| Kidney disease | Patient stories | Transplant

The Living Kidney Donor Experience Pre and Post-Transplant Surgery

August 29, 2023, 8:49am EDT

Two patients speaking with two doctors in a health clinic

Donating a kidney is one of the most selfless gifts one person can give to another. But what is the donor experience like before and after the transplant surgery? Read living kidney donor Jessica Kolansky’s personal story and hear from transplant coordinator Alexandra Tatooles to find out. Along the way, learn about the donor evaluation process, the transplant surgery, and resources available to living kidney donors.

What was the donor evaluation like?

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When Jessica's father learned he had kidney failure, his children immediately stepped up to donate–despite his objections. 

"I looked at my brother and then my dad and asked, 'Can't we donate a kidney?' He responded with his favorite line, 'I didn't raise you for spare parts.' I told him he didn't ask, I did," Jessica said. "He sheepishly admitted that we could, so I started doing research and found the National Kidney Foundation. Their website had a wealth of knowledge and was incredibly helpful."

After learning that you can live a long, healthy life with one kidney, Jessica and her brother were even more determined to donate. They signed up for the donor evaluation at their local transplant center in Philadelphia. 

"The center had a class that explained what to expect from donating and provided an overview of all the testing. After that session, you could get a simple blood test. A few weeks later, the transplant coordinator let me know that I was a match. They couldn't share my brother's status because of HIPPA, so I called him afterward," said Jessica. "We were both matches and both wanted to donate–it was one of the biggest sibling fights we’d ever had but I pulled the big sister card and won.”

Read Jessica's full story here.

Afterward, Jessica underwent more testing to ensure she was a good fit for kidney donation. 

"I did a 24-hour urine collection. When I was returning it, I met a woman who donated a kidney two years prior. She shared her story and reassured me. Then, I had a full day of testing. I did a CT scan, met with an infectious disease specialist since I'd been to South Africa, and spoke with a counselor and donor advocate," Jessica said. "They wanted to make sure I had financial support and people around me to help after the surgery. They also wanted to make sure I wasn't being paid.”

Once Jessica was cleared to donate, the surgery was scheduled. 

Want to learn more about becoming a living donor? Take ‘Becoming a Living Donor’, our free online course that teaches you everything you need to know about donating a kidney, including benefits and risks, how to start the evaluation process, and the surgery.

What is the donor experience post-transplant?

Jessica knew what to expect after donating but knowing and experiencing are different things.

"They told me I'd likely feel terrible since I was going from two fully functioning kidneys to one. I was very confident going into it but was surprised by the pure exhaustion I felt afterward. I had a reaction to the anesthesia and my bladder didn't ‘wake up’ so I was catheterized again," Jessica said. "My dad went to the ICU because of a heart condition but he did a drive-by in his bed and we waved at each other." 

Jessica felt utterly drained of all her energy but still returned home four days after the surgery. 

"A week after the surgery, I stopped taking the pain meds. The most uncomfortable part was not being able to go to the bathroom for 9 days. My team told me getting up and moving would help and it did! I had brain fog too but had moved back home for a month so my mother could help," said Jessica. "A few weeks later, I was walking home with a six-pack and it was too heavy so I decided to join a gym. That helped me get stronger and feel less tired.”

Learn more about living kidney donor surgery.

It's been almost nine years since Jessica donated a kidney–she, her father, and the donated kidney are all doing great!

"After I donated, I got involved with NKF's advocacy group, Voices for Kidney Health. I went to the D.C. Kidney Patient Summit in 2019. It was my first time there and I was talking to people who had to get up at three a.m. to dialyze before we went to Capitol Hill. Kidney disease affects people on dialysis so much more significantly. Since then, I got more involved and passionate about advocating for kidney patients," Jessica said. "Dad and I are doing very well. Donating to my father was the easiest decision I'd ever made. I would do it all over again if I could. I hope everyone who needs a kidney gets one."

Tax credits or deductions are essential to encouraging organ donation by removing a financial barrier to organ donation. Donors can utilize the credit or deduction to cover unexpected costs associated with living organ donation. By reducing the financial burden on donors, more people might be motivated to donate organs, increasing the overall pool of available organs for transplantation. See if your state has tax credits or deductions for living organ donors.

Become a Voices for Kidney Health advocate

What resources are available to living donors?

There are many resources available to living donors.

"Prior to donating, we assess mental health history and discuss some of the risks so they are aware of what could happen after donating and create a support system," said Tatooles. "As a transplant coordinator, I'm the home base, their ally, and advocate throughout the process. Living donors can always reach out to their coordinator for help, even years after donation. We are there for as long or as little as we are needed."

Living donor resources from National Kidney Foundation:

  • NKF Peers: Connect with someone who's already become a living donor. They can share what it is like to donate, provide valuable resources, and support you after the donation.
  • NKF's Kidney Donor Community: Meet other living donors in this safe and supportive space where you can share your experiences, ask questions, and get accurate and up-to-date answers.
  • NKF Cares: Call toll-free at 855.NKF.CARES (855.653.2273) or email nkfcares@kidney.org to get support from a trained specialist. 

"The best advice I can give to living donors is to go through a mentorship program. Connecting with living donors is so valuable. They can share their lived experience and advice for life before and after the donation," said Tatooles. "Do your research ahead of time. Ask all your questions, even the silly ones. The transplant team is there to support and advocate for you."

Keep learning about living kidney donations.

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