My Health History with CF

How it started

I was born in 1969 and adopted at 2 weeks old by my mother who was a nurse. I was diagnosed with CF at 18 months in 1970. I had pancreatic insufficient since birth, DNA mutation analysis homozygous F508del North Eastern European lineage, CF Related Diabetes since 1999, multiple sinus surgeries since 1992, several hospital stays, 14 days IV antibiotics and then at home IV antibiotics for mucoid pseudomonas and mucoid staphylococcus aureus, gastroparethesis, ulcerative colitis, allergic asthma, allergic rhinitis, eczema, autoimmune positive IgA, IgG, IgE, and high neutrophil leukocyte ratio and low eosinophils, low PFT FEV1=1.30 in November 2019.

How it's going

I started Trikafta November 2020. This improved PFT FEV1 and weight gain, but continued health decline due to progression of autoimmune syndromes impacting lung, liver, kidney and pancreas. Thankful to celebrate Birthday 54 in 2024! No biological children, but 2 step-sons and 2 step-granddaughters.

I worked full time until 2020, then no work since then due to severe decline in health attributable to severe reaction to Afluria Quad Influenza Vaccine total 60 uf (15 ug Influenza A H1N1, Influenza A, Influenza B Victoria, Influenza B Yamatagu) and Aluminum Hydroxide. Being treated by CF clinic, pulmonologist, endocrinologist, allergist, immunologist, endocrinologist, GI specialist, neuro immune specialist, infectious disease and hematologist doctors.

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