After watching a rather “dry” physician, a pulmonologist (I presume) on a video (you can watch it here), I felt like there was more to be had.
This goes beyond lacking “personality” – I needed hope… something! He talked for about two minutes, stating the facts about idiopathic pulmonary fibrosis (IPF):
- IPF typically affects people around the age of 65
- It’s progressive and there are no known drugs or treatments that can significantly slow it down
- It starts with a simple cough (usually)
- Worsens to major difficulty breathing upon any kind of exertion
- IPF interferes with and destroys quality of life
- Many people die within three to five years after diagnosis
- People are different and the disease may progress differently for people
- There are treatments to help reduce symptoms
- Has a major impact on family and friends
But what I wanted to hear him address more in-depth were the other issues associated with IPF.
As the cough progresses, it slowly becomes debilitating. The reality of what may lay ahead begins to settle in for patients and their caregivers and family as time passes on. Many caregivers will face challenges of their own, like trying to decide the level of care a patient / loved one may need. Will they be able to move the patient from room to room, to the doctor’s office? Will the patient choke in their care and what do they do? Will they be able to manage the different types of therapy, like oxygen?
It’s very traumatic and frightening for people when they cannot breathe. Their caregivers feel powerless to help them. Patients and caregivers long for “what used to be” – their old lives together–and must face the new normal. Over a period of time, people lose the ability to run, walk, play baseball, ride horses, fish, wash dishes, make love, and pull themselves up in bed. It’s really cruel.
I admire anyone and EVERYONE whose lives have been touched by IPF.
But the thing that I keep clinging to is hope: Hope that more people will qualify for lung transplants, hope that treatments like Esbriet will improve and will help to eventually delay the progression of the disease.