Janeice’s Story

I Was Kissed, But Not by A Frog

CampingVacations were a priority in my family of eight. Growing up during the ’50s, ’60s, and ’70s in middle-class America seemed pretty traditional; church, public school, extracurricular activities, and summer vacation. Yes, everything that happened during the school year validated that no matter what, there would be a family vacation in the summer.

You can imagine the process of preparing a family of six children for the adventure my dad had planned for months, taking us to new and undiscovered territory, one that he had not even experienced.

In those days, it was not uncommon for families to tent camp on vacation. All the national parks had camping facilities and there was no big chain hotel. Tent camping was the most affordable way to travel, and my family took advantage!

We had the baby blue and white Plymouth station wagon with a homemade topper and a large army green tent. A red and white cooler, a Coleman stove, shared suitcases, sleeping bags, flashlights, and bug spray were methodically placed for easy access.

[dropcap]I[/dropcap]n the summer of 1965, our family anxiously set off for an unfamiliar adventure, one that would change my life forever. One of my older sisters, Diana, had taken Spanish the previous year and she was going to be our interpreter. Yes, we were off to Mexico. We left Nashville and camped along the way to Glorietta, N.M., for a week at the Baptist Conference Center. Following that, we continued our journey, traveling on two-lane State highways, through the deserts, stopping to camp at the

Janeice Smith

Grand Canyon, Albuquerque, Petrified Forest, Painted Desert, Carlsbad Caverns, and on into “Old” Mexico.

We stayed at a luxurious resort in Monterey, Mexico, which was less expensive than camping in the US! We were truly in heaven! Souvenir shopping, a bullfight, windows down while driving through rural Mexico, encountering dust flying as we drove along. 

The sights were endless, watching young dark-tanned and half-dressed children playing in the road, chickens and goats roaming freely, and hefty women sitting outside small huts, weaving colorful blankets or making silver and turquoise jewelry. These images will forever remain in my mind. A word of caution to not drink the water, was welcome as it meant more soda, which we seldom had the pleasure of at home.

Continued

As we headed back to Nashville, we stopped in New Orleans and that is where my life took a detour. I was feeling tired and soon began running a high fever. My eye was severely itching, started swelling, became red and puffy, and finally infected. My parents knew this was something serious. They drove as fast as the state highways would allow, (no interstate in those days), heading home to rush me into the local Children’s Hospital.

The Children’s Hospital was brand new then and I was one of the first patients. My dad worked at the hospital and university campus as the Maintenance Supervisor and most of the doctors knew and respected him. I was their mystery patient, with a fever as high as 107 for around two weeks, they tried everything they could think of. Isolation, ice baths, iron lung, antibiotics, you name it. Yet, nothing seemed to bring my fever down or relieve the eye infection.

Finally, to everyone’s amazement, the fever subsided and following several more days of stabilization, I was released to go home with essentially little or no explanation of what caused my illness.

GraduationAs the following years passed with a seemingly ordinary life, including high school and college graduation, followed by marriage, career, and family, I experienced essentially normal health. It wasn’t until I was in my early 60’s, in about 2015. I began having unusual swallowing issues, similar to acid reflux. I was prescribed several medications but my coughing and reflux symptoms continued to grow worse. My physician referred me to an Ear Nose, and Throat specialist at the University of Florida, Shands Health and Medical Center. This new physician confirmed my symptoms to be reflux not caused by gastric acid production, yet to the contrary, my condition was caused by a nerve that triggered similar discomfort when swallowing to acid reflux disease. He prescribed a medication, which typically is an anticonvulsant, and almost immediately my coughing was reduced. However, two days later, resulting from my continual violent coughing, I suffered a detached retina and unfortunately, followed by medical rejection. Even another reattachment and complicating rejection, which for most would suffice, my circumstance ultimately led to six retina surgeries. Ultimately, I was left with severely blurred and distorted sight in my left eye.

Three years of adjustment to the loss of vision in one eye and still on medication for reflux caused by an inflamed nerve is how I entered into and began my retirement years.

Don’t get me wrong, retirement is bliss! We traveled, built a new home, reconnected with old friends, and enjoyed time with family. Who could have possibly envisioned how COVID-19 would enter and forever change all our lives?

Following several months of “COVID” isolation, we began to long for time with family, even if it meant in small numbers.

Certain that we had already endured COVID while cruising in December of 2019, Greg and I decided to have the antibody test which would show we were immune and also would allow us to help others by donating our plasma. We made an appointment to donate blood with the local Blood Center and confirmed they would perform the antibody test.

Retirement

Two days following the blood donation, we checked the portal to see the results and both of us were negative for the specific Covid antibodies. That was a disappointment but did not prevent us from seeing family, as long as they had been tested and were fully vaccinated.

Surprisingly, about two weeks following testing, I received a letter in the mail from the testing center. I looked at it and asked my husband, Greg, “Why did I get a letter and you didn’t?” I almost threw it away, assuming they were going to thank me for donating blood and ask for another donation. Instead, I opened it and read, (essentially) the following:

Dear Mrs. Smith,
Thank you for donating blood through the Blood Center. However, further testing of your blood showed positive for the disease Chagas. This is a disease that is very rare in North America so we conducted a second test with the same results. This is a very serious disease and we recommend you contact your primary physician immediately. Any further expenses incurred will be your responsibility and we will not be held accountable for any additional medical expenses. We have enclosed information about Chagas from the CDC for your information.
Sincerely,
Blood Center

You can imagine my reaction. At first, I didn’t understand what I was reading. I read the letter again, read the enclosed page from the CDC, and panicked. Greg and I both began researching online. What the heck was Chagas disease? Nothing made sense. This disease is pretty much isolated to South and Central America. A bug that carries the disease comes out at night, generally in rural areas, where people live in huts or homes with cracked walls. The bug travels through the thatched roofs or cracks, and crawls onto the skin, most often the face. It then feeds on saliva, poops, and when the chosen person, usually a sleeping child, rubs the poop into their eye or an open wound, they become infected.

Romaña’s sign
Photo of a patient with Romaña’s sign. Photo courtesy of WHO/TDR Image Library. TDR photo, Brazil, 1991.

As I was reading this, a picture of a little girl with dark hair and a big, infected eye caught my attention. That was me! Memories of my illness started creeping back. But I needed more. I needed validation from someone else.

My parents were both deceased so I couldn’t ask them. I decided to start with my oldest sister, thinking she would remember better than anyone. When she answered the phone, I said, “Diana, do you remember that year when we went to Mexico on vacation and I got sick?” She said, “No, I don’t remember much about that vacation except that I was supposed to be the interpreter and I had only had one year of Spanish.”

Disappointed, I called my brother. “Bruce, do you remember the year we went to Mexico and I got really sick and was in the hospital for two weeks?” He said, “I don’t remember that. I do remember going to a bullfight and Daddy was so disgusted that he got up and left.” On to the next sibling. “Joyce, do you remember the summer we went to Mexico and when we got back I was in the hospital for two weeks?” No, I don’t remember that. That was the year I discovered boys!” I was losing hope! I called Connie. “Connie, do you remember the year we went to Mexico and I got sick and was in the hospital for two weeks?” “Well, I do remember something about ice baths and that we couldn’t visit you in the hospital. Mother went every day but we couldn’t go.” Ah ha! I was getting somewhere. Yes, Mother did come every day and yes, I did receive ice baths. I was in isolation and everyone on my floor wore face masks. Next, I called my twin sister. “Bernice, do you remember the year we went to Mexico on vacation and on the way back I started getting sick?” “And you got that terrible eye infection! I remember I couldn’t see you and I got jealous because you were getting cards and presents from the ladies at church and I wasn’t getting anything!” Well, there ‘ya go! That was the summer of 1965. Hospitals do not keep medical records longer than ten years so several attempts to get mine from the local Children’s Hospital were unsuccessful. The family eventually did come through via a discovered letter from my aunt during that time which confirmed my mystery illness.

Thus, began my year-long journey to find a doctor who would understand and explain what had happened to me and what to expect in the future.

My primary doctor felt it best to refer me to an infectious disease doctor, due to the rare nature of diagnosed cases and limited educational medical literature. The infectious disease doctor was intrigued with my case, yet had never treated the disease, again due to its rare nature.

Chagas Disease

Something told me I really needed to find someone who was familiar with the disease and its treatment. I researched further and finally found a doctor in Boston who was knowledgeable and experienced in the treatment of the disease. He was so encouraging! I was willing to travel to Boston if necessary but after a few virtual appointments, he helped me find a doctor in Gainesville at UF Shands who specializes in the management of Chagas disease. What a miracle to find, Lawrence Beatty, M.D.. Right here at home! Dr. Beatty instantly became my most aggressive advocate. His patient approach and teaching manner has helped me understand the damage the parasite had done to me. The parasite infection affects the heart in most people. Extensive testing in my case ruled out any heart damage. The other area of the body affected by the parasite is reported in medical literature to involve the esophagus and digestive system which is classically what had happened to me.

Triatomine

After unsuccessfully seeking to be included in a clinical trial, Dr. Beatty found treatment for me and the hope for a cure ensued. In April 2022, I began treatment with a little pill taken orally at home. Lab samples were drawn every week for six weeks, and then my therapy concluded. After six months, follow-up labs revealed that I am now free of Chagas disease! I now have comfort in knowing the root cause of my reflux disease and how to manage it.

Medical researchers estimate over 300,000 Americans are infected with Chagas yet only 1-6% are diagnosed. The infection may cause a damaged heart and if one were to resultantly die of a heart attack, possibly no one would suspect the causative reason or how it could have been prevented. Further research and education on Chagas in America is critically needed. The families and healthcare providers of people who die from this disease deserve to know what caused their death. Further, those who unknowingly suffer or are unaware they are carriers of the parasite with the potential to infect others, deserve to know what is going on in their body and receive timely and appropriate treatment.

May my journey open many eyes and create awareness so others will not suffer needlessly

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