In this article, Jen Gale shares her personal experience as a living kidney donor.
It wasn’t the acceptance letter to UC Santa Cruz, or the way I landed my dream job as a zookeeper, and it wasn’t all those lucky parking spots. It was a Facebook post that led me down a path that would answer prayers, save a life and give me a sense of fulfillment like none I had experienced before. Some may believe it was God. Others may attribute it to fate, chance, or maybe even to angels. I’m still undecided.
In July of 2016, I stumbled across a Facebook post with a photo of a child jumping into a pool, and a caption that read, “Simple things like a day at the water park with your cousins can’t happen on dialysis, unless you just want to sit and watch all day… #kidney4jeremy.” Jeremy is my adopted cousin’s 22-year-old son who I hadn’t spoken to in at least 15 years and this was the beginning of how I learned that as a result of kidney failure Jeremy couldn’t go on waterslides, eat French fries (major dietary restrictions on dialysis) or travel – three of my favorite activities.
After being diagnosed with focal Segmental glomerulosclerosis (FSGS) at the age of 15, both of Jeremy’s kidneys were removed, he was put on dialysis and eventually given a deceased kidney transplant. A deceased kidney transplant lasts an average of five years while a living donor kidney lasts an average of 15-20 years. Because FSGS has a very high rate of recurrence, it would have been a risk transplanting a living donor kidney under his circumstances.
At about five years into his transplant, he developed a staph infection (likely related to his low immunity as a result of the anti-rejection medicines necessary) and he was put back on dialysis due to loss in kidney function. The good news was that the FSGS had not returned and he was now a candidate for a living donor kidney transplant. Over the course of nearly four years, Jeremy and his friends and family put the word out and 22 people went through the testing process, but none were a match.
I hate needles and blood, I hadn’t spoken to Jeremy or his parents in years, and donating a kidney is an unnecessary risk that provides no benefit to the donor. However, I decided to fill out the anonymous online health questionnaire for “fun” … and I passed. I learned from Jeremy’s Facebook page that thanks to SB 1304 California employers with over 15 employees must pay an organ donor his/her full wages for 30 days. Also, Jeremy’s medical insurance would cover 100 percent of his donor’s medical. So I moved on to the next steps, blood tests and 24-hour urine collection. I passed again! I hadn’t told anyone, including Jeremy, that I had been going through the screening process and decided to remain anonymous for the time being. Thankfully, there is absolutely no pressure put on potential donors and you can back out at any point.
I took a break from the process and reached out to trusted family and friends. EVERYONE was surprised that I was considering donating a kidney and a few tried to convince me not to. However, it isn’t often that you can give to someone without expecting anything in return, especially a body part I had taken for granted all my life and technically didn’t need and that would allow him a world of freedom. I told my HR department about SB1304, which they hadn’t heard of (and has since been added to the employee handbook), and I scheduled the full day of testing at the UC Davis Transplant Center. It included chest x-rays, an EKG, blood test, CT angiogram, as well as meetings with a nurse, surgeon, psychologist and social worker. Finally the results were in, and even though we aren’t related by blood, I was a match!
I had many questions:
Q. What kind of scars would result?
A. Two 1/2-inch scars on my abdomen and a 4-inch scar much like a C-section.
Q. What if my remaining kidney failed?
A. Kidney donors are rigorously screened and kidney failure is very unlikely. If necessary, I would skip to the top of the transplant list.
Q. Would my health be negatively impacted?
A. No. After donating one kidney (50% of functioning kidney mass), the remaining kidney compensates and overall kidney function increases to an average of 75-85%.
Q. Would I have dietary restrictions?
A. No, but I could no longer take Ibuprofen (it is hard on the kidneys).
Q. How long was the recovery period?
A. Two nights in the hospital, 4-6 weeks recovery (paid) and follow up blood tests at six months, one year and two years post-surgery.
Q. Was Jeremy a good human being? Would he be responsible with “my kidney”?
A. I reached out to my Aunt Madelyn (Jeremy’s grandmother) and told her that I was considering beginning the testing process (the nurse recommended not detailing how far along I was in the process in case I changed my mind). Madelyn gave me insight into Jeremy’s health history and put me at ease. He had been careful and responsible after his first transplant (especially for a 20 year old) and what he thought was a cold became an infection. She told me “The world would be a better place if more people were like Jeremy” that it was up to me and that yes, she would donate if she could. I decided to come clean and tell her I was a match but I wanted more information and needed to do a little “soul-searching”. She agreed to keep my secret.
Once Jeremy learned that I was the anonymous match and that I was going to donate my kidney to him, I was surprised when he thanked me for keeping all the testing a secret. While I had been feeling guilty, he had gone through so many ups and downs while others were tested and he appreciated not having to ride that roller coaster again. He was in shock but grateful that I was willing to help him, neither of us knowing whether the surgery would be a success. After catching up a little bit, we both began getting our lives in order, creating a support system, notifying our employers of the impending surgery and before we knew it, we were out of surgery and told it was a success!
I had the simple job of resting at home and sharing the donation process on Facebook, while friends visited and entertained me. Meanwhile Jeremy underwent many more tests, biopsies and finally was able to have his dialysis catheter surgically removed.
One of the best days of recovery was when he sent me a photo of himself eating French fries on the way home from a check-up; a French fry has never held so much meaning. Now eight months post transplant, it has been an incredible experience for both of us. My life is back to normal and my kidney function is “excellent.” Jeremy’s 10-hour days of dialysis are behind him. He is making travel plans, eating French fries, playing soccer and is even training for a marathon.
The final step: a sunny day at the water park to celebrate our good fortune and our new connection.