In this awareness month, a look inside a largely invisible disease

I’ve always been open about having cystic fibrosis (CF). Though I don’t include this information when introducing myself, it comes to light soon enough. That’s largely a choice, because it’s often an invisible disease, with many of us appearing physically healthy despite having it.

While much of this condition can’t be seen, however, the most prominent symptom of CF can surely be heard: a telltale cough.

Before my double-lung transplant, my deep and productive CF cough would attract many uneasy looks. Random strangers would move away from me. But for co-workers or other peers who’d hear this cough more often, I chose to nip it in the bud and share my diagnosis.

Since my transplant, I no longer have that severe cough. Now, I typically share my diagnosis when someone asks me what I do for work. I then explain that I had a career in nursing, but since my transplant, I’m no longer working because of medical issues, including fatigue.

That’s just one of the invisible symptoms people with CF handle.

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Our body, our disease

Even close friends who’ve seen me go through years of respiratory exacerbations, hospitalizations, procedures, and my transplant don’t know the extent of what I deal with daily, when my complications are causing havoc internally.

I have pain every day. The clamshell scar from my transplant goes across my chest from armpit to armpit. The tip of my sternum was surgically removed and then put back on, bound with a titanium wire to hold it in place. The central venous access line in my neck resulted in a massive occlusive and nonocclusive clot in the jugular vein, which extends down past my shoulder.

Further, the anti-rejection medication I take leaves my body significantly immunocompromised, vulnerable to infection and even cancer. And still, my body could reject the new organ at any time.

In addition to the transplant, I’ve had six abdominal surgeries over the years. Scar tissue has grown beneath the surface scar, creating a connective-tissue nightmare, as mine lack the flexibility and elasticity of normal, healthy tissue. My tissues are tight, causing stiffness and discomfort and sometimes affecting my range of motion. One of my surgeries was to ease an intestinal obstruction, caused by growing scar tissue that strangled my intestines.

And then there’s CF-related diabetes, an entirely different disease caused by the defective and damaged pancreas. Diabetes can damage blood vessels, nerves, kidneys, eyes, and the cardiovascular system. People with CF tend to have pancreatic insufficiency from birth, which makes it difficult to absorb the fat and fat-soluble vitamins the body needs to function at its best.

Malabsorption, in fact, causes intestinal issues. Distal intestinal obstruction syndrome is also associated with CF, resulting in constipation and intestinal blockages.

People with CF also have an increased risk of developing deficits in bone density, such as osteoporosis and osteopenia. Malabsorption, chronic inflammation, and certain medications (including steroids) are just some of the factors here.

The medications used to treat CF can cause even more health issues, such as hearing loss, balance deficits, and — well, the list goes on and on. It’s a never-ending ripple effect. Sinus, liver, and reproductive issues also arise from this disease.

May is Mental Health Awareness Month, which is pertinent here because people with CF also tend to struggle with anxiety and depression.

Managing appointments, medications, procedures, testing, hospitalizations, surgeries, insurance issues, and medical bills is more than a full-time job. It’s a huge undertaking to find time to do treatments, rest, eat, and enjoy life beyond all of these complications.

Yet most people with CF push forward; they don’t complain, and they do their best to make the most of each day. Every year they’re alive is a blessing and a celebration. It’s something to remember this month — which is also CF Awareness Month.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.