Living with Lupus: As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require treatment. I have known several lupus patients with kidney involvement, but only one person’s story stands out above all the others as both a wonderful and horrible example. My friend was courageous and undaunted in her battle with lupus, while her medical treatment plan was fatally flawed.
Several years ago, a wonderful woman in my church was suffering with end stage renal disease. For years, she and her husband taught bible classes to our children and hundreds of others in the church. She lost her husband to a pituitary tumor, and in the years that followed, her Lupus went on to destroy her remaining kidney function. Many people prayed for her and helped her any way they could, and she kept her cell phone close, even during church services waiting for the call that a kidney had been found for a transplant.
During all her battle with lupus nephritis, her treatment never involved a rheumatologist to our knowledge. Many times, several of us who knew her, including a couple of doctors that attended our church, encouraged her to strongly to seek out a rheumatologist to treat her lupus, She kept telling us that her nephrologist planned to send her to one eventually, telling her, “we will treat the lupus once we get your kidneys under control.” We encouraged her to push for a referral, or to even go see my rheumatologist, but she was passive and unwilling to push her nephrologist for a different approach. She wouldn’t question him!
We all tried to explain to her that if lupus was what was causing her kidney failure, and they would probably never get her kidneys under control without controlling her lupus. From what she told us about her medications and treatment plans, it was clear that her doctor never addressed her lupus! Meanwhile, she continued to attend church services, prepare financial statements as the church treasurer, and even sang in the church choir.
One day, she finally received the call and a successful kidney transplant surgery was done! For awhile, she was so much better. But, she still did not see a rheumatologist. Although the anti-rejection drugs she was receiving were doing a great job of preventing the organ rejection, they were not controlling her underlying lupus. Although we continued to urge her to seek out a rheumatologist, she never did.
Eventually, she began to have problems with lupus attacking her transplanted kidney! But, still, no rheumatologist. She was losing her transplanted kidney, not from rejection, but from lupus.
About this time, I attended an LFA patient/doctor conference held in Alaska. When I saw one of the physicians’ continuing medical education sessions was going to be taught by one of the world’s leading nephrologists, I decided to sit in with the doctors and listen. I sat in the back of the conference room, thinking about my friend as I listened to discussions of the standard treatment protocols for lupus nephritis. I realized from what my friend had told me about her medications, none of the standard treatments were tried on her. I became more frustrated as the session progressed.
The most profound information I took away from the session what that almost without a single exception, emphatically, a lupus patient should never lose a transplanted kidney. I spoke with the speaker after the session, and asked about the likelihood of losing a transplanted kidney. The response? “Once the physicians realize a patient has lupus nephritis, they know what to do to prevent loss of the transplanted kidney. It is unheard of to lose a transplanted kidney to lupus. That should never happen!”
But, this was not the case for our friend. No one ever treated her lupus. It seemed clear to me then that she might have been an unfortunate of victim of ignorance and unintended malpractice. She never was referred to a rheumatologist, let alone ever receiving the prevailing standard of care for her lupus nephritis that I had learned about at the conference.
Eventually, our friend completely lost all kidney function, and began peritoneal dialysis while awaiting a second kidney transplant. She got weaker and weaker, her skin became paper-thin covered with deep purple splotches, her hair became sparse and fine, and her heart and lungs became weak. She eventually became so ill, the sad day came when she received the word that she was permanently removed from the transplant waiting list. She was never going to get another kidney.
A handful of us felt so helpless, as our many attempts over the years to convince her to be proactive about her treatment failed. We were frustrated as we had to accept that she just didn’t have it within her to question her doctor or seek a second opinion. Ultimately, that was her choice, and we had to respect it. But, eventually it was too late. It was not too long after she was removed from the transplant list until we lost our dear friend.
She was a close friend to many people near me in my life, my mother-in-law, many of my best friends and all the children whose lives she had touched over the years, including my own kids. Through all her struggles, this amazing woman’s personal faith in God and unquenchable joy seemed to overcome all the emotional challenges of her long battle with illness and organ failure.
Remarkably, she never displayed any bitterness about her lupus and kidney failure, never considered blaming her doctors, and she patiently endured the unsuccessful treatments she received. Through all her lupus battle, she inspired and encouraged everyone who knew her. She never ever complained about how she felt, and kept a cheerful, sunny disposition to the end. Our dear friend had lupus, and it took her life, but it never took away her great joy.
Even now, many years later, her name is mentioned as an inspiration and an icon of nobility and courage in the face of fatal illness. She will not quickly be forgotten.