https://resources.lupus.org/entry/surviving-setbacks

Surviving and thriving despite setbacks

Lupus Foundation of America

Resource Content

In January 2001, one year after he was diagnosed with lupus, Adolfo G. Cabanas and his family drove from Chicago to Brigham City, Utah, to visit family. Cabanas had just turned 13. On the drive home, in March, Cabanas noticed his left foot was swollen.

“It was a 20-hour drive,” Cabanas recalls, “and most of the time I was lying down sleeping. After being home for three days, the pain in my left leg was excruciating.”

At the hospital, doctors tried a procedure called a fasciotomy—cutting open both sides of the leg to relieve the pressure. The tissue became infected, and the infection soon was in his right leg. Another fasciotomy was performed. In spite of the doctors’ efforts, Cabanas’ left leg could not be saved.

“I found out the hard way what horrible things lupus can do when I lost my left leg due to the clotting factors that may come with lupus,” says Cabanas.

Blood clots can come with little warning

Michael Lockshin, MD, director of the Barbara Volcker Center for Women and Rheumatic Disease at the Hospital for Special Surgery in New York City, explains that lupus can cause blood clotting complications in two ways: 

  • by too much clotting, leading to a blood clot (thrombus) in an artery (arterial thrombosis) or vein (venous thrombosis), or 
  • by not enough clotting, leading to excessive bleeding (hemorrhage), due to a very low number of blood platelets or an antibody against a clotting factor.

“According to studies, 20 to 40 percent of people with lupus have some type of antibody to their blood cells, and about half of those will have a clotting problem eventually,” Lockshin says.

A sudden onset of pain or color change in the skin may suggest that there’s a blood clot. Most often it'll start with swelling and tenderness.

“A sudden onset of pain or a sudden color change in the skin—usually a darkening, like if a finger turns blue or something like that—suggests that there’s a blood clot. Most often if it’s a clot in the veins in the leg, it’ll start with swelling and tenderness, usually in the calf or the place where the clot has occurred. But as often as not, it comes without warning.”

Risk factors

“The health conditions that would increase the risk of blood clots in people with lupus would pretty much be the same types of conditions that increase the risk of blood clots in the general population,” explains Thomas L. Ortel, director of the Hemostasis and Thrombosis Center and the Clinical Coagulation and Platelet Immunology Laboratories at Duke University Medical Center in Durham, North Carolina.

  • Risk factors for an arterial clot that could cause a stroke (when a blood clot prevents oxygen-carrying blood from reaching the brain cells) include atherosclerosis and hypertension. 
  • Risk factors for a venous clot include being immobile for prolonged periods of time, having cancer, undergoing surgery, pregnancy, and taking estrogen-based oral contraceptives.

“A person can have antiphospholipid antibody and not have lupus, so we tend to think of lupus patients as being straight lupus or lupus plus antiphospholipid antibody,” Lockshin says. 

Anyone with lupus who has had a stroke, heart attack, and/or miscarriage for no known reason should be checked for the presence of these antibodies.

Many people who are otherwise well have the antibody, Lockshin says, and most do not have problems unless something triggers a clot.

Possible complications include pulmonary embolism

University of Maryland graduate student ­Alexandra Atkinson, 26, of Glencoe, Illinois, says the first sign of something wrong occurred in early 2013, when she started having joint swelling and pain in her hands. 

“It kind of presented out of nowhere,” she says. “I’m an active person. I’ve always played sports. I work out regularly. It was just a really strange thing.”

The next event was unexplained pain in her right leg. “I thought that I had maybe strained a muscle,” she recalls. “I went to an urgent-care center and they said, ‘The only thing we need to be concerned about is that it’s potentially a blood clot. If it worsens or sticks around, come back.’ ”

A few days later Atkinson went to her own doctor, where a Doppler ultrasound scan revealed a deep-vein thrombosis (DVT) in her right leg. But there was more to come.

“The next day I woke up with a very rapid heart rate. It felt like I had run around the block,” she says. “That was one of the red flags that my doctor had told me about.”

She went to the nearest emergency room and learned that part of the clot had broken off and traveled to her lung, causing a pulmonary embolism. Her doctor started her on anticoagulation therapy. Later that month, she experienced a mild stroke that caused impaired speech for a brief time.

Whether Atkinson’s blood clotting events resulted from a combination of a long car trip from Maryland to Boston and taking birth control pills cannot be definitely determined. However, the clots led to her eventual diagnosis of lupus and antiphospholipid antibody syndrome. “The doctors started asking me questions about the joint pain I had first noticed earlier that year,” she says. “They started putting all these things together and said they needed to test me for lupus.”

Taking it in stride

Despite lupus flares, Cabanas has completed his undergraduate degree in addiction counseling at Eastern Washington State University in Cheney. It’s a long way from Texarkana, Texas, where his family now resides. But Cabanas selected the university for a very particular reason: Lupus also has left him with only about 10 percent of his kidney capacity, and being a Washington resident both increases his chances of obtaining a kidney transplant and puts him close to an excellent transplant center.

“I have dialysis several times a week, and I have to carefully monitor everything I eat and drink,” he says. “To keep my blood levels at the right range, I have to stay active, so I ride my bicycle, play tennis, and go rock climbing.” He adds that his prosthetic leg has a “sport design” foot, which is a little more flexible and resistant than the basic kind.

You can see, then, why Cabanas has some things in common with the young man in the 1993 movie “Rudy.” The real-life Daniel “Rudy” Ruettiger never gave up on his dream of playing for the Notre Dame Fighting Irish football team, despite being just 5'6" and 165 pounds. 

Cabanas never gives up, either.

Atkinson, despite having to take a semester off from her master’s program due to lupus, finished her degree in fisheries science. “I have had low disease activity since my diagnosis and blood clotting events, and I feel well managed with my current team of doctors,” she says. “I look forward to starting my career.”

Her coping strategies include learning all she can about lupus and APS, reaching out to other young women with lupus, and learning how to be her own advocate.

Cabanas says he learned to cope with the loss of his leg by keeping busy “and definitely by avoiding or ignoring those who would tell me I couldn’t do this or that because I didn’t have a leg. I learned to run, jump, ride a bike, and roller-blade on my own. I also had support from friends and family, especially my mom, as well as from members of the church I go to.

“At first it was a devastating and terrifying thing that happened to me. But then I would think, ‘When there’s a will, there’s a way.’”

What can you do to prevent a blood clot from forming? 

Dr. Ortel recommends talking with your physician about any risk factors you may have and discussing strategies to lower those risks.

Getting treatment for any additional conditions tops the list. “Particularly if your cholesterol is elevated, you need to get it down. Also, women with antiphospholipid antibodies need to talk with their gynecologist about their contraceptive strategy, because some [physicians] recommend that patients with antiphospholipid antibodies avoid estrogen-based oral contraceptives.”

With long car trips and long flights, “Get up from your seat and walk around, or get out of the car and walk around, so that you’re not immobile for any prolonged period of time.”

He adds that sometimes the physician will prescribe for people who have had prior clots a prophylactic dose of an anticoagulant before they get on the plane, “but in somebody who has never had a clot, I just recommend getting up and moving around.”