Goodpasture Diagnosis

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Welcome Dustin! Glad you are going strong and fighting it, don’t give up. It’s a battle for sure. I was just misdiagnosed with pneumonia and lupus in November this year and ended up having to be life lined by helicopter to a bigger hospital and was intubated. I was in an medically induced coma plus completely paralyzed in a rotation bed for 7 days on full life support, on a full gram of steroids 3 times all together and they didn’t think i was going to make it. The good pasture syndrome attacked my lungs and caused bruising and had alveolar hemorrhaging in my lungs and that caused my lungs to fill up full of blood and my oxygen had decreased to 68 before they intubated me. After 2 days of being in the coma they gave me chemotherapy and that saved my life. I woke up and ended up being in the ICU for 16 days total bed ridden until i could regain strength and move to a regular floor in hospital. I now have to continue getting chemotherapy once a month for 3 months as of now plus I was sent home on a very high tapering dose of Prednisone. I’ve relapsed twice and have been in admitted in the ICU 3 times in the last couple months. When i start to taper down on the steroids my immune system isn’t strong enough still to handle it so i start coughing up more bright blood and my oxygen drops so they said i am in a trial and error stage with trying to figure out what dose will contain this disease because it is dangerous to be on such a high dose of steroids for too long. The chemo is supposed to help stop the hemorrhaging in my lungs but it’s been a battle for sure and i had to increase my dose again today because the blood came back. Does anyone have any advice or tips? My doctors are doing everything they can but i am to the point of mentioning any medical research that has helped someone in this similar situation. I’m very scared and not able to work and they want me on disability. I’m 26 years old and they don’t know what has caused this. No family history either. It’s crazy. I’m so blessed and thankful to be alive and great full for this group to be able to hear everyone’s experiences and what has helped you all keep your strength to fight this rare disease!