‘I miss the ability to be spontaneous’

Bernice with flower mural

Bernice Conn never expected a routine physical in March 2022 to change her life. 

“I was completely shocked,” she recalled. “I just came in for a physical. I didn’t feel ill. I begged my doctor not to send me to the ER because it was going to upset everyone in my family, and I didn’t want to ruin my daughter’s senior trip.” 

What followed was a string of diagnoses—end-stage renal disease, colon cancer, and multiple myeloma 

“It was unreal and incredibly upsetting,” she said. “My husband and I however took a pledge that ‘we got this’ and that was a motto throughout.” 

Despite the shock, Bernice tackled the challenges head-on: hospital stays, chemotherapy, dialysis, a stem cell transplant, and an ongoing struggle to get on the kidney transplant list. 

After a stem cell transplant and a long recovery, Bernice was declared cancer-free and able to apply for a kidney transplant. But the process was anything but simple. 

“I was super excited, until I found out how well you have to be in order to get well,” she said.  

One center turned her down due to remission requirements. She started the testing process through U-M, and things were going on track, until she fell and broke her shoulder. “That put everything on hold again,” she said. “With other hurdles to overcome, it took about a year almost.” 

Finally, in December 2024, Bernice was placed on the transplant list. “I had applied in February that year. It was a long wait.” 

Bernice transitioned from hemodialysis إلى peritoneal dialysis in mid-2023. “It is so much better,” she said. “Hemodialysis was terrible. My blood pressure could drop in a blink of an eye. I’d get sick, dizzy, and all I would do is sleep the rest of the day.” 

Still, life with peritoneal dialysis is far from easy.  

“I miss the ability to be spontaneous,” she shared. “Now I don’t have the energy. I used to be a go, go, go person. I guess you could say I miss having the energy to do all the things I loved to do when I wanted to do them.” 

A mother of three, she’s missed prom pictures, track meets, football games, and more. 

“What is the hardest for me is knowing my family is worried,” she said. “My life is not the only life being affected by this disease.” 

Despite all she’s been through, Bernice continues to raise awareness and advocate for others. She created a Facebook page to share her experience and offer support to patients like Dior Chambers, whom she met at her dialysis center. 

“It took a really long time for me to decide that I wanted to share what had happened,” she said, “If I can do those kinds of things for other people, and help them, that’s what I’d like to do.” 

To those considering organ donation, her message is clear: “It’s a gift that they can’t fully appreciate   because they cannot understand the huge impact it makes on a person’s life that is receiving it.” 

She adds, “There is no greater gift. You truly are saving a life.” 

For Bernice, and so many like her, a kidney transplant wouldn’t just restore function, it would return her back to the sense of ‘normal’ she misses.  

 “It’s been such a long time since I’ve felt normal that I don’t remember what that is,” she said. “To be able to go back and not have to worry about dialysis, just being able to exercise like normal, to run again—I would love that.” 

More than 2,600 patients in Michigan are waiting for a lifesaving organ, including Bernice. The best way to save a life is to join the Michigan Organ Donor Registry by visiting golm.org/signup.  

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