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Debbie H., IL

I am a Family Nurse Practitioner, diagnosed with NSIP for only two months and this has devastated my life in a short time period. For several years had frequent lung infections, fatigue, would walk short distances and stop because I was short of breath. I would park close at stores so I would not have to walk far. I contributed this to asthma or bronchitis.

In August I had brain surgery trigeminal neuralgia and ended up with what as was told was pneumonia as a result of a cerebral spinal leak that required a second brain surgery in two weeks. While in the hospital, I had an exacerbation of respiratory symptoms that the neurologist and residents seemed unwilling to treat. The specialist did suggest I see a Pulmonology specialist. The pulmonologist office they suggested could not see me for six months. The neurologist explained the preferred research, so only saw a couple patients a week. As a health care provider I have always placed a close eye on my patient’s care.

After going back to work, two weeks after my surgery, the hospital laid me off due to Covid causing a decline in visits so insurance ended. I’ve found a health care system that doesn’t care if I need oxygen, need to start on medications, am scared and am possibly going to die. The first pulmonologist saw me one time in October before my insurance ended, said I’m sorry you have ILD, your oxygen is very low, ordered multiple testing, ordered oxygen, never set up with, and would never call me back about results and his impressions from the testing. The second I found last week said basically same, said I have NSIP, referred me to a ILD clinic but said with Covid may take awhile to get in but when I need a lung transplant I will have my foot in the door, said he would try to get me Esbriet from patient assistance, ordered oxygen last week, no one has called since.

My world has turned upside down in just a few months. I wished I’d never went to the pulmonologist. To know that really no one cares is more devastating than anything. I’m truly sorry if I as a provider didn’t listen. It’s like we aren’t listening to patients. They throw around word’s like lung transplants like I may need a toenail removed. God help me because right now it appears no one else is.

First Published: December 17, 2020

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