my oldest brother. In order to donate, I spent just over a year losing 110 pounds to achieve the weight the surgeon said I needed to be at. It was the skinniest I have ever been in my adult life!

At the time of the donation, I was the mother of a little boy born after five years of fertility treatments with three different doctors. The way I rocked my one kidney happened just under two years later. I found out in May 2005 that I was pregnant naturally (and from “just one time”) and gave birth to a healthy baby girl in December. She is a miracle in so many ways: a tremendous gift after 15 years of infertility, the first girl born in my husband’s family in over 112 years, and she shares a birthday with my kidney-recipient brother having decided to arrive 11 days early! My joke to the transplant surgeon was that he should have charged double for the surgery since we got two great things out of it, a healthy brother and a wonderful daughter.

Just last week, my brother died of apparent sudden cardiac death, entirely unrelated to the kidney transplant. Knowing that I gave him those extra years of life and knowing he gave me my little girl will allow me to keep rocking my one kidney even through my grief process and on for the rest of my life.

— Susan Bentjen

My husband Bryan and I are celebrating our second transplantiversary on Sunday – we’re both doing great! It was moving to reflect on ways I’ve been “rocking one kidney” in the two years since donating for today’s Huffington Post. As I write in the essay, I am so moved by the stories I hear from kidney donors. Please feel free to send stories of how you are rocking one kidney since donating to possibly inspire others to do the same – we need to show that kidney donors can have happy, healthy lives after surgery! Much love to you all!

http://www.huffingtonpost.com/jen-reeder/how-ive-been-rocking-one-_b_5585544.html

A phone call in June left me speechless. One of my best friends dropped a bomb on us that at the age of 33, he was being placed on the kidney transplant list. My first instinct was that he could have one of mine and in talking with him, we were the same blood type. He brushed it off that the testing process was just more than simply matching blood type and the likelihood of two complete strangers (genetically) matching. I did it anyway. The donor counselor called me a few days later and asked me what my relation to him was and I simply said that we are good friends. She chuckled and said that I matched better than anyone in his family and was I willing to move forward with the process? Of course, without a doubt and yes.  In hindsight, it’s not that shocking that we matched as everyone swears we look like brothers. When we met in graduate school, many people mixed us up and his dad even mistook me for him in a group photo.

It was the greatest honor that I could have in helping him.  I would do it over again a million times.

In September, we met collectively with the physicians that performed the procedure and worked on our schedule so that it wouldn’t conflict with anything. We completed the donation on December 11, 2013, and I was out of the hospital on December 13, 2013. It was a smooth surgery and besides a little gas and discomfort for the first couple of days, there have been no complications. The doctors stated that when they implanted the kidney, it immediately started working and filtered about twice as much fluid as expected in the first few hours. I was off work for two weeks and then transitioned back to full time over the next week. Having the surgeries around the holidays and New Year’s made sense because there was some downtime already built into our schedule.

Currently, I am an athletic trainer for multiple sports at a major university and my days are no different than before the surgery. I am able to perform hands on work with all of my athletes without a problem. I was able to return to full workouts for myself about a month after the surgery as well as chasing around two beautiful little girls. My workouts include resistance training, jiu-jitsu and different types of cardio. The newest goal that our group of friends has is to complete a relay race that spans 200 miles. Most people don’t even know that I had the surgery just a few months ago. Except for the guy who has a new kidney and is enjoying life with his wife and beautiful little daughter too.

http://www.freep.com/article/20140513/COL38/305130030/jeff-seidel-michigan-state-trainer-kidney

What I gave, what I got!

I’ve been told that I am a risk taker. I also have been told I overthink things. Without over analyzing this, I agree.

My donation journey stated with my parents calling me and asking if I had gotten a letter from my Mom’s first, and only, cousin. I unsurprisingly had not and remember being in her company at a family event many years before. Hmm, “no, what was it about … does she have a new book coming out about how different cultures observe and celebrate death?” I asked. Without hesitation, I did what I thought we all would do, right? I thought, of course we will all be tested, cross our fingers either to be “chosen” and then find out more or, do the right thing and pray we weren’t THE match.

About a week after having the match testing blood work she called and said “I’ve got good news and bad news. You are the best match.” It was important to her that I make a decision before the end of the weekend. All I remember is walking the neighborhood and wondering what I had agreed to. It was Halloween.

I was and still am fascinated at the whole idea of organ donation and how a part of one person can function in someone else. How amazing that I could be that person to make such a difference in this way. So I entered the testing phase of myself physically and mentally. Scared and excited. Laparoscopic or open? Just what is the success rate when EVERY transplant center claims to be the best in one area or another? Have I lived in the DC area too long not to believe that? I was probing and being probed to confirm that we had enough in common. I had entered a cross-continental kidney dating program between California and Maryland! Now, in looking back, I realize I did not question the medical community or the value of the Hippocratic Oath like I sadly do today. It’s interesting that the possibility of any complication didn’t really enter my mind. I KNOW it entered the mind of my parents and my Dad being a formidable nephrologist and solidly on the side of prevention whenever possible vs. surgery. Certainly a difficult and prideful position to be in when the patient is now his child.

As usual, the biggest issue was between my ears. The questions I got from the few I shared what I was in process of doing asked “how could you?” and “WHY”? Whereas I kept asking, “why not? This choice of mine was to extend the life of another. To GIVE life. I had many conversations with myself to question just what does this say about me? Is this in my religious faith as good or bad? How long will I be unable to work and can I afford that as a single woman and a solopreneur? Basically, I KNEW my kidney would do its thing (previously untapped kidney pride) but how will this “adventure” impact me?

No matter how wonderful, or scary, or physically testing, or life changing for me and my cousin and loved ones, or impressive (even to myself) this is, it is surgery and the removal of an organ and life altering! I asked my nephrologist how this would change my daily life. I’ve always had a more than average aversion to public toilets. I’ll hold it longer than a well-trained Labrador if I have to. After going over all the details, and bladder and kidney health, he also suggested: do not get car jacked with a gun pointed in my remaining kidney, no kickboxing for the same reason and for a while post-surgery, no sit-ups. I have abided strictly to his advice and have never asked how long to continue not doing sit-ups. It’s closing in on 15 years.

My recipient insisted that I name my kidney so that she could warmly welcome her. During one of my pre-surgery swims (self-prescribed to be in the best shape possible), I decided on Old Yeller. I had no idea just how amazing Old Yeller was. Old Yeller and I have been in touch infrequently since. I often wonder why. I know that her body welcomed the new chance at a healthy life with some initial difficulty from the anti-rejection drugs. She eventually moved to Brazil to continue her psychotherapy practice and continued writing. At least I think so. The last time we talked, she said that she was doing well but dealing with some diabetes and hypertension and that the healthiest thing going for her was my happily gurgling kidney. We shared some laughs and I was thrilled to hear her voice. A mere two weeks after that call, I got a mass email indicating she died while visiting friends in New York.

WOW! How wonderful for her to have had almost 15 more years since surgery.  On the other hand, for me it was also a sucker punch. This explained the weird phantom pains in the location of my removed kidney since we had just talked. It’s hard to explain this type of loss and I’m curious what other donors might have experienced. What had my other kidney been up to? What were her dreams? It’s fun to get snippets from the responses on that mass email and I cherish them.

While my kidneys have lived separately, it is this that has strongly re-energized me to continue in some way to give back to the donor world. I am still searching for just the right match. I’ve only stuck my toe in whereas I know I have much more to offer. Meanwhile, I stand taller, am impressed with myself and thrilled I said “yes”. I’ve been told I am a hero which is not how I see it. No superpowers here and I’m certainly not a type of sandwich. It was a selfless decision from not my kidney but from my heart, not for the thanks or want of recognition. I gave myself inspiration and an indescribable feeling of self-worth. I thank the recipient for that honor.

What an inspiration to us all – 34 years and going strong! Many thanks to Michael Gaudet for his passion for kidney donors and recipients! Visit his Facebook group “Kidney Transplant Donors and Recipients” to share information with other people on the kidney transplant journey.

http://www.huffingtonpost.com/jen-reeder/man-with-34yearold-transp_b_5035981.html