A Trifecta of Chronic Disease
I'm Ann, and I was diagnosed one year ago with Idiopathic Pulmonary Fibrosis. Then with Sjogren's Syndrome. Then with RA. I underwent a lung biopsy, completed 12 weeks of pulmonary rehab, and added plaquenil and mycophenalate to my existing medication regimen. My frustration with what I perceived as a fatalistic attitude from my local pulmonologist moved me to ask for referral to a rheumatologist. In turn, I requested a referral to the Interstitial Lung Disease clinic at UCSF, the top ILD clinic in California, and fifth in the country. UCSF's interdisciplinary team provided great (?) news: my lung disease is a significant factor of my connective tissue diseases. My lung condition is primarily inflammatory, much less so fibrotic, providing my rheumatologist an avenue for treatment that didn't really exist for the initial diagnosis of IPF. I've felt despair for the past year, while educating myself about pulmonary fibrosis, but now I have some hope that my prognosis is more positive. Fibrotic disease has very few options for treatment. My Inflammatory pulmonary disease is being addressed in tandem with my autoimmune disorders. There is viable treatment now available to me. It probably won't reverse my lung disease, but its autoimmune component can be reasonably managed by my RA treatment. Life looks brighter now. My rheumatologist now maintains close contact with the consulting physicians and pathologists at UCSF. My team of specialists fine-tuned my diagnosis and treatment options. I had to advocate for myself for referral to rheumatology, then to UCSF. I was too complacent that my local PCP and pulmonologist were adequately knowledgeable about the multiple diseases I have, and were well-equipped to treat me. I spent a pessimistic year before I started looking out for myself. After all, it's my life at stake.
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