Tonia Sina Ellis has struggled with chronic kidney disease for 15 years. The disease has led to several side effects, but most personal for Tonia has been the stigma of poor body image. That’s tough for a college theatre instructor who teaches aspiring actors the art of portraying romantic scenes on stage.
“I needed to see myself as a woman, as a beautiful person, which is hard to do when you have tubes coming out of you,” she says.
So, she started a blog. Originally used as a channel to share her experience with followers, her blog developed into a personal outlet. Tonia posts professional pictures of herself on “Kidneys and Pinups” in an effort to document her body’s transformations and her struggle to accept those changes throughout her journey.
“I didn’t want it to be medical blog, I wanted people to be entertained,” she says. “I wanted to be able to do something that shows beauty in a body that has so many malfunctions.”
Tonia’s first transplant was in 2005. Her mother’s kidney allowed Tonia to be well enough to attend grad school, where she met Matthew. The couple got married in May of 2009, but only had a few healthy months together before Tonia’s body rejected the donated kidney.
On October 4, 2010 Tonia blogged:
Something is wrong. Terribly wrong. I don't know any other transplant recipients that have had this much trouble with a kidney. I can barely walk. When I stand up I nearly black out. But my blood pressure is always high. What is going on? I have been teaching classes, and I am always scared that if I bend down or stand up too fast I will pass out. How scared will my students be?
It wasn’t until more than a year later that doctors at the University of Oklahoma Medical Center determined the reason why Tonia’s first transplant was rejected. Tonia didn’t just have chronic kidney failure, she had atypical hemolytic uremic syndrome, aHUS, a disease most commonly found in children. Only 300 people in the United States have been diagnosed with the disease.
Due to the rarity of aHUS, there is not a lot of information circulating about the disease or how to treat it, but Tonia didn’t have time to just wait around. She read articles, joined forums, and followed other blogs. Her diligent research prompted this blog post in October 2012:
The University of Iowa! The place that studies my disease! I decided I would need to see them. I went to my [hometown] doctor one more time to find out his plan. His plan: Wait until my kidney fails, then go on dialysis. My plan: Work my ass off to get a transplant so I can get back to my life as I know it. My plan was way better.
Tonia personally contacted The University of Iowa Hospitals and Clinics, and in January 2013, the couple met with pediatric nephrologist Carla Nester, MD, and transplant surgeons Zoe Stewart, MD, and Daniel Katz, MD. The team formed to determine if Matthew was able to be her donor. The test results indicated that Matthew was in fact a match, and the transplant was scheduled for March 7, 2013.
Tonia recalls the moment Matthew left her side just before the transplant:
After my IV I went to say goodbye to Matthew. We kissed, hugged for a long time, and said, "I love you.” I said the only thing I could think to say as my last words. "Thank you." Then they rolled him out on his bed and off he went into surgery.
Both surgeries went smoothly, and the two were reunited after the surgery when Tonia used all of her strength to walk into Matthew’s room.
“For somebody who is not related to me, and has no obligation to help me, it’s like, ‘What are you even doing with me? I’m such a burden to you,’” Tonia says.
She also admits she would be lost without her support system.
“He knows how to get me out of my anxiety or my fear,” she says. “I’ve been to a lot of hospitals and had a lot of trauma from those places. Iowa has the best combination of quality of care and professionalism of staff and docs I’ve seen.”
Chronic kidney disease has controlled Tonia’s body for half of her life. Now, with the help of Iowa’s doctors and Matthew’s kidney, she’s ready to take back the reins.
The couple's cover story for Health at Iowa.
View a video interview of the couple's transplant journey.
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