Shano

71d

Hi y’all, My name is Shane and I was diagnosed with wegners Vasculitus (GPA) in 2020! I was the healthiest I’ve ever been eating a strict paleo diet and jogging 3-5 miles every other day! I started getting symptoms in January of 2020 with a bronchitis diagnosis by my Gp and I was coughing up blood took some antibiotics and it subsided, in March of 2020 just 2 months later I started having major pain in my ankles(had to stop jogging it was so bad) my heels got blood bruised from just standing to long! Eventually I had to walk with crutches just to get to bed! This continued through the middle to end of May 2020! The week before my birthday I (besides my swollen painful ankles and feet) had a quarter sized sore developed in my throat. Went to a immediate care and they tested me for strep, it was negative! By Friday May 8th the day i decided to go to the hospital I was feverish mildly the hole week! That day May 8th I felt like death and I knew something was wrong! By the time I was in the hospital my fever spiked at 103, they E-rayed my chest and thought I had pneumonia! I was admitted after that! My CRP was extremely high! As the days went on and I was embracing death and crying and praying daily! The 4th day in I was passing blood and protein in my urine And still had the excruciating pain of the pain/sore in my throat! The 5th day I woke up at 2am in the morning and coughed up a lot of blood told the nurse then passed out! No one could diagnose me after countless blood draws! All the while I’m grey, week can’t eat can barley drink and now my hemoglobins are at 4 from 14! The 7th day I wake up to my doctor telling me this disease has a 90% mortality rate, then I passed out! I woke to my wife crying next to me and I whispered “10%” chance of living as I silently wept. The doctor said “No 90% mortality rate if left untreated”! I said quietly when can we start? 9 months on cytoxin “oral chemo” and 60 mg of prednisone! By Gods grace I’m still here!

Mycophenolic Acid

Clonazepam

Wegener's granulomatosis

Generalized pain

Amitriptyline

View all
  • Mono2022

    65d

    WOW! You’re a warrior!! It took a while for my diagnosis too. From being in complete health and shape I started taking steroids that crushed me down. Now I’m much better, but still suffer from a few symptom (ankle pain and sinusitis)

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