A continuation of a look at lupus: The Wolf at the Door
This is Heide Wilson and this is not lupus-lite. This is twenty years of hell and hope. This is Heide sporting a wig from lupus hair loss. I met Heide through the S.L.E. Lupus Foundation and the Lupus Research Institute. This was no random accident; I requested to speak specifically with a lupus patient who had suffered organ-threatening disease and who had advocated on behalf of lupus research and education. I was also keen on knowing more about the tragic racial disparities in lupus treatment. If I’m lucky, Heide will become my friend for a long time.
Heide is 48-years old, was a computer manager on Wall Street; is an Air Force veteran, a single-mother who paid for college degrees for her two children; a Brooklyn resident, a lupus patient and a strong voice for people with lupus. She lost her younger brother to lupus ten years ago. She signs her emails “peace and blessings,” and I believe her. She is smart. She is committed to this cause and others, despite being “officially” disabled. Heide volunteers for HIV-New York City and the youth group at her church. She has gone from a full life of a well-paying corporate job and single parenting to an empty nest and work that is – at once, meaningful and without pay. Regardless, Heide has a sense of humor that is endearing and engaging.
“I’m just tingling, ringing and hurting all over,” she said to describe some of the symptoms she faces on an on-going basis. Thanks to recent, excellent care through participation in a clinical trial, Heide spends more time at home now than in the hospital.
Heide’s lupus story is typical in many ways. As a young bride, in her early twenties, while serving in the Air Force, Heide began to have extreme fatigue, joint pain and other symptoms. Her military physician suspected lupus, but Heide chose not to follow up. Understandably, she was young and did not want to be burdened with a lifetime chronic disease. She also wanted children (women with lupus can have complicated pregnancies – more on this in part three of the Wolf at the Door to come). Two healthy pregnancies followed, which Heide recognizes in retrospect is by no means always the case for lupus patients. By age 26 Heide was working two jobs. She was still performing weekend duty in the Air Force reserves while also working as a computer technician on Wall Street and in the field.
“I had terrible fatigue. Some days it was almost impossible to get out of bed. My arms and legs felt like lead. My joints were so painful, red and inflamed,” she said as she described her life in those days. By that time, Heide was a single parent, and as she said, “you just don’t stop.”
Visits to her HMO general practitioner when her hands were swollen and her hair was falling out led to speculation of an allergic reaction to “something” and a “stress” diagnosis. She was referred to a psychiatrist who prescribed multiple medications. Over time Heide began having what was diagnosed as panic attacks, one of which resulted in a trip to the emergency room where the doctor speculated that she might have lupus. A battery of tests followed. Heide was diagnosed with SLE, but was still under the care of a general practitioner. Rather than being prescribed common front line treatments such as Plaquenil and Prednisone, Heide’s doctor loaded her up with Methotrexate, which is sometimes used in SLE treatment, but more generally in tandem with the aforementioned drugs.
“The Methotrexate totally knocked out my white blood count. I was put in reverse isolation in the hospital. I had no resistance. There was MRSA [methicillin-resistant staphylococcus aureus] in the hospital at the time and I think the hospital really wanted to get me out of there.”
Heide was sent home, still suffering with a variety of problems including pericarditis. It was at about this same time that Heide’s 28-year old brother, Keith, became acutely ill – seemingly, out of nowhere. “He never had any symptoms. He just suddenly became very ill and went to the emergency room,” she recalled. It was indeed an emergency. Keith was in kidney failure due to lupus nephritis. He was immediately put on dialysis. “After a couple of years he received a cadaver kidney, which worked for a couple of years, but then his body rejected it. He went back on dialysis.” (Listening to Heide at this point, I’m thinking, praying, and hoping, — “please tell me soon how this ends and that today he is somehow thriving.”) “ He died at 36 from heart failure,” Heide revealed. “It tore my family up emotionally,” Heide said. “It put my parents in a panic mode [about me]. If I don’t answer the phone they get very nervous.”
Thankfully, at the time in which her brother died, Heide was under the care of a rheumatologist and receiving better-informed care. Before long Heide’s feet and ankles began to swell. “I remember my daughter telling me that it looked like I had cankles.” Heide laughs then turns somber. “But I also remember how painful it was to walk during that time, especially on the day of my daughter’s junior high graduation. I was going no matter what,” she added.
The edema (swelling) that Heide was experiencing was a symptom of lupus kidney involvement. Protein was found in her urinalysis and Heide was immediately treated with intravenous steroids, Cellcept (an immune suppressant) and diuretics. She received IV steroids three times weekly for several years. Her kidneys have stabilized with evidence of a small amount of protein in her urine now. “Of course you don’t want any protein, but one gram is so much better than where I started,” she said.
By 2007 Heide could no longer work. Her disease and the related time and energy devoted to treatment made it impossible for Heide to continue to meet her job demands. She now receives social security disability because of lupus but her former insurance company and former employer came up with a different diagnosis for the insurance funded disability: Mental illness.
“I do believe it was discriminatory as a way around having to pay the benefits,” Heide offered in response to my gasp. The insurance company did their own investigation separate from Social Security. Basically, Heide described a witch-hunt that enabled her insurance company and former employer to pay only 24 months of disability (the max allowed for “mental illness” in her policy), versus a lifetime disability check for a “physical” disease. “I just don’t have the energy to fight this,” she added.
When asked about her overall experience with health insurance, Heide tells a story that may, in fact, be telling. “The whole time I was in an HMO plan, I was misdiagnosed and I never saw a specialist. It wasn’t until I was in a PPO-POS plan that I began to get good care.”
Today Heide has especially good care while enrolled in a lupus clinical trial for Benlysta, the first successfully tested new drug developed specifically for people with systemic lupus in more than 50 years. “It’s given me a lot of hope,” said Heide, who was forced to give Plaquenil (a disease modifying anti-rheumatic drug that is typically prescribed to help control lupus) over seven years when the drug began to affect her vision. Plaquenil can cause vision problems and even permanent eye damage among patients with abnormal kidney function. Heide falls in to this rare group. Otherwise, most patients tolerate Plaquenil very well and are advised to obtain a baseline eye exam prior to beginning the drug, to be followed by eye exams every six months. Benlysta has had two successful Phase 3 trials to date is filing for FDA approval.
Heide believes that the Benlysta has allowed her to reduce the amount of prednisone she receives. As she said, “I’m getting older and I can’t keep getting large amounts of Prednisone.” Corticosteroids like Prednisone can create such side effects as: a swelling, or rounding of the face (moonface), acne, dramatic weight gain, hair loss, easy bruising, thinning of the bones, high blood pressure, diabetes, increased risk of infection, depression and aggression, muscle atrophy and this is not a complete list.
She’s grateful for the help, support and strong friendships she has received from the S.L.E. Foundation and attended the Lupus Advocacy Day in on Capitol Hill last year where she spoke out on behalf of lupus research funding and in support of important lupus education initiatives. I’m dedicating TODAY to Heide and asking readers to take just a moment to advocate on her behalf, and for others like Heide. Call, e-mail, tweet. Here’s how: Tell Congress
Do it now. Time is wasting, and bodies like Heide’s are wasting away, even though her spirit soars. I can still hear her laughter and relief when she recognized that she was being interviewed by someone who knew what she was fighting. Let’s help her win, shall we?