February 7, 2020.
Another multiple appointment day. The first was with the lab at the hematology office and because my hemoglobin was 10, I did not get an EPO shot today. After that, I headed over to Women’s Hospital for a mammogram because life still goes on. (Ladies, you current on your mammograms? If not, make that call today.) Then after that, back downtown to see the nephrologist.
The night before the appointment I saw the results of the biopsy in the patient portal: “Proliferative Glomerulonephritis with Monoclonal igG3 Kappa Deposits.”
Of course I googled it, but there wasn’t much information available. Most of the info that was available was locked behind paywalls. And the rest was mostly just abstracts in medical journals. It was all very much over my head. I did find one article that had the word “treatment” in the title. I paid $37.00 for access to the complete article. What I learned was that this was a new and rare kidney disease. There was no known cause. I also learned there was no cure but there was a treatment that had shown some promise.
When I met with the doctor, her prognosis was grim. She said that most people with the disease end up in stage 5 renal failure (dialysis) within one to two years. She didn’t seem too impressed with the treatment regimen I had read about. She said she only had one other patient with the disease, a man in his 70s who wasn’t doing well.
She also told me that I should consider going out of state for treatment because I wouldn’t find anyone in New Mexico with experience with the disease. She suggested I call Mayo Clinic and other university hospitals in the southwest. She gave me another article to read, different than the one I downloaded.
She also upped my blood pressure medicine from 10 mg of lisinopril to 20 mg. This wasn’t for my blood pressure (which has been really good) but for the kidneys. She ordered labs and another 24-hour urine collection; I was to see her back in one month. I was pretty stunned by her doom and gloom reaction. Perhaps it was warranted, I don’t know. I guess I just assumed there would be a cure for this. I mean I’m 51. End stage renal disease in one to two years? And how long have I had it? It was a lot to absorb. And I had a lot of homework ahead of me.
I don’t even remember the drive home.