Philly patient-safety advocate has emerged from a coma
Amy Reed and her husband have fought to ban a medical device that worsened her cancer prognosis. Saturday morning at 7:45 am, after five days in a coma, Amy came back to consciousness.
UPDATE: Amy Reed's husband, Hooman Noorchashm, reports Saturday:
"This morning at 7:45 am, after five days in a coma, Amy came back to consciousness - She is very weak, but is following commands and is oriented to place and person.
Life is precious and fragile - let us always respect it and work to preserve it.
Many thanks for the outpouring of love and prayers. Hope, Faith and Action...Always win the day."
Amy Reed, the doctor and mother of six who has fought for a ban on the medical device that worsened her uterine cancer prognosis, is in a coma at the Hospital of the University of Pennsylvania.
On Friday, her husband, cardiothoracic surgeon Hooman Noorchashm, emailed a searing account of her latest medical crisis to some of the physicians, regulators, politicians, and journalists who have witnessed the couple's campaign, which has dramatically curtailed use of medical devices known as electric morcellators.
"Since Monday morning at 10:15 a.m., we've been fighting to save her life from a disastrous cardiac arrest," he wrote in the email, which he agreed to let the Inquirer use.
That morning, Reed started her day at their Yardley home, fixing lunches and sending the children off to school. Her husband took her to a nearby Penn radiology center for a routine scan. Neither realized that her inoperable abdominal tumor was about to become an immediate threat to her life by choking off blood to her heart.
Through the combined actions of Noorchashm, Bucks County paramedics, physicians at St. Mary Medical Center in Langhorne, the Penn medical helicopter team, and Reed's doctors at Penn, she survived the emergency. But it will take time before her neurological outlook is clear, he said Friday.
"Amy is my pillar of strength, love, tenacity and grit — and not just mine, but our whole family's and many of her friends'," he wrote in his email. "Amy lives, and fights, for our children."
Electric morcellators have motorized blades that enable doctors to cut up and remove uterine tissue through tiny abdominal cuts rather than one big incision. But the process can spread fragments of a rare, aggressive uterine cancer, leiomyosarcoma, worsening an inherently scary disease course. The cancer can't be detected reliably by preoperative tests.
Reed became the symbol and spokeswoman for that nightmare scenario after undergoing a hysterectomy in October 2013 at Brigham and Women's Hospital, part of the Harvard health system, for which both she and her husband then worked. Before the surgery, doctors diagnosed her with benign fibroids; they did not tell her that a morcellator would be used.
Reed has undergone surgeries, chemotherapy, radiation, and immune therapy, but her cancer has recurred and progressed.
Even so, in recent months, she has been "active, independent, and appreciative of the time we've had with family and friends — despite the sometimes paralyzing fear associated with her dire prognosis," Noorchashm emailed on Friday.
On Monday morning, as Reed waited in a radiology scanning suite, "something awful happened," sending her into cardiac arrest.
"I rushed back and saw disaster unfolding. Her legs were purple and swollen below the waist. Her upper torso was mottled and bluish. She was agonal," or gasping, Noorchashm wrote. "She had no pulse. I started CPR. Someone called 911. I asked someone to call … to arrange for an airlift" to Penn.
Paramedics arrived and threaded a tube down Reed's windpipe to help her breathe. An ambulance rushed her to St. Mary Medical Center, where she was hooked to a ventilator. Noorchashm could "feel a thready pulse" that gradually grew stronger.
About 11:30 a.m., St. Mary doctors agreed to do surgery to connect Reed to a heart-lung machine, even though a heart-function test revealed a major heart vein was compressed, denying blood to the vital organ.
"I asked them to forget about the fact that she had stage 4 cancer, because Amy was highly functional just over an hour ago," Noorchashm wrote.
The touch-and-go surgery was successful — although at one point, Reed's blood flow stopped for unknown reasons, her blood pressure plummeted, and Noorchashm was sure he was going to lose her. He ducked his head under her surgical drapes to whisper to her.
"Need her to know that I'll take care of the kids with all of my heart and soul — that they'll know how their mother worked in this world," he wrote.
About 3 p.m., a PennStar helicopter brought Reed to Penn's hospital in West Philadelphia. There, CT scans revealed the cause of her cardiac arrest. As Noorchashm explained it, his wife's fast-growing abdominal tumor pressed on a major vessel, cutting off blood to her heart — and then the tumor's own blood supply ruptured.
"She bled from her tumor — like getting shot," he wrote.
Sharing the latest chapter of their harrowing odyssey is characteristic of the couple's anti-morcellation crusade over the last 41 months. They have given countless interviews and written blog posts on patient safety for Philly.com, and Noorchashm has copied key officials and journalists on thousands of emails — many of them scathing rebukes of what he sees as regulatory and medical failures.
The impact has been huge. Although the FDA has not banned power morcellators, it now recommends against using them in almost all cases. Its scientists estimate the risk of spreading a hidden cancer at 1 in 350 — not the 1 in 10,000 that gynecologists used to assert. Hospitals and insurers have largely abandoned the device, the leading manufacturer pulled its brand from the market, and hundreds of liability lawsuits are pending.
As always, Noorchashm sounded realistic, but resolute and hopeful in the concluding paragraphs of his email describing what happened on Monday.
"Amy had a long 'down time' — nearly one hour of CPR. Despite the fact that her organs are working, she's in a coma. I do not know when (or if) she will wake up."
"Easter is coming — do miracles really happen? Miracles do happen all around us every day. And I can say with 100 percent confidence that Amy and my children deserve one now."