Kidney transplant: Patient documents body’s changes

Tonia Sina Ellis relaxes on a bed in Oklahoma City, posing for a picture that’s helping others change their thinking about what a transplant surgery does to a body. Six weeks earlier she was lying in a different bed—at University of Iowa Hospitals and Clinics in Iowa City—having a kidney transplant.

Tonia Ellis and husband, Matthew

Tonia Ellis and husband, Matthew

Tonia 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 difficult for a college theater 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 Pin-ups” 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 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 her future husband, 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 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 UI Hospitals and Clinics, and in January 2013, the couple met with pediatric nephrologist Carla Nester, MD, and transplant surgeons Zoe Stewart, MD, PhD, 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.

For more information, visit the UI Transplant Center web site or call 877-386-9108.

–January 2014 (Winter 2013-14 issue)

One Response to “Kidney transplant: Patient documents body’s changes”

  1. Dear Tonia, Congratulations on your second kidney transplant. I hope you continue to experience good success for many years. I have had insulin dependent diabetes for 50 years. I underwent an unusual transplant procedure (at the time) in 2002, called an islet transplant. Islets make insulin in non-diabetic people. The procedure was done at the University of Minneapolis islet transplant center (now called the Peterson something?). Up to that time, I experienced frequent low blood sugars and what is called hypoglycemic unawareness. These episodes resulted in unconsciousness, if I did not catch them in time. I was on immunosuppressants for 5 years to prevent rejection of the donor islets. The islets failed in 2007 and I have returned to having hypoglycemic unawareness, which affects every second of my life. Like you experienced during your first transplant–when you feared bending down and getting up quickly–I am afraid to go anywhere and do anything without first checking my blood sugar to make sure it is in the safe zone. I also carry a juice box in case I should have a sudden drop in blood sugar and need fast-acting sugar. Numbers and constant vigilence rule my life. You probably also need to review your “numbers” frequently. Again, best wishes to you.
    Transplants are beautiful when they work.

Leave a Reply

You must be logged in to post a comment.