Welcome to the ILD Collaborative blog. The blog is organized in four themes.

  1. Articles that describe original research and initiatives the ILD Collaborative is engaged in.
  2. Reflections from our monthly Newsletter. 
  3. Patient and caregiver stories on the experiences and life with ILDs.
  4. Interviews with clinicians and providers on clinical topics of patient care, and with physician scientists on their research.

Computer Planning

Apr 20, 2020
Over the last six weeks, a variety of computer models have guided policy makers in their response to the pandemic, and perhaps even replaced human thinking by the predictions of such models. Computer planning is a calculable model of reasoning based on the faith in the “logic of facts.”

Need for Certainty

Mar 16, 2020
The need for certainty guides much of human behavior and is one of the psychological reasons for belief in idols, political leaders, and computer predictions.

Supplemental Oxygen: A Medical Necessity, Commoditized

Mar 02, 2020
This past July, after being treated for chronic obstructive pulmonary disease (COPD) for more than 30 years, Jamie Rice was prescribed oxygen therapy. Adjusting to the idea of being tethered to oxygen equipment was hard for her. But dealing with oxygen suppliers made it even more of a challenge.

Face to Face

Jan 27, 2020
Why do we make the effort to meet face-to-face in our support groups? There is good information to learn and to share. But that’s not all.

Reflections on Hope

Dec 12, 2019
How natural is it to think and plan in terms of probabilities? Is it scientific not to be certain? In its broadest meaning, science is a human attitude, one of objectivity, of accepting reality as it is, and not as we wish it to be.

Embracing the Uncertainty, Embracing One Another

Oct 07, 2019
For Judy Amendola, the wait for a new pair of lungs has begun. After a long struggle deciding whether or not to have a lung transplant, she realized the potential benefits of replacing her lungs, scarred by pulmonary fibrosis, outweighed the risks. Due to progression of the disease, she is now on the active transplant list, awaiting donated lungs. Fortunately, her daughter Chloe is at her side, acting as her main caregiver and support.

New Guidelines Aim to Expand Palliative Care Beyond Specialists

Jul 15, 2019
Years ago, Martha L. Twaddle, MD, cared for a patient with pulmonary fibrosis. In the years between diagnosis and death, as the patient transitioned from office-based visits to home care to hospice, Twaddle, an internist and palliative care specialist, oversaw this person’s supportive care. During the entire duration of the illness, there were no hospitalizations or emergency department visits, she recalls. Her team’s coordination and communication helped keep those all-too-common occurrences at bay.

Trust and Trustworthiness in Clinical Care and Research

Jun 24, 2019
The healthcare system was foreign to me until I entered into my 30s. I had periodic visits for checkups and minor indications, always with an eagerness to keep the visits as short as possible. The encounters were not memorable, perhaps appropriately so. I believed that while doctors knew about disease, I knew better about health and wellness. Things have changed over the past 10 years.

Sharing Her Mother’s IPF Journey

Jun 03, 2019
When doctors diagnosed 63-year-old Mariann Rosa with idiopathic pulmonary fibrosis, the lung disease was completely unknown to her and her family. But Lindsay, her daughter and only child, made it her mission to learn all she could about the lung-scarring condition and to support her mother in every way possible.

Airway Clearance: Interview with Jessica Garton, DPT, OCS, CLT

May 13, 2019
Airway clearance techniques loosen thick, sticky mucus so it can be cleared from the lungs by coughing or huffing. In this interview, Jessica Garton, DPT, explains what mucus is, how it is naturally cleared from the lungs, and how to use airway clearance techniques to aid with mucus clearance when having an interstitial lung disease.