First off, such deep gratitude for those that have checked in, helped out, and encouraged me to be above board and honest about what has gone on in the last 3.5 weeks.

As most of you know, I collapsed Thursday, January 19th in Pacifica. While regaining consciousness I passed out again. Luckily, I was meeting friends that are also doctors, some of which know my short & long term health issues. I had recently started blood pressure medications, so out of caution I was taken to Seton Medical Center.

Altho there were some initial diagnosis, I was also prescribed more blood pressure medications that, unbeknownst to me, caused rapid edema, which lead me to self discharge that Saturday. In retrospect, Stanford cardiologists said openly I was most likely prescribed these medications because I’m African American, and Seton’s healthcare team has little demographic experience treating African American patients.

The edema progressed til my left side of my body showed fluid retention on Monday, January 23rd. I was also noted as being severely iron deficient at the same time. In the 2.5 weeks I spent in Stanford’s Cardiac unit, I was diagnosed with heart failure. To point out how severe the fluid retention was, I entered Stanford Emergency on 1/23 at 211lbs. As of this morning I am 187lbs.

This heart failure is one part I’ve always had a genetic defect that had gone undetected for 40 years, one part viral infection to highlight the defect (we’re still in a pandemic, y’all) and another part life stress; juggling elder care of anyone is stressful, an ornery, still abusive parent is a lot while trying to piece together income from contract work. Managing all of this as an unpartnered, queer Black non-binary person challenges ones ability to stay sane, nevermind graceful through all of these waves.

Most of my time at Stanford was reducing my blood pressure and seeing which modern heart medications worked as my blood pressure fluctuated wildly + my resting heart rate persistently stayed high. There was the double concern of also treating the iron deficiency + testing my GI tract for ulcers & cancer that ultimately lead to the diagnosis of diverticulitis.

However, because of the way my heart is defective, it was recommended that I receive an Implantable Cardioverter Defibrillator (ICD). There’s too much possibility that my heart is prone to arrhythmias that can lead to cardiac arrest/death in the future to have risked being discharged without one installed. Because medical records between Seton & Stanford do not communicate with each other, it is unclear whether Seton ever arrived at any conclusive stance on an arrhythmia causing the syncope incidents.

While I’m happy that treatment is going well, it means a remarkable reduction in my ability to work, do elder care on top of new and significant financial burdens with new prescription drugs, medical bills, notably the EMT/Seton hospital visits not covered by insurance & necessary dietary changes with a drastic reduction in my ability to generate income for the next six weeks (optimistically) to the next three months. The new meds, and recovery from surgery also have a significant impact on my energy levels.

Any support is much appreciated as I continue to wade through doctors appointments, new treatments and potential new medications and adapt to life with a manageable but truly life-changing chronic condition.