Defenseless but Fighting: A Personal Battle with PFAS and Infertility

PFAS is a group of chemicals known scientifically as perfluoroalkyl substances. Even more concerning, according to the CDC, is there are more than 9,000 different types. These include PFAS, PFOS, PFOA, and others. PFAS chemicals are incredibly stable both chemically and thermally. These are forever chemicals, meaning they bio-accumulate, bio-magnify, and will not degrade. These substances are in everything from carpet, furniture, camping gear, makeup, non-stick cookware, firefighting foams, fabric, and firefighting gear. These chemicals are in every living organism and virtually every body of water. As a 14-year Fire Lieutenant, I have been heavily exposed to PFAS. Here is my story.

In May 2020, my wife and I thought our dream of having a family was about to come to fruition. A short time later, we quickly realized that wasn’t the case. My wife woke me in the middle of the night, stating that she had intense abdominal pain, severe cramping, and heavy bleeding. She was 10 days late, but never showed a positive pregnancy test. She informed me she thought she was having a miscarriage. Unfortunately, all this was taking place during a global pandemic. We immediately called my wife’s OB to be told that they weren’t accepting patients. After many phone calls, her doctor finally agreed to see her. Initially, the focus was on my wife. After many invasive and humiliating tests, we were surprised to learn that no abnormalities were found. We never found out whether or not she had a miscarriage. The focus quickly turned to me. I was immediately referred to EVMS, where multiple blood tests and semen analyses were ordered. Ultimately the results from those tests were heartbreaking. They found no sperm and noted abnormal hormone test results. What followed still seems like a blur.

First, there was a brain MRI. The results from the brain MRI came back and showed a tiny benign tumor on my pituitary gland. The tumor was ultimately ruled out as an issue and deemed not a concern — next, more rounds of bloodwork. Then, genetic testing is followed by more physical exams. No abnormalities were noted during my genetic testing, and no deletions were reported from my chromosomes. I then underwent hormone therapy via Clomid to increase my testosterone. I’m still recovering from what Clomid did to my body. I seemingly gained 60lbs overnight and always felt like I wanted to crawl out of my skin. My urologist then suggested doing a testicular biopsy. The testicular biopsy was scheduled for December 3, 2020. That biopsy would serve two functions, to check for testicular cancer and look for any sperm residing in my testicles. Unfortunately, again the results were not what we hoped. While they found no cancer, they also found no sperm. They diagnosed me with Sertoli-Cell Only Syndrome, Non-Obstructive Azoospermia with an unknown cause.

Following that procedure, my wife and I discussed getting a second opinion at VCU Health. Our initial consultation was with Dr. Smith-Harrison in January 2021. He felt that he might still find sperm by doing a procedure called Microsurgical Testicular Sperm Extraction (micro-TESE). Following that consultation, I was placed on chemo. The goal of chemo was to control hormones my body was overproducing, specifically Estradiol. Chemo was single handily one of the worst experiences of my life. To this day, I deal with random bouts of hives, forgetfulness (chemo-brain), and chemo rash. March 30, 2021, I had the micro-TESE surgery, and once again, the results were negative. While heartbroken and frustrated, my wife and I vowed to press forward. Dr. Smith- Harrison referred us to VCU endocrinology. My first appointment with Dr. Madan was on April 20, 2021. The initial meeting again involved more blood work. The blood work was for thyroid, hemoglobin, and additional hormone testing. No abnormalities were noted. In May 2021, I was placed on testosterone replacement therapy. One definite is I will have to be frequently screened for testicular cancer for the rest of my life. The testicular cancer screening will occur twice a year. By all accounts, Sertoli Cell Only Syndrome is the precursor to testicular cancer. Having NOA is in 5% of males in the world. Having NOA along with Sertoli Cell Only Syndrome resides in 1% of males globally. Have Sertoli Cell Only Syndrome and NOA with an unknown etiology only occurs in 0.5% of all males globally.

At the end of May 2021, I received a small piece of information that was significant. My liver enzymes were shit. The results indicated borderline non-alcoholic fatty liver disease. As a curious person, I went back in my records to see if the result replicated or if it was just due to the chemo. Come to find out, the first poor liver enzyme test I received was in 2019! Unfortunately, I never heard a word about looking into it. In June of 2021, I participated in the 2021 National Firefighter Cancer Symposium when Dr. Angela Slitt began to present. A few minutes into her presentation, a slide detailed the relationship between liver enzymes and PFAS. At that moment, a light bulb clicked. I rushed to my computer and immediately sent a screenshot of the slide to VCU with my liver enzyme report attached. Both the doctors noted the significance of the findings and are actively researching.

I received two more vital pieces of information in June. First, Dr. Graham Peaslee notified us my 2018 gear tested positive for PFAS. My station wear did not. However, it did contain brominated flame retardants (banned since 2004) and Benzene, a known carcinogen. The combination of Brominated FR and Benzene mirrors the effects of PFAS on the human body. Unfortunately, for my testicles, they were given a high dose of toxic chemicals for 33% of the year, every year, for 14 years. Let that sink in. Now one more test to go…PFAS. This test will not confirm whether or not PFAS is in my blood; we already know it’s there. This test will indicate how much. On June 26, 2021 at 0530 in the morning I received the results. Keep in mind there are 9252 PFAS. I was tested on 6. I popped positive on 4. The highest were PFOS and PFHxS.

It is important to note; I have kept two pieces of information out. One question asked at EVMS, Urology of Virginia, VCU Urology, and VCU Endocrinology was whether or not I have been exposed to any toxic chemicals. The answer I provided was yes. This question alone started us down a rabbit hole my family never imagined. We began researching firefighter fertility, firefighter endocrine issues, and firefighter testicular cancer. That research led me to have conversations with Diane and Lt. Paul Cotter (who is mentioned in a NY Times article), Captain Sean Mitchell from Nantucket Fire (IAFF Resolution 28), IAFF President Ed Kelly, Dr. Graham Peaslee of Notre Dame, Lt. Neal Sinatro from West Hartford, Ct, Dr. Madan at Virginia Commonwealth University, and Dr. Smith- Harrison at Virginia Commonwealth University regarding firefighter fertility research. I have reached out to many others in hopes of finding answers and getting the word out. In a profession where we encounter many hazards, we should not worry about the consequences of donning our turnout gear and putting on our station uniforms laced with chemicals. The second piece of information is a report from Dupont scientists. Lewis (2005) stated, “Beginning in 1992, scientists began to publish papers addressing how PFOA causes testicular tumors and other harmful effects on the male reproductive tract. First, they found that PFOA increases blood levels of Estradiol in male rats” (P. 29). Scientists also found males who have been exposed to PFOA and PFAS having difficulty regulating testosterone. Consequently, my body has yet to regulate both of these hormones, verified with blood testing, Clomid, and chemo (Lewis, 2005).

As a society, we must sound the alarm. Our blind trust in chemical companies and the EPA has led to arguably one of the worst environmental catastrophes known to humankind. PFAS is in everything, everyone, and has polluted every one of our waterways. Only recently has this began to garner attention. In June 2021, articles have been released detailing PFAS is in newborns, every citizen of the US, sparkling water, fish, makeup, and our waterways. We must hold the companies that have polluted our country responsible. Or this story will become all too familiar. Folks, we need to be better. Go to the DOCTOR! Trust me; I was that guy who didn’t want to go. I thought it was all BS, and I was fine. I wasn’t okay. I don’t know who out there needs to read this. But trust me, there is no shame. Talk about it. Write about it. Just get it off your chest. You are not alone.

One Last thing, Our dream of having a family is still very much alive. We are actively navigating this next chapter and look forward to what the future has in store.

Husband, Author, Firefighter, Advocate Against PFAS