Theresa Caldron gives a voice to vasculitis

When Theresa Caldron went to her doctor in 2009, she was having "really random symptoms." She had horrible sinus infections that would not go away (even after surgery), swelling and numbness in her feet that made it feel like they were asleep, and she was exhausted. She knew something was wrong. Unfortunately, her doctor dismissed her concerns.

"My doctor just kept kind of blowing me off," Theresa said. She was a full-time nurse at the time, and her doctor told her, "Nurses always think they have something wrong. Because you know every new thing, you think you have it." He diagnosed Theresa with anxiety and told her there was nothing wrong.

"He always found something to blame [my symptoms] on," Theresa said. Even when Theresa's kidney function began to decline, he told her it was because of her high blood pressure or that she was not drinking enough water. "I was at a point where I had blood in my urine – like you could see it – and he said I had a kidney stone."

After 18 months of fighting for answers, Theresa found herself in the emergency room in kidney failure. She had a kidney biopsy and was diagnosed with a severe form of ANCA-associated vasculitis (AAV) glomerulonephritis, a type of kidney disease caused by damage to the filters in your kidneys (glomeruli) due to overactivation of the immune system.

It was the first time Theresa had seen a nephrologist (kidney doctor). It was also the first time she felt she could ask questions and get answers.

"With all the other symptoms I had, they diagnosed me with [granulomatosis with polyangiitis (GPA) formerly called] Wegener's granulomatosis, which is an autoimmune disease and a type of vasculitis," said Theresa. "It just all fit together."

Vasculitis is a group of autoimmune diseases that causes inflammation of the blood vessels. An autoimmune disease causes your body's immune system to mistakenly attack your own tissues. The type of vasculitis Theresa was diagnosed with, GPA, is very rare. It affects about 3 out of every 100,000 people in the United States. The inflammation from GPA can affect the kidneys, lungs and trachea, nose, sinuses and eyes. 

"I never thought my symptoms had anything to do with something autoimmune when I was first dealing with them," Theresa said. "I just wish more people were aware of it. Autoimmune diseases are a huge cause of other main diseases; they lead to so many other problems and I think we don't talk about it enough."

After finally receiving her diagnosis, Theresa was able to begin treatment, which included a year of immunosuppressive therapy and high-dose steroids. Unfortunately, the damage to her kidneys had been severe and her nephrologist told her that she would eventually need a kidney transplant. In 2017, she went on the transplant waiting list and received a kidney transplant from a deceased donor in 2020.

When she reflects on her experience, Theresa wonders if the outcome would have been different if her primary care doctor had done more to find answers. But she also feels she could have been a better advocate for herself. 

"When I look back, I was an ER nurse and [I wonder] why did I not say, 'No, this isn't what's wrong. I know my body, and this is not what is wrong with me,'" Theresa said. "But I think by that point I got so sick, and I was feeling so bad, and I just let it happen. And he had me doubting myself, too, [thinking,] 'Well, maybe I'm being ridiculous.' I should have been a much better advocate for myself and asked more questions and demanded more answers."

Now, Theresa actively encourages others to do what she did not. 

"I think a lot of people, especially older generations, were taught you don't question the doctor. That it's disrespectful. And they know everything, which is not true," said Theresa. "They don't and they make mistakes and misdiagnosis too. And there's nothing wrong with asking for a second opinion."

Her advice to people struggling to get answers to their health questions?

"Don't back down, ask for a second opinion and there's no reason you can't go to another doctor. You can. It's your choice to." She also added, "I would hope the [doctors] would be glad that a patient wants to be involved in their health care… [but] I know some doctors won't take that very well. And if they don't, then that's not the kind of doctor you want to be with."

Despite these challenges and frustrations on her path to diagnosis, Theresa has held the belief "that something good comes out of everything bad." For Theresa, her experience with GPA and kidney failure was no exception.

"It made me a better nurse for the period that I could remain a nurse," said Theresa. "It gave me so much more respect for people with chronic illnesses and their caregivers, their families. I think it taught me a lot about myself and it helped me teach my kids that just because we have something going against us, doesn't mean we let it keep us down… I've met so many amazing people and I have such a different outlook on life."

Theresa also sees her experience as an opportunity to raise awareness for vasculitis and to help others living with rare or unknown causes of kidney disease. She became involved with the Vasculitis Foundation, connecting with others who also have GPA. She also has worked with AKF on the Unknown Causes of Kidney Disease project and joined AKF's Kidney Action Summit to advocate for legislation that would have insurance companies cover the cost of genetic testing.

"That's my pay it forward for my donor… to honor the gift that I got," said Theresa.

For more information on vasculitis, you can visit AKF's website or the Vasculitis Foundation website.

Educational content for vasculitis and kidney disease made possible by Amgen.