The Tale of Justin's Too-Big Heart
I’m writing to share some personal news and ask for your help. Justin, my partner, was diagnosed three months ago with a genetic heart defect called hypertrophic cardiomyopathy, or HCM for short. You may know of this condition. It’s often cited as the cause when a healthy athlete collapses on the field and dies, later to discover through an autopsy that an unknown time bomb lurked inside them.
HCM is a rare condition, believed to affect about 1 in 500 Americans. Some people live all their lives with HCM and never suffer from symptoms. Others are not so fortunate. When an HCM patient begins experiencing symptoms, there is an 85 percent chance of sudden cardiac death in the two years following the onset of symptoms. Justin began experiencing symptoms about 18 months ago.
At the time, we couldn’t understand why he felt faint and dizzy on occasion. He was active and took care of himself due to other medical conditions. It was disheartening! We pursued the usual routes with general physicians. Then Justin became fatigued to the point he could no longer participate in our infamous bike rides all over the Pacific Northwest, and we were finally referred to a heart specialist.
That was in June 2021, one year after his first dizzy spell and ER visit.
Over the summer of 2021, Justin underwent a barrage of tests to confirm the HCM diagnosis. Meanwhile, we waited for an appointment with yet another heart specialist; this time, one who only deals with HCM cases. We met Dr. Ravi in October 2021, and at that time he shared his prognosis and recommended a course of medical interventions.
What Dr. Ravi ordered for Justin is called a septal myectomy. This is open-heart surgery to correct the genetic defect, which causes a thickening of the heart muscle. A pair of surgeons will perform the operation, removing thin slices of the interior heart wall until the thickened area is reduced. Justin’s procedure is happening this Friday, February 4, at the Providence St. Vincent’s Heart Institute in Portland, Oregon.
I am writing to share this news of my life partner’s illness with you and also to ask for your help.
Justin will be off of work for two to three months while he recovers from this major surgery. He may claim limited short-term disability, but our income will be severely impacted. We also expect our out-of-pocket expenses for this treatment to be $7,500.
To help defray these unexpected costs, we set up a fundraising campaign at GoFundMe. Our goal is to raise $15,000 to help pay for medical bills and help us cover lost income during his recuperation.
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