Category Archives: Engaged Patient

Engaged Patient

Reporter reacts to sleep apnea diagnosis with questions, research and a better solution

I woke up in a strange bedroom with 24 electrodes glued all over my body and a plastic mask attached to a hose covering my face. The lab technician who watched me all night via video feed told me that I had “wicked sleep apnea” and that it was “central sleep apnea” — a type […]

Engaged Patient

After cataract surgery, this engaged patient knows we can do better

Two weeks ago tomorrow, I had cataract surgery on my “second” eye, four weeks after the first surgery. Now that I’ve resumed normal activity and internalized the eye drop regimen, I’m reflecting on the experience from my engaged-patient perspective. The surgery went well, and I’m very happy with the results. But communication I received from […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

The Edge of the Known World, Revisited

Editor’s note: Nearly one year ago, I wrote about Adam Hayden’s experience of long-term survival of glioblastoma – brain cancer – for which he received a prognosis of 15 to 18 months in 2016. “Long term” survival is relative; at six years, Adam is now even farther out on the edge of the “known world” than […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

An Update: Thanksgiving in Canada

Editor’s Note: I’m happy to relay further good news from Bill Gardner. In a recent post, he reports that his latest CT scan showed no evidence of cancer. As described in the post below, Gardner has been receiving immunotherapy known to help a small percentage of patients with  recurrent head and neck cancer. He is […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

Thanksgiving in Canada

I hadn’t seen a new post in Bill Gardner’s Cancer Journal since late July and was growing concerned. So, I was relieved and moved by the essay he posted last week, in which he notes Canadian Thanksgiving and supplies some backstory on his recent throat cancer treatment. The news is good, all things considered, and his […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

The Edge of the Known World

Adam Hayden has lived with glioblastoma for more than five years and in that sense is living at the edge of the known world. Only 7% of patients with this form of cancer live as long as Hayden has; he is an N of 1. Most physicians haven’t cared for glioblastoma patients in Hayden’s circumstance; […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

Hopeful News from Bill Gardner

I’m happy to report hopeful news from Bill Gardner, whose story I’ve been following and relaying in Engaging Patients since he shared his cancer diagnosis more than a year ago. When I last wrote about Bill’s posts, which appear on the Incidental Economist blog, he had just learned that his throat cancer is incurable. His […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

COVID-19 Patient Credits Palliative Care for Her Successful Recovery

Bobye List is an inspiring exception to the heavy, often deadly, toll the pandemic has taken among older adults. At 78 years old, List was able to successfully manage a serious case of COVID-19 at home, where she lives alone, and has chosen to share her compelling story in a blog post and video for […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

Being a Cancer Patient During the COVID-19 Pandemic

Bill Gardner, Ph.D., has been writing for The Incidental Economist (where he is a regular contributor) about his experience as a cancer patient since early July after he received a diagnosis of oropharyngeal squamous cell carcinoma. In addition to telling his own health story, in posts that now number nine, Dr. Gardner reports on the global […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

Progress Report From Bill Gardner, Engaged in Radiation Treatment

Readers of this blog and The Incidental Economist blog may be familiar with Bill Gardner, an experienced physician, researcher, educator and writer who is blogging while in cancer treatment. I have been tracking his reports with posts here at Engaging Patients that link to his over at TIE. In a post published earlier this month, […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

Check out my: Twitter