Health

I was born July 9th 1968. In March 1973 at just 4 years old, I was given food contaminated with the potentially lethal Shiga toxin-producing E. coli 0157 bacteria (pictured above). Symptoms quickly manifested, yet I did not receive the prompt medical attention that I desperately needed. I repeatedly complained about pain and difficulty urinating to my parents. My symptoms rapidly deteriorated forcing my parents to finally take action. I was taken to Dr. Whitcliff in Escondido, California, who, in a grave misjudgment, mistakenly diagnosed me with Scarlet Fever.

Compounding this error, he administered a strong dose of Penicillin, neglecting to verify whether or not I was allergic. The oversight was catastrophic. I am, in fact, allergic to Penicillin. By the following morning, my kidneys had ceased to function. I was battling Hemolytic Uremic Syndrome (HUS), had fallen into a coma (only the most severe cases result in coma - https://www.ncbi.nlm.nih.gov/books/NBK507845/, https://www.cdc.gov/ecoli/general/index.html), and was enduring a severe allergic reaction to Penicillin known as Toxic Epidermal Necrolysis (TEN) — a brutal allergic reaction where the skin swells, thickens, and becomes clay-like in texture. Blisters covered my body, and the top layers of my skin died and pealed away. TEN is often caused by medications, with antibiotics such as penicillin frequently identified as culprits behind this condition: https://www.uptodate.com/contents/allergy-to-penicillin-and-related-antibiotics-beyond-the-basics/print

Clearly, a series of unfortunate events and errors has progressively exacerbated the situation. The inability to deliver timely and suitable care resulted from the negligence of both my parents and the physician.

I was initially rushed to the local hospital, Palomar Hospital in Escondido California. There, the staff faced a terrifying reality: they were ill-equipped to handle the grave condition of a comatose 4-year-old child battling the life-threatening trifecta of kidney failure, Hemolytic Uremic Syndrome (HUS), and Toxic Epidermal Necrolysis (TEN). HUS is the most common cause of acute kidney failure in children. HUS is most often caused by an E. Coli infection. In a desperate move, I was hastily discharged and sent via emergency transport to UCSD Medical Center in San Diego, CA, in hopes of finding the urgent care that I desperately needed.

This event, was noted in the local newspaper which listed my discharge that night. Below is the Escondido Times-Advocate page showing my discharge highlighted.

Fortunately, that night, UCSD Medical Center had Dr. Mendoza on staff, a Pediatric Nephrologist who specialized in cases like mine. I was immediately placed on Peritoneal Dialysis and spent the following couple of weeks in the ICU, comatose. I believe it was at this moment when my family received the news that my chances of survival were between 10% to 20%. Another young girl, who was admitted the same day with the same medical condition, tragically did not survive. Peritoneal Dialysis is a common treatment for acute kidney failure. HUS caused by an E. coli infection is the leading cause of kidney failure in children. The scars from the Peritoneal Dialysis procedure still mark the area just below my belly button. The initial port became infected, was treated and closed. A second port was installed. Below is a current picture of the scars from this procedure:

Approximately two weeks after my admission to the ICU at UCSD Medical Center, I awoke from the coma and was transferred to a standard recovery room. My recovery spanned the following two weeks, culminating in my discharge after about a month-long hospital stay. However, during a follow-up visit a couple of weeks later, I was informed of the need for re-hospitalization due to concerning blood test results, leading to an additional two-week hospital stay, totaling roughly six weeks. Upon hearing the news of my readmission, my mother was overwhelmed with emotion and began to sob uncontrollably. I comforted her, assuring her that everything would be alright and that it was only a matter of weeks. My mother's ability to cope seemed to be quite limited.

For the next couple of years, I continued my visits to Dr. Mendoza at his private practice. At the conclusion of each session, he would caution my mother and I about the potential for organ-related issues and possible organ failure in the future, urging us to be vigilant for any symptoms. I remember Dr. Mendoza mentioning that the liver, kidneys and other organs may have problems later in life. These warnings invariably brought my mother to tears… I'm not sure if she could fully comprehend everything Dr. Mendoza said, given how much she was crying. It seemed to me that no one in my family was aware of the information shared with us during those appointments. Regrettably, my parents did not heed his advice, neglecting to monitor my health for signs of trouble. My mother was the only one to accompany me to these appointments. One of my parents would often tell me something to the effect of, I’d better not get sick because they were not able to obtain medical insurance for me and couldn't afford to take me to the doctor. These were the days before the Affordable Care Act, which meant that my previous kidney failure had branded me with a pre-existing condition, effectively barring me from obtaining medical insurance. Failing to meet the medical needs of a child with a chronic illness constitutes neglect and is reprehensible. Yet, within my family, a pervasive code of silence and denial seemed to prevent any action from being taken.

I lack my medical records from the E. coli infection due to being a minor, merely 4 years old at the time. The responsibility to obtain and retain these records fell to my parents, a task at which they regrettably failed. 6 years later, the legally mandated period for the retention of medical records lapsed, relieving the medical facility of the obligation to preserve my records. I was just 10 years old at that time and was unable to obtain the records on my own. I can recount the events related to the E. Coli infection as I remember a portion of it. Additionally, I have consistently requested family members who witnessed the events to share their perspectives with me. I recently reached out to the UCSD Medical Center's records department to inquire about the availability of records from a specific period. The representative assured me that they should still have my records from this event on file. Following their instructions, I submitted a records request form. However, after a couple weeks, I was surprised to receive a letter stating that no records could be found. It appears that while the facility possesses records for other patients treated in 1974, my entire file has mysteriously disappeared. Quite peculiar...

I've been asked if I know what the origins of the E. Coli infection was, a topic that has never been definitively addressed by my family. They've neither identified nor hinted at a probable cause. In fact, they consistently seemed uncomfortable whenever I broached this topic. During that period, my parents seemed deeply immersed in a back-to-nature, do-it-yourself lifestyle. This involved, making Christmas decoration and toys by hand, serving raw unpasteurized milk and grinding meat at home using an antique meat grinder, which was situated atop a mobile table in the kitchen. The table itself featured a metal top, coated in a white porcelain-like finish. I recall wondering how old this table was, noting how the porcelain-like finish was chipped in places and worn smooth, revealing the blackened metal beneath. Given these practices, especially the consumption of raw milk and the home meat grinding, it seems most likely to me that these could have been the primary sources of the E. Coli infection. The most common causes of a E. Coli infection are: Undercooked Ground Beef, Unpasteurized Milk and Dairy Products, Contaminated Fresh Produce, and Contaminated Water: https://www.mayoclinic.org/diseases-conditions/e-coli/symptoms-causes/syc-20372058

See more research on long-term effects of E. Coli 0157 infections: https://www.gwiant.com/health-research

At around 9 years old, I began experiencing symptoms. I endured acute pains in the upper right quadrant of my abdomen, which were later attributed to large gallstones navigating through bile ducts too narrow to accommodate them. Additionally, I exhibited signs of compromised liver function, difficulty in hormone regulation, and possibly overactive gonadal and adrenal glands. In my early high school years, a friend's father, a physician, graciously offered to perform a blood test. The results suggested potential liver damage, hyperactivity in my gonad and adrenal glands, and abnormal kidney function. I provided these findings to a parent, but, unfortunately, they took no action, and I received no medical care.

Late Teens and Early Twenties

During my teenage years, my parents failed to meet my medical needs, ignoring my complaints of recurring sharp pains in the gallbladder area and signs of hormonal imbalances. As I transitioned into my late teens and early twenties, what I would eventually discover where the symptoms of Hyperthyroidism, hormone imbalances, and liver disease continued to worsen.

• Weight loss/difficulty maintaining my weight, increased hunger

• Racing/pounding heart

• Anxiety like symptoms

• Sensitivity to heat

• Changes in behavior that I would later discover are associated with hyperthyroidism and ammonia intoxication

• Voice changes

• Behavior changes that indicated hormone imballances and ammonia intoxication

• Sudden piercing pains in gallbladder/liver area

At the age of 18, I impulsively purchased a motorcycle, a decision I soon regretted following a crash. Thankfully, the injuries I sustained were minor, with no fractures. Realizing the risks, I promptly sold the motorcycle and embarked on my college journey. The person who bought the motorcycle was unable to afford the leather jacket I was also selling, and he didn’t have one of his own. Knowing the importance of proper protection, I couldn't allow him to ride without it, so I gave him the jacket.

At 19, I lived in an apartment with a friend from high school. He frequently invited me to join him at the community hot tub, but I found that I could only endure its intense heat for a few minutes before needing to plunge into the pool to cool down. He often joked about the considerable amount of food I bought and consumed each week. I would explain that, despite my best efforts, maintaining my weight was a struggle for me. No matter how much I ate, gaining weight or building muscle mass seemed an impossible task. I would eventually learn that sensitivity to heat, an accelerated metabolism leading to weight loss, anxiety like symptoms, and changes in voice were all indicators of a thyroid disease called Hyperthyroidism.

In 1992, I started experiencing an additional symptom indicative of liver damage, hyperammonemia. My career in the tech industry began in 1994, and by the following year, I had secured health insurance through my employer, a significant milestone that allowed me to seek better quality medical advice for the symptoms I had been enduring. Unfortunately, despite repeatedly sharing these symptoms with various doctors, my efforts to receive care for symptoms suggestive of gallstones, liver damage, hormone imbalance, and hyperthyroidism were not successful. Without care, the medical issues and associated symptoms continued to worsen.

By my late twenties, the task of accurately conveying the breadth of my symptoms to doctors was becoming difficult, given their extensive nature. Over time, I realized that I was grappling with multiple medical issues simultaneously:

• Hyperthyroidism, manifesting in weight loss, a racing heart, heat sensitivity, and anxiety like symptoms

• Liver damage hindering its functions, such as hormone regulation (leading to hormone imballances), bile production (leading to gallstones), and protein digestion (causing ammonia intoxication)

• Kidney damage/disease

Each of these conditions contributed to a complex health picture that my healthcare providers failed to diagnose or address.

In 2000, during my tenure at a tech startup in San Francisco, I had an appointment with a chiropractor. He suggested applying hot towels to my back, which I refused due to my acute sensitivity to heat. This prompted him to ask if I was experiencing any other symptoms. After I described my symptoms, he proposed that I might be suffering from Hyperthyroidism and gave me his business card to show to my doctor, hinting at his suspicion of my condition. Heeding his suggestion, I visited my doctor who then ordered blood tests. The findings validated his suspicion that it was indeed Hyperthyroidism.

More to come soon…