CaraJ
11-21-2023, 01:14 PM
Hi everyone. Thanks for allowing me to join. I feel somewhat fortunate that I only suffered for a few months before being diagnosed. Some of you have suffered so much longer than me. I got my diagnosis 3 days ago, and I have been totally overwhelmed. Reading some of these posts has helped me feel less alone.
I am 50 and was perfectly healthy per my doctor in March. In Sept, I started running fevers,. lost weight, lost appetite, had joint pain, terrible fatigue. My platelets were high and white blood cells low. After a month, i was hospitalized and they couldn't figure it out. I saw a hematologist who sent me to a kidney doctor after my sed rate came back crazy high. My mom has lupus, and I did initially test positive for that but later the kidney doctor discovered ANCAs. My creatin level in 3 weeks went from a 2.3 to 9 and they immediately hospitalized me with kidney failure. After a lymph node biopsy, kidney biopsy, and bone marrow biopsy, they diagnosed me with Wegeners. I still have to be confirmed with a rheum but that's a few weeks away. I had 2 dialysis treatments which helped tremendously. I also started chemo infusion (Cytoxan) and prednisone in hopes we can get the kidneys to work on their own without dialysis. We will see. Getting this diagnosis was a shock, but reading the posts is helping. Thanks for listening.
I am 50 and was perfectly healthy per my doctor in March. In Sept, I started running fevers,. lost weight, lost appetite, had joint pain, terrible fatigue. My platelets were high and white blood cells low. After a month, i was hospitalized and they couldn't figure it out. I saw a hematologist who sent me to a kidney doctor after my sed rate came back crazy high. My mom has lupus, and I did initially test positive for that but later the kidney doctor discovered ANCAs. My creatin level in 3 weeks went from a 2.3 to 9 and they immediately hospitalized me with kidney failure. After a lymph node biopsy, kidney biopsy, and bone marrow biopsy, they diagnosed me with Wegeners. I still have to be confirmed with a rheum but that's a few weeks away. I had 2 dialysis treatments which helped tremendously. I also started chemo infusion (Cytoxan) and prednisone in hopes we can get the kidneys to work on their own without dialysis. We will see. Getting this diagnosis was a shock, but reading the posts is helping. Thanks for listening.