Pit Bull Nurses

I am irritated. A woman, who has become a dear friend, first contacted me years ago through this blog regarding her husband's ILD. She learned about ILD Clinics, contacted one in their area and they discovered he had be misdiagnosed. He actually had Hypersensitivity Pneumonitis. Why is that important? It is rare that an ILD responds to prednisone therapy, which is why there is a much longer prognosis with HP than other ILDs.

Ten years. That is how long I have been living with HP. Dr. K. recently told me to stay well and fit and I can probably go another five years before lung transplants. She also feels I can go a good ten years post-transplant. I will be 70-years old! I did not expect to live to 60!

Back to my friend: Her husband became short of breath climbing stairs at work. They tested him at home, ran four flights of stairs and measured his O2 saturation rate at 93 percent. Not bad. Before prednisone therapy at the beginning of his journey, he would have measured 77 percent doing this same exercise. He phoned the doctor to report the shortness of breath and hit a wall. A nurse. A pit bull nurse. "Take albuterol." Now, that has NEVER helped me. Ever. I was told to throw it away as it usually does not help ILD patients. She told him that his latest CT Scan was clear. But what has me irritated was when my friend phoned the nurse to discuss the CT scan and the possibility of some minor infection causing the shortness of breath:

" we also discussed his overall outcome. She (the nurse) felt he would live beyond 3-5 years."

How dare she tell anyone such information. Who is she to give that information? Yes, the prognosis for IPF is not good and is the 2-5 year realm but he has HP! Because there is treatment, the prognosis is so much longer! My friend was shocked. And shaken.

If I was not feeling well and had an increase with shortness of breath, I would phone Dr. K. and she would give me a quick run of antibiotic as I probably would have a minor infection.

The nurse told him that he was fine.

Irritated.