Finding a kidney donor can be challenging. The same goes for knowing what to expect from life after a kidney transplant, especially as the experience differs for each person. At an event hosted by the IgA Nephropathy Foundation, foundation professionals and patients offer advice and insights on life while finding a donor and before and after a transplant.*

Understanding patient experiences

At the start, IgA nephropathy (IgAN) patient, Stuart Miller, the moderator of the event and director of strategic planning and government affairs at the IgAN Foundation, introduced Gisela Delgado, an IgAN patient, marketing expert, and brand creative director of the IgAN Foundation. 

Delgado explained that her diagnosis occurred in 1994, and in 2011, she was experiencing many symptoms and began to pursue treatments. In 2017, she was nearing kidney failure and received a kidney transplant in 2019.

She explained that the transplant process is overwhelming. From a diagnosis to ample lab tests, drugs, handling Medicare coverage, and the journey to quickly find a kidney match to avoid dialysis, there is no doubt that stress levels can be high. 

To lessen some of the stress, Delgado guided IgAN patients on how to use the help of others to help them find a kidney transplant, hopefully before progressing to a point of needing dialysis.

How to find a donor

Know that people can help share your story, she says. Make it possible for your friends, family, and any other connections to be aware of your kidney need to increase the chances you find your match. Delgado explained that since it can be challenging, she offered her help at the IgAN Foundation if anyone needed assistance. 

Some tips for sharing your story online include:

• Use social media, such as Facebook, Instagram, Twitter.
• Write emails, texts, and/or create a website to explain your need. 
• Use Adobe Spark or Canva.com—two free programs—to create social media imagery.
• Make your materials easily shareable, i.e., allowing others to share your post on their personal account.

Delgado also explained that you can get creative and promote your story in unique ways, too, such as:

• Put your information (i.e. website/email/social media page with a short message about your need for a kidney) on a T-shirt.
• Write a note that you hand out with your story and that you attach to Life Savers candy that says “Have a Life Saver. Be a lifesaver.”
• Get business cards, flyers, or postcards that you can hand out. You can leave them in the subway, bars, restaurants, and/or community boards. Ensure that they have a prominent message on it about needing a kidney.
• Write a message on the back of your car or put a sign in your front yard.

Delgado explained that posting regularly, even daily, will get you one step closer to getting the kidney you need. Even if there is little engagement on a post, people are still seeing it, and reiterating the message keeps your need for a kidney in mind. She also reminded patients that any tactic, like posting daily, that can help keep you alive is never overkill and always worth it.

Jody Morse, an IgAN patient who had a kidney transplant, provided additional words of encouragement to those with IgAN in need of a kidney. Morse reminded them that the two most important parts of finding a donor match are being proactive and remaining hopeful.

Living with a kidney transplant

Once you find a kidney transplant, you may not know what to expect from what life will be like afterward. In some cases, IgAN may still be prevalent even after a kidney transplant. 50% of patients with IgAN had a recurrence, but it was not end-stage kidney disease (ESKD), shared Bonnie Schneider, director and co-founder of the IgAN Foundation.

Kidney rejection is also a reality. Miller explains that he had organ rejection when he was three months post-transplant, but after a thymoglobulin treatment at the hospital, he was back on track.

Finding the right dosage for medications that prevent kidney rejection, known as immunosuppressants, is also a challenge as some come with side effects and each affects every individual differently. It’s important to share how you’re feeling and any side effects you’re experiencing with your care team, shared Delgado.

Although kidney transplants can come with risks, Karen Smiley, another IgAN patient, explained that immediately after a kidney transplant, you’ll oftentimes realize how much suffering you were experiencing before the surgery. She was on dialysis before the surgery, and the emotional and physical benefits that came with no longer needing dialysis were profound.

Focusing on being well and relying on others to find your kidney match will remove unnecessary levels of stress. To ensure your quality of life continues to rise post-transplant, it is important to adhere to your treatment plan and to communicate with your medical team any symptoms or side effects that are disruptive, so they can modify your plan as needed.

*IgA Nephropathy Foundation. (2020, Aug. 13). Spark 2020 | How to find a Kidney Donor through Social Media & Living with your Kidney Transplant. [Video file]. Retrieved from https://www.youtube.com/watch?v=qu3JpW_2ad4