[susie-robillard]

@kathleenc

Hi Kathleen!
I am so sorry I am so delayed getting back to you when you asked what my initial diagnosis was. Initially I suffered a Mini Stroke (transient ischemic attack) while in FL at our daughter’s home on Christmas Day 2018. During hospitalization the radiologist said my lung X-rays indicated that I had COPD (I never smoked). I did not put much store in that until about 3 months later when I began to cough incessantly and was becoming more and more SOB. Finally in May 2019 I made an appointment with a pulmonologist that a friend recommended. He looked at the copy of the Xray and said it was NOT COPD but rather it was Pulmonary Fibrosis. He followed up with a CT scan in June which confirmed it. He felt it was either IPF or Hypersensitivity Pneumonitis form and recommended trying a course of one month of high dose prednisone and then come back and probably do course a of CellCept and Prednisone. After a month on the prednisone the cough was so much better but still SOB. I was uncomfortable taking meds without a definite diagnosis so my daughter researched Dr Raghu and he contacted me with an appointment.
He ran every test except the lung biopsy which he recommended. We returned to Columbia and my home pulmonologist with all the test results and consultation. He agreed with Dr Raghu’s assessment that it was probably Hypersensitity Pneumonitis due to all the abnormal results from the bronchoscopy biopsies and fluids and scheduled a lung biopsy with the thoracic surgeon which confirmed the hypersensitivity
Pneumonitis form of PF. I started the recommended CellCept and prednisone regimen and have not felt this good in a long time. Hardly any cough. Only short of breath when climbing stairs, tee boxes or greens at the golf course.
My last CT in October 2020 shows no changes and my PFT’s are greatly improved to the point of being in the low normal range for a 73 year old.
I apologize for the length of this response, but it was a long road getting to the diagnosis. I know how frustrated you must feel. Find the best doctors you can, make the best informed decisions that you can, and then move forward with a treatment. I hope and pray that you will get a second chance like I did. Take care! Susie

[susie-robillard]

@kathleenc

Hi Kathleen,
I also wanted a 2nd opinion when I was diagnosed in May 2018. I flew to Seattle to see Dr Ganesh Raghu… a world famous Pulmonary Fibrosis physician who authors numerous articles and studies. He was absolutely a wonderful person, very caring and EXTREMELY thorough. I was diagnosed with Hypersensitivity pneumonitis form of PF and prescribed Cellcept and Prednisone. My lung functions are now low normal, I am not coughing incessantly and I feel wonderful. Please email me if you would like his contact information. [email protected]. Wishing you all the besT! Susie Robillard