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Beth
wifemomandteacher
 
 
Be your own advocate!
 
 

 

My sister had systemic lupus. It was the cause of her death, but lupus needn't be a death sentence. The problem was that she was not her own medical advocate. TWENTY YEARS ago she first heard the diagnosis "SLE" and then the doctor told her not to worry. He never referred her to a rheumatologist. When he retired shortly thereafter, she doctor-hopped for her symptoms. She never mentionned the earlier diagnosis.

In 1998, at 41 years of age,  she gained 75 pounds in the summer, had odd reactions to sunlight and was hospitalized. They put her on diuretics and said her kidneys "would come back." By November she had serious infections in her legs and was sent to a different hospital for debriding and started dialysis. She had her first stroke there...and still no one mentionned lupus. She stayed in the hospital until April, returning in late June. Then she was diagnosed with renal failure, severe depression, light sensitivity, psychosis, dermatological rashes,,,She was being defined by her symptoms, but no one was looking at the whole person.

At that point, our other sister and I both researched the symptoms. It will surprise no one that what popped up on the internet was lupus. Since Geri was too sick to participate in her own recovery, Carrie and I took over. When her renal specialist refused to allow a consult with a rheumatologist, we fired him, and called a rhuemy who was listed with the Lupus Association. THANK G-D for this woman!! She took one look at Geri and said, "this is all wrong...and I promise that if I can't find what is wrong, I will find someone who will." DR suggested a new renal specialist, a neurologist and did tons of tests. The ANA did not come back elevated (and never did, because Geri was constantly on prednisone), but DR treated Geri "as if" she had lupus, telling us that blood tests are definitive, unless they don't agree with common sense.

The next 5 years were intense, first with Geri in an assisted living facility, and then her moving in with DH and I. Dialysis took a toll on her, and every little thing was complicated when Geri had it. We fired her primary care physician, and turned her care over completely to the rheumatologist and nephrologist. And those two talked to each other about her!. The number of medications she ended up on was amazing, especially after she was also diagnosed with fibromyelgia and neuropathy in her leg. Her immune system was compromised, and every illness was an excuse for the lupus to flare. A simple fall led to a hematoma, gangrene, a staph infection and the lupus attacking her lungs. The lupus, or dialysis, or medication or something caused another stroke in April 2004, 4 days after I gave birth to my infant daughter.

That started...you guessed it... another flare. Geri didn't believe it, especially since she started having some paranoia with the accompanying psychosis. The rheumatologist tweaked Geri's meds, and told us that, with the myriad of complications Geri had, there was nothing more at this time that could be done. It is hard to tell, to be honest, if Geri started to pull out of that flare. The stroke had caused problems in the part of the brain that controlled decision making, so I don't know.

Then, on September 27, 2004, the transplant hospital called. A cadaver kidney was available. Although DH and I argued that Geri was in a flare, we were told by the transplant team that getting a kidney would not be a problem. What they meant was, the lupus wouldn't be a problem for the transplant, not that the transplant would not be a problem for the lupus. They stopped her lupus meds for a week, and then the hospital's rheumatologist, over our objections and those of Geri's real rhuematologist, only put her back on half the dose she was on.

Geri never came home. She went to a nursing home/rehab...and it was not the best place, but because of her age, and the cost of the transplant meds, no place else would take her. They didn't get any orders for her lupus meds, until I had the rheumy fax orders to them.

Basically, it was down hill from there.

By the first week of December, Geri had undetermined infections. She entered the hospital, and 5 hours later her breathing was so labored, she was intubated. Shortly thereafter she lost consciousness. On December 10, 2004, we gave the DRs permission to remove her ventilator, and a half an hour later she died.

The autopsy said that she died of bleeding into the lungs from the heart, liver failure, brain damage- multi organ failure due to systemic lupus.

If she had been her own advocate 20 years ago. If she hadn't denied the diagnosis. If she had not doctor-hopped....

Beth

 

 

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