I didn’t have this on my 2020 Apocalypse Bingo Card. Last week, my 28-year-old stepson Andrew had a stroke.
While this isn’t my story to tell, and Andrew is an extremely private person, I want to raise awareness of a form of vasculitis called granulomatosis with polyangiitis (GPA), formerly known as Wegener’s. GPA is a rare disorder characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues. Besides potential damage to the kidneys and respiratory tract, other serious complications may include vision or hearing loss, heart disease, and stroke. There is no cure, and patients with GPA will experience remission and relapse throughout their lifetime.
We don’t know how Andrew contracted this rare disease that affects just 3 in 100,000 people, but since July 2019, it has nearly cost him his life three times.
I have known Andrew since he was one and have been his and his brother Kevin’s stepmother since 1996. When his father and I divorced, we agreed that our blended family would remain the most important thing in our lives and we have honored that agreement for nearly ten years.
The last time I saw Andrew was a few weeks before Christmas. He and Kevin met me for brunch in Pittsburgh on their way home from visiting their father. Larry and Kevin tried to prepare me for how Andrew’s appearance had changed, but I was shocked to see my tall and once incredibly fit boy so thin and pale. His once robust appetite was reduced to a bit of yogurt and granola. That night, after their long drive back to central New York, Andrew was in renal failure. He has been on dialysis ever since and is on the list for a kidney transplant.
The stroke has set back that timetable, however. Right now, there are more pressing physical issues that he needs to address like learning to speak clearly again and walking unassisted. His mental health needs attention, too. While Andrew has maintained his sense of humor through much of this, he is frustrated and afraid. He is unable to work and is on long-term disability. Because of covid-19, he has no real social life. If not for his cat, Zelda, he would be completely alone most of the time. We can’t visit him in person, although his father, mother, and brother have been allowed to see him for a few minutes each day in the hospital this week.
My birthday is in mid-August and soon I’ll create a fundraiser for the Vasculitis Foundation on my personal Facebook page. If you’d like to make a donation directly to the Vasculitis Foundation, click here.
If you’re interested, here is one of many blogs and columns I’ve written about my stepsons over the years: The Boys Are Back in Town. I love them both so much, and to see one of them suffering like this is incredibly heartbreaking. But thank you for reading. It helps knowing others are listening. I hope this finds you and yours safe and healthy.