On April 6, 2023, I received a diagnosis of GPA (Granulomatosis with Polyangiitis) after undergoing a lung biopsy. This diagnosis came after a lengthy journey that began in 2010 when I was treated for Giant Cell Arteritis. Despite experiencing symptoms and seeking medical attention, it took time for my doctors to identify the root cause. Throughout this period, there were instances where tests and follow-ups were delayed due to various factors, including the challenges posed by the COVID-19 pandemic.

The progression of my symptoms and the discovery of nodules in my lungs led to concerns about pneumonia, prompting further investigations. A walk-in clinic flagged the possibility of Wegener's (GPA) and expedited my appointment with a new pulmonologist. I am grateful for their quick response. Subsequent tests and consultations with a rheumatologist confirmed the presence of GPA. To receive specialized care, I sought a new rheumatologist and was fortunate to find one through a referral.

In April 2023, I began treatment with Rituximab infusions and was also taking prednisone and oxygen around the clock. The disease progressed rapidly, causing intense pain in my trachea and radiating through my chest, back, neck, jaw, ear, and eye. Although I communicated these symptoms to my rheumatologist, I felt that some of my concerns were dismissed during our discussions. Additionally, I experienced discomfort in my legs, which raised concerns of blood clots. The side effects of the medications, including weight loss and disrupted sleep, further added to my struggles.

Due to the challenges and disagreements surrounding my treatment plan, I am considering seeking a second opinion at the Cleveland Clinic, despite the distance. I am aware of the specialized care they provide and have heard positive feedback from others who have received treatment there. As I approach my 70th birthday, I reflect on the uncertainties and difficulties I have faced, but I remain optimistic and open to the possibility of improvement. I am currently scheduled to see an ENT specialist to address concerns related to tracheal involvement and explore potential solutions.

I appreciate the opportunity to share my journey and welcome any insights or feedback from this community. Thank you for lending an ear and offering your support.