Suggestions of What To Do If ILD Not Being Treated Properly

What can one do when an ILD is not being treated properly? They are still a rather rare group of diseases, compared to other lung diseases. If a patient is far away from a major city which has an ILD Clinic, how can this chronic disease be treated? Or if the disease is not being treated well? The patient is ignored. This is a major problem with one of my readers who has become a friend. Her husband is just not getting the proper treatment from a major facility, who should be ashamed of themselves. 

Sadly, most of us to not have an advocate as strong as my friend. She is tough. She has to be. They worked with a local pulmonologist, then another then to a major university medical center, then another medical center and more pulmonologists. They have settled on a local one but...settled is the proper way to explain it.

After so many issues and problems, they have now committed to flying across the country once a year to meet with National Jewish Hospital in Denver, who has the highest respected pulmonary program in the country. They are amazing. They will help them drive his care with advice and proper testing. My friend and her husband feel heard there. 

So, what do you do if you are not getting the proper care? Keep searching for a pulmonologist who has a speciality in your specific lung disease. If you ask for but do not get tested for GERD or sleep apnea or a prescription for pulmonary rehab, change your doctor. Check into the pulmonary programs in the larger medical centers in the closest big city. 

These groups of diseases are really chronic diseases. We need longtime care. We need pulmonary function tests and 6-minute walk tests and pulmonary hypertension tests and CT scans and medications and tests on our livers and tests for GERD and tests for oxygen needs and so many other issues. We need a doctor who understands how to guide us through this maze. We need to be a team together. I am so lucky to have Dr. K. on my side. I know that, had she not stepped in, I would not be here. She drove my care from the moment she met me because she saw that I was being ignored. It was all so new to me that I didn't even know that I was not being treated properly. I didn't have an advocate like my friend.