Almost 30 hours after my bilateral lung transplant, it was time for me to be extubated and take my first solo breath with my new lungs. My wife, Susan, was at my bedside, along with several nurses. In a video of that day last July, you can hear Susan ask…
My Post-transplant Life Is Well Worth the Cost
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
This time a year ago was very different for my wife, Susan, and me. My idiopathic pulmonary fibrosis (IPF) was no longer stable, but progressing. Susan was confident I wouldn’t make it to Christmas. Upon exertion, I needed over 7 liters per minute (lpm) of supplemental oxygen. Exertion…
I never thought I’d take for granted the caregiving I receive from my daughter, at least not on purpose. But that’s exactly what I was doing. I knew I could count on her on the days I needed someone to drive me to my appointments, for instance, because when my…
Inconsistent results in the final planned preclinical study of NXP002, Nuformix’s experimental inhaled therapy for idiopathic pulmonary fibrosis (IPF), delayed completion of the preclinical data package needed for a potential advancement into clinical trials. The U.K.-based company, through an outsourced contract research organization (CRO), now plans to conduct additional…
Accord Healthcare has released a generic version of Esbriet (pirfenidone) for people in the U.S. with idiopathic pulmonary fibrosis (IPF). First approved by the U.S. Food and Drug Administration (FDA) in January, the treatment is now available and ready to be shipped, according to Accord. “We’re proud…
It’s hard to forget traumatic events. Even if we’re not directly involved, these moments often become ingrained in our psyche. When we face trauma firsthand, we tend to remember many of the sensory experiences connected to the event. My most traumatic experience was being intubated after an exacerbation…
Carrying the weight of the world on your shoulders can be exhausting. Those of us touched by rare disease — whether as a patient, caregiver, loved one, or friend — understand that anxiety can be triggered by almost any activity. Examples might include anticipating a medical procedure, awaiting test results…
Treatment with metformin, a medication commonly used to lower blood sugar levels in people with diabetes, was associated with a significantly lower risk of death or hospitalization in patients with diabetes and idiopathic pulmonary fibrosis (IPF), according to a study based on insurance data. The study, “Evaluation for…
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Tvardi Therapeutics’ TTI-101 for the treatment of idiopathic pulmonary fibrosis (IPF). TTI-101 is a small molecule, given orally, that acts as a direct inhibitor of STAT3, an inflammatory protein that plays a role in the…
