The first time I saw petechiae was in 2021. March. Red spots spread across my hands, arms, legs in clusters. I put in a call to my general practitioner's office and an appointment was scheduled with her physician’s assistant (PA).
At the appointment with the PA, a day or two later, I showed her what I called a “rash,” to which she responded, "A rash! It’s petechiae". She requested lab work.
I went home, and, in the middle of the day, I went to bed, feeling too weak to even sit or stand for longer than a few seconds. I didn’t hear the landline phone ringing nor the laptop’s notification beeps for sometime before the phone ringing, waking me up. It was a nurse from the hospital: You have to come back. Immediately! Go to the ER!
I didn’t understand her and insisted that I had been there earlier, saw the PA, had my blood work… Your platelets are low! 8K! Your platelet count is 8K!
Platelets! Too low!
For almost four years, I was attentive to kidney damage. My calcium count. Calcium leakage from the bone entering my kidneys. Dialysis. Maybe a transplant. The Multiple Myleoma is one thing, renal failure another.
I hadn’t been attentive to my platelet count. A normal platelet range is between 140 and 450K. Last year, March 2012, my platelets were at 8K.
Almost a year later, I was thinking, here I go again. It’s around 6:00 am on a Sunday morning, February 20th, and I had barely slept two hours. Yet another new neighbor in the apartment below, this time, believes he has “freedoms” and rights. And what right does a Black woman have that he would have to honor?
As I stood up from my bed, I noticed the room was spinning, but not as badly as two weeks before when the spinning was so bad I could barely rise from my bed. Then, I immediately called for an ambulance. But this morning of the 20th, I made it to the bathroom, positioned myself over the basin, and blew my nose. I tossed the tissue and grabbed a towel, and, with the other hand, as I threw the bloody tissue in the toilet with one hand and grabbed a towel, placing it in front of my nose. With the other hand, I flipped the light switch.
Petechiae, again. And there was more of it than the year before. And the bleeding—it was turning a peach-colored towel red.
That’s petechiae. Signaling internal bleeding. It’s what my general practitioner's PA tried to warn me and the oncology department about: Your red blood count (RBC) is the lowest it’s ever been. 3.83. (It’s needs to be 4.20, at least!). You’re losing blood!
The PA, this time, a Black woman, followed up on my ER visit the day before, February 3rd. Vertigo that morning was extreme, and my heartbeat was in the 40s, according to the ER doctor. The PA also had my blood work from earlier that morning on the 4th. The PA wanted to see me. You need to come back! When I explained that it wasn’t possible for me to do so, I was asked if I wanted to have a virtual meeting. I agreed.
Your red blood count is low!
All business, the PA informed me that she was contacting the oncology department immediately. She shifted in her seat turning as if to use her phone to reach out to oncology. Some weeks later, I read in her notes that she recorded that I had complained of “extreme fatigue” and “shortness of breath.” The patient’s RBC has declined, she added, since the beginning of January, 2022. I was showing signs of anemia that has worsened since the beginning of January.
You should hear from someone soon.
I didn’t hear from anyone.
The following week, I called the hospital two days in a row, but, I’ve been too long a “marginalized” activist to know that the senior patients with private insurance who aren’t solely dependent on Medicare are prioritized. I depend on Medicare. So the response is polite, but curt: "The doctor received the message from the PA."
I began calling the general practitioner's office for a little more than a week only to be “diagnosed” as having allergies or sinuses. I spoke with a series of nurses, each suggesting that my headaches and earaches, my general malaise was a matter of allergies. Maybe sinuses. Have you tried Claritin? I didn’t try Claritin! What about Sudafed? I tried Sudafed only to end up wide-awake all night. Earwax?
What about an appointment with an actual doctor? I continued to call, knowing all too well that I’ll come off as the “angry Black woman.” Again. The one with the education and the questions. The one demanding to see a doctor. Again. When I tried again to set up an appointment with the doctor, I mentioned a comment the pharmacist made regarding the prescribing of Sudafed for my complaint. A young voice informed me that the pharmacist wasn’t a doctor. Oh, no! Well, what did I know? What did the pharmacist know? She knew it all!
By the middle of the week, the nursing staff decided to set an appointment for Friday, the 18th. Maybe you have an ear infection! Now I have an ear infection?
What I do have is a history of Idiopathic Thrombocytopenic Purpura, ITP, “abnormally” low levels of platelets as a result of “excessive” bleeding. I always have to look up these terms when I return home because it’s usual for me to be granted less than ten minutes with my oncologist. To be frank, according to the graph in My Chart, my platelet count has been dropping steadily since my March 2020’s hospitalization and boost of steroids. By December 2021, the count was below 100, at 83K. More steroids (not prednisone). And steroids have their own side-effects and risks to organs, namely, the liver.
The appointment for that coming Friday was set with another PA. I wanted an appointment with the doctor, the GP. I understand that doctors are busy. Doctors are over worked. In the corporate model, I’m not a “valued” patient. And, no, I’m not angry, but I refuse to be a cardboard figure. Obedient. Following the orders established in the manual, How to be a Dutiful Follower of the Reich! I assumed I at least lived in an aspiring democracy, despite the willingness of America to entertain the codification of laws making it difficult for Black Americans to vote. I called the GP’s office, the patient-relations director, the oncology social worker, and anyone else who would listen and assure me that I would see a doctor.
Petechiae didn’t accompany me at my appointment with the GP on Friday, 18th. In fact, it was as if I hadn’t any issues at all, at least, not significant enough to demand this doctor’s attention. Although she made me feel as if I were her only patient of the day, I, nonetheless, felt foolish. Maybe, I thought, I over reacted. I mentioned feeling a little pressure on the right side of my head. That ear ached for those two weeks. The GP checked my ears. They are clean, she joked. I was prescribed antibiotics.
When I left the hospital that morning, my platelet count was at 171K.
At the ER, the morning of February 20th, however, the platelet count was 0!
After contacting my oncologist, who ordered two-units of platelets, the ER doctor and nurses began administering the blood transfusion, a slow drip at first to make sure I wouldn’t have an adverse reaction. Once the platelets reach 1K, I was transferred to my hospital where the transfusion of immune-globulin continued until after 10:00 pm that night.
Your red blood count is too low… You are losing blood…
How well do I know that Black women are never given the benefit of the doubt, no matter their status in life, no matter their age, no matter their lived-experience.
Medicare for all is imperative. The system as it is is undemocratic. But developing democratic values for all should and must take precedence if change is to be effective and lasting. Enough Americans must ask the question, "What is it to be human?"
The stress of being Black in America is real. As real as it is obvious that doctors and nurses serve as clogs on a wheel, working faster and harder to assist, ultimately, in the profiteering for a few at the top of the health care industry.
How many Americans have the time to read, to watch a hummingbird in flight, to admire a gallery wall of photos or paintings, to watch children express excitement on learning a new musical instrument? How many have the time to sit with a Hubble image and just be amazed? How can we speak of equality when so many Americans are deprived of life, even while slaving away to realize someone’s bottom line?
And what about the millions of Americans with serious illness but without private insurance?
As of my last appointment, a splenectomy is out. Now, the doctor is stating that the operation is too risky and afterward, I would be susceptible infections. But a drug, taken daily, for life, could regulate my platelet count. There’s still that chemo pill that isn’t like chemo. No hair or weight loss…
Treatment, however, for my cancer will ultimately be “cost prohibited.” A doctor told me this recently. It didn’t warrant a discussion between doctor and patient or comment from me. But then the doctor-patient relationship has long been corrupted. The doctor-patient relationship is continually being developed in a board room. Doctors and patients move in and out of exam rooms, in some cases, passing Crosses depicting the Crucifixion of the marginalized and sacrificed; yet, what matters most is the almighty dollar surrounding the encounters between doctors and patients.
Americans claim to be living in a bastion of democracy, for equality. In fact, Americans settle for what permits corporations to thrive and to expand their capital. And, thus, corporate power over life. Awash in inequality, we maneuver in contradictions.
As with any other institution driven by capitalism, in the health care industry, inequality is inherent. It makes people suffer. It kills. Someone may have a birth defect or, be in their senior years, developed a disease, but all should be entitled to health care that treats all patients as human beings. No one is marginalized because of their insurance plan or lack of an insurance plan.
Equality is a cure, but, it’s also the poison. It’s within the system, the latter serves as an illusion of equity, while marginalizing the promise of a society committed to the principles of democracy. It’s to the detriment of democracy when capitalism is in play.
What will we do to end capitalism’s reign on our well being?