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4 min reading time
Idiopathic Subglottic Stenosis patient Tiffany Brown explains how a wrongful tracheostomy “of convenience” disrupted her life terribly.
She had been diagnosed with tracheal stenosis, a condition caused only by long-term intubation or autoimmune disease. (She had neither, yet the operation proceeded.)
Her health coverage subpar, she was told she was fat and must have asthma. They said, “You’re lying about never having smoked.”
No one had ever even taken a stethoscope to her throat.
For surgical intervention, she sat in her doctor’s chair, announcing, “I will not leave this chair until someone tells me what is wrong with me.”
She was at wit’s end. “Camping was the final straw. The condition had taken everything away from me,” Tiffany says.
Finally, Tiffany got the correct diagnosis, Idiopathic Subglottic Stenosis, which only appears in white women between the ages 31-45 years of age. (For reference, tracheal stenosis is above your vocal chords; subglottic, below.)
When the specialist on duty that day put a stethoscope to her throat, they learned she had less than five percent of an airway. She says, “I was basically breathing through a straw,” and “they later learned I only had three percent of an airway.”
It was so acute, in fact, she FLAT-LINED while on the operating table for the 𝙞𝙣𝙘𝙤𝙧𝙧𝙚𝙘𝙩 procedure, a tracheostomy. The wrongful tracheostomy saved her life in that regard. It was the first of three rapid-fire surgeries: August 2017 (she left the hospital with an external breathing tube), October 2017, and January 2018 (it was removed).
At the end of the first surgery, her surgeon said, “You’re back to 50 percent of an airway.” By the second, 70 percent; the third, 90 percent.
A year later, stenosis returned and she was back down to 60 percent again. By June 2020, she was down to 20 percent and finally had the proper surgery. It was magical and, she hopes, with the proper diet and steroid treatment, she leaves this ugly chapter behind her.
Her plea for healthcare reform
Tiffany wants her story heard especially for those in “situations like [hers].” Her insurance is poor and she’s in terrible medical debt now. She asserts, “This is a terminal condition! But it’s not considered a disability! You cannot get disability for it in the United States.”
“Idaho [where she lives] had a Medicaid Expansion. I tried three times to qualify. I sat in a billing office – 𝘸𝘦𝘦𝘱𝘪𝘯𝘨 – trying to express that I deserve to live even though I can’t pay for a surgery.”
Tiffany qualified for Medicaid Expansion on her fourth try. “It is the only reason I was able to change doctors and advocate to get the care I need.”
She lost her insurance when she chose to divorce to leave an abusive marriage and was in such poor health that she couldn’t ever work and go to school full-time.
Strikingly, she said, “I was an affluent white woman for 16 years. How my health was handled then and now is night and day. I am the same person, a strong, articulate, intelligent, white person – and I know if that’s my story, the story of people who are immigrants, people of color, people who don’t speak English as their first language has to be that much worse.”
She shares her story with you here in hopes if enough people know the plight of the sick – who happen to be underinsured and poor – perhaps compassion and healthcare reform may follow.
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GM1 Gangliosidosis: Fatal in children
Medical Devices Group member Kyle Harrison wrote me with the terrible news,
“Last month, the morning after my third daughter was born, we learned my two oldest were diagnosed with an extremely rare and fatal genetic disease.
We’re not sure how long we have before the disease will take them, but it’s somewhere between 10 years old and mid-twenties with declining quality of life.”
There is no treatment or cure for GM1.
Kyle shared, “We are in a race against time.”
I look at their smiling faces below and it’s just heart-breaking. Will you watch?
A possible COVID-19 cure?
Group member Don Kloos writes, “My wife is being successfully treated for cancer with the drug gallium maltolate. It has been recently tested for use against COVD19 in China by top virologists as well as received additional validation.”
He continues, “Can you provide contacts or pathway to get this tested? Application to NIH was accepted, but time and funding are a hurdle. Since this is important to everyone, just reaching out.”
Here’s a two-page PDF about gallium maltolate.
How might we advise Don?
How to market medical devices today
Duane Mancini was kind to feature me in his Project Medtech podcast. We talked medical device marketing considering your prospects can block out almost every bit of marketing you do!
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