I learned today that I have a disease called anti-GBM disease, otherwise known as Goodpasture syndrome. We’re not sure what triggered it. Typically, one gets symptoms of diminished appetite, nausea, and fatigue. Laboratory findings are worrisome for problems with the kidney. These can include a rising creatinine test and hematuria. I had all of these. Another aspect of my disease was a crushing right-sided headache. It came with tenderness of my scalp and lateral neck pain on the right. I felt as though an ice pick was pushed in my head. My tests were abnormal. I had anemia. My c-reactive protein level was elevated at 150. My sedimentation rate was greater than 100. With the headache, this is troubling for specific type of vasculitis called giant cell arthritis. I also had this which is unusual, but I guess it’s possible.

I was placed on high dose steroids, prednisone 60 mg a day. Within two hours of the first dose, my headache resolved completely. But the kidney performance continued to decline. A host of physicians assessed me on a Saturday afternoon. This included an ophthalmologist, rheumatologist, nephrologist, and a medicine team. The medicine team consisted of an attending, a resident, and a student.

A variety of tests were done. These tests included a head CAT scan. The purpose was to make sure I was not having a stroke or another brain issue. Unfortunately, this was normal. It can’t detect the temple arthritis. A biopsy of the temple artery is needed for this. This procedure has also been done. I had an abdominal CAT scan. The results were somewhat confusing because I had some blockage of my kidney on one side. Still, this turned out to be a red herring and led us astray for a day. With the contribution of the medicine attending and myself, we convinced others about my kidney problem. My main symptom was microscopic blood in the urine. There were also elevated inflammatory markers.

This led to further biological testing of the blood as well as a renal biopsy that confirmed the diagnosis.

A simple way of thinking of this disease is that something triggered my own immune system. It attacked my vascular system, specifically the kidney membrane. This attack led to nephritis.

The treatment will be aimed at slowing down the immune response and knocking out those antibodies. The process will start with a two week course of plasmapheresis. It will try to remove these antibodies from my blood. This will be followed by high doses of steroids. A drug called cyclophosphamide will also be administered. I will need a central line placed tomorrow.

Hopefully this we’ll restore the kidney role so I can avoid dialysis. The only choice if it fails is dialysis. After that, kidney transplantation be considered. This would be a difficult journey for me at this time in my life.

It’s odd in life how one day you’re well and the next day you’re not. Just before me feeling ill, I had a fairly active weekend. I walked a total of 10 miles, but I had not felt quite as well as usual. I desired to have some testing done with my personal physician. This began the discussion, detective work, and a treatment plan. I’ll keep you posted !! FJL

I’ll keep you posted as the treatment goes on and let you know how I’m doing. I thank you all for your support and certainly welcome all of your prayers. Enjoy each day as you never know what tomorrow will bring. FJL