An island of many, not one

Kidney failure came suddenly and as a complete surprise to Della Major, an AKF Ambassador, kidney transplant recipient and educator. She was a healthy and thriving 42-year-old until the day everything came crashing down on her and she fainted while teaching a class. After being rushed to the emergency room, Della found out what was going on: she (unbeknownst to her) had lupus and it had attacked her kidneys, causing them to fail.

Della was shocked, as there was no history of kidney problems in her family. However, once she did some digging into her family history, she found out two of her aunts had battled lupus, which can be genetic. Looking back, Della also said there were signs that something was off, but she attributed these symptoms to other causes and wasn't overly concerned at the time.

"There were several things over the course of months and years," Della said. "There was fatigue, high blood pressure, ashen skin, hair loss and scalp issues. I just attributed the hair and scalp problems to issues with my hair follicles and I thought I was just doing too much, as I've always been a very active person." 

Della also experienced itchy skin, lack of appetite, swelling hands and not urinating as frequently as she should be. "I would drink a sizable amount of water and you would think that that would have me going [to the bathroom] constantly, but I wasn't," she said. "I wasn't paying enough attention and I was excited that I didn't have to go pee, but at the same time, [not urinating enough] is not a proper kidney function."

As a result of her experience, Della said she strongly advises people to listen to their bodies. "Everything your body tells you is a cautionary zone and a sign that you need to get yourself checked out," Della said. "Don't do what I did and [waive off your symptoms] or self-diagnose. I will always recommend that people err on the side of caution and not let your symptoms get to a point where you are in the final stages of something."

Her kidney failure diagnosis meant she had to go on dialysis in order to stay alive. At the advice of her doctor, Della quit her job in 2016, making her unable to afford dialysis. She then received health insurance premium assistance from AKF. After that, Della decided to get involved and give back.  

"I decided to become an ambassador so I can let other people know about not only the services at AKF, but also about kidney care," Della said. "A well-informed patient is a healthy patient. I want people to know there is help out there because there are so many people, like me, who just didn't know that [help is available]. I'm an educator by trade and I really believe in sharing information."

As an ambassador, Della advocates for people with kidney disease on Capitol Hill and helps members of Congress understand the importance of legislation like the Living Donor Protection Act. She also has participated in patient-to-patient webinars, assists in hosting kidney screening sessions, writes articles and op-eds about kidney disease and speaks to people about the importance of kidney health.

Della emphasized that it's critical for people with kidney disease to know they aren't alone in their fight and to advocate for themselves. "Oftentimes, when people are diagnosed with something, they feel afraid and they don't speak up. In order to get results and for something to happen, you have to speak up and share your story," Della said. "You have to be proactive with your care team and know what you want because you know your body. Make sure everyone is informed and everyone is involved so that it's not an island of one. There is healing when [you get other people involved in your fight]."

She also urged people to remember that a diagnosis is simply a diagnosis and nothing more. "[Your diagnosis] doesn't determine your outcome," Della said. "Once you understand it, then determine what will be your best normal and live that life. Also, forgive yourself, because [being diagnosed with kidney disease] could happen to anyone. Don't allow yourself to wallow in despair, but at the same time, go to a support group and talk to someone about it because there are so many people who understand your journey."

To learn more about AKF's Advocacy Network and becoming an AKF Ambassador, visit https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network