An Unexpected CF Diagnosis

My son’s cystic fibrosis diagnosis turned our world upside down, but the real shock came when I learned I also have CF.

July 18, 2024 | 5 min read
A headshot of Peter-Kefa Huggins
Peter-Kefa Huggins, EMT-P
Peter-Kefa Huggins and his son Gabriel doing nebulizer treatments together

My wife and kids were stationed with me at Ft. Leonard Wood in Missouri when we got the news. In recent years, we had faced overseas deployments, two out-of-state moves, two military contracts in the U.S. Army, as well as the constant monitoring of world news for fear of daddy going to war. At this point, you would think we had everything together and had prepared for the worst, but hearing the words, "Your son, Gabriel, has cystic fibrosis" was something none of us could have prepared for. I remember looking into the tear-filled eyes of my wife as she said, "We just had two miscarriages back-to-back before him, why must our rainbow baby have a disease?" Our world was upside down.

By the grace of God and our extremely supportive cystic fibrosis team, we managed to muscle through the first year of Gabriel's life. By the second year, we had gotten more accustomed to the lifestyle and culture of CF. We started a team group and went to every local chapter event to support Gabriel and those just like him. Three months after his second birthday, the drug, Trikafta®, became available for him to take, and he has been doing very well on it ever since then. Life was starting to seem normal again. 

I finally got to start fulfilling some of my dreams — I was on my way to becoming a flight paramedic for the U.S. Army. I always wanted to do this before joining the Army and never dreamed of this opportunity happening during my military service. Unfortunately, this meant we would have to move again and say goodbye to our beloved CF team in Missouri. 

After arriving in San Antonio, our new CF team asked if Gabriel was the only one tested for cystic fibrosis in our family. No one else had symptoms within the household, and my other two boys had negative newborn screenings, so we never thought to have sweat testing done. Our team assured us that newborn screening cannot screen for every type of CF gene mutation, and the sweat test is the gold standard — they only wanted to ensure everyone was covered. That same day, my whole family and I got sweat tested for CF. I remember the smiles we shared while looking at each other’s arms and the dials on them collecting sweat. I went straight to class after the test was over.

Then, hours later, I got a phone call. I was informed, "Your boys are negative for CF —their sweat levels were normal and showed no signs and symptoms of CF". Then I heard a long pause ... "You, however, have a sweat level that exceeds the diagnosing threshold for CF, and we would like to run more tests." It was later that week I found out that I had pancreatic insufficiency, vitamin D insufficiency, and an FEV1 that was skirting abnormal. I have cystic fibrosis. While I thought I was going to be fine, and figured my sons' routines were something I could work with, I found that my CF mutation does not qualify for currently available modulators, and I have a mutation that has yet to be identified in the CFTR2 registry. My only known mutation has been registered in less than 50 people. Needless to say, I was overwhelmed.

In light of this new diagnosis, the more difficult news came: I was not fit for flight medicine or military service.
 

It was my dream to serve as a combat flight paramedic and complete 20 years of military service to serve my country, but that would not be possible as it would put me at too much of a health risk. Not long after, I medically retired from the U.S. Army and moved back to Missouri.

I spoke with my new CF team in Missouri and asked if it was wise of me to stay working as a paramedic since Emergency Medical Services is all I've worked in for the last 10 years. My team informed me there are inherent risks that are involved, but as long as I take care to mitigate any unnecessary risks, stay up to date on my medications, treatments, and vaccines, and keep my team informed of any issues I encounter, then I should be good to work in my field of occupation. With that confidence in my CF team, I decided to work in my hometown as a paramedic, and I've never felt better. 

Receiving my diagnosis of cystic fibrosis at 28 years old was unforeseen, but since then, I've learned to take life one day at a time, enjoy that time, and live out that time serving others.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Diagnosis
A headshot of Peter-Kefa Huggins

Peter is a retired U.S. Army soldier who was diagnosed with CF during military service, just over two years after his son, Gabriel, was diagnosed with CF. With 10 years of experience in emergency medical services in various locations and capacities, he now serves as a paramedic in his hometown. Peter's hobbies include playing bass guitar in worship groups, fishing with his sons, and belting out the driest dad jokes. You can find Peter, his wife, Clarissa, Gabriel, and their three other sons at Gateway Chapter events supporting their group, Gabriel's Warrior Angels, in Missouri.

Recent Community Posts
Raising Awareness as a Teacher With CF
Blog | 4 min read
Learning to Love Myself After Years of Bullying
Blog | 3 min read
Thirty Going on Transplant
Blog | 6 min read