How ongoing surveillance helps my healthcare team help me

Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of that, I now have a CT scan of my lungs every year to look for changes from the previous year’s scan. At my latest appointment, the radiologist offered the following observations:

1. Status post-bilateral lung transplant: No acute infiltrate
2. Stable mild narrowing of the left mainstem bronchus at the anastomosis
3. Mild T10 compression fracture, new since prior.

When I reached the third comment, I couldn’t help but think, there it is, the new issue my care team will want to investigate.

After the first anniversary of my transplant, testing in the ensuing 18 months has been key to identifying new issues and developing a plan to address them before they become unmanageable.

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A journey of discovery

Before the start of my diagnostic journey, I had a single doctor, my primary care physician. As my journey continued, I added more specialists to my care team. After my transplant, I added even more specialists. Now, with the addition of an orthopedist, I have 12 people on my care team. It seems that each time a new issue is identified, a new specialist is added.

Another annual test that transplant patients have is the dual X-ray absorptiometry, or DEXA scan, which measures bone density. I had one about a year before my transplant to establish a baseline to later identify changes after surgery.

These measurements are typically taken along the spine and the hips, but mine included a scan of my arm, too. The first DEXA scan I had after my transplant indicated some minor changes in bone density. The most recent one, which I had last fall, also showed only minor changes.

A DEXA scan is normally covered by Medicare every other year (or sooner if deemed medically necessary). According to a research article published in the journal Frontiers in Endocrinology, “Lung transplant patients have a higher risk of osteoporosis and pathologic fractures than kidney, liver, and heart transplant recipients.” The authors theorize that “this may be because lung transplant recipients [require] more intensive administration of high doses of immunosuppressants to improve patient survival.”

Don’t stop

Each year around the anniversary of my lung transplant, I undergo several tests and procedures as a part of my medical surveillance. They are time-consuming, some are uncomfortable, and some require anesthesia. More importantly, they are necessary.

A routine surveillance bronchoscopy recently found that I had a narrowing bronchial stem. Initial corrective steps utilizing multiple balloon dilations failed to keep the bronchial stem at an appropriate size, so doctors inserted a stent to train my stem to maintain a proper diameter. As I recently wrote, doctors removed the stent last December. Later this month, they will perform another bronchoscopy to determine whether the stent was effective in training my bronchial stem.

Next, a routine echocardiogram identified an ascending aortic aneurysm that had grown to 4.8 cm when it should measure 2-3 cm. Surgical intervention for men is recommended at 5.5 cm. While it hasn’t ruptured, it does require closer scrutiny. My cardiologist and surgeon now monitor my ascending aorta every six months.

My most recent CT scan revealed a mild T10 compression fracture. This was likely the result of the immunosuppressant medications I take every day. I also take calcium supplements as a part of my daily pill regimen to help strengthen my bones.

I will continue to diligently complete these medical tests and procedures as required. The results allow my care team to identify issues earlier and initiate corrective measures more quickly.

It is important for each of us on this journey to complete these tests and procedures when our care teams write the orders. Whether you are recently diagnosed, awaiting transplant, or post-transplant, the more opportunities your care team has to address ongoing issues, the better chance you have to make every breath count.

Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.