Why I track changes to my post-transplant medications

After my mid-May clinic visit, I made my 130th medication change since my bilateral lung transplant in July 2021. Each week I fill my pill boxes with 17 medications. Another 17 have come out of rotation since my transplant.

Following my diagnosis of idiopathic pulmonary fibrosis in January 2017, my medication requirements were nothing compared with my post-transplant life. I was taking Esbriet (pirfenidone), a blood pressure medicine, and prednisone. Life, from a medication perspective, was much simpler then, but with each passing day, breathing became more difficult.

Since my transplant, I’ve stopped taking 17 medications for one of two reasons: They’d either served their purpose and were no longer a necessary part of my treatment plan, or they were replaced to accommodate my changing needs. Some of those medications were intended to prevent infections immediately after transplant. There was also a blood thinner to prevent clots, Lasix (furosemide) to reduce edema, and Lopressor (metoprolol tartrate) to manage my heart rate.

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Of the medications I take today, the four anti-rejection ones have accounted for more than 40 of the 130 medication adjustments.

My Prograf (tacrolimus) dose has been adjusted 25 times. I currently take 0.5 mg in the morning and 0.5 mg in the evening four days a week. Prograf has contributed to my diagnosis of chronic kidney disease stage 3b. During the first year following my transplant, the dosage was steadily decreased with only minor excursions back to higher doses.

My care team added Rapamune (sirolimus) in December 2022. The amounts of Prograf and Rapamune in my blood can be detected with a simple lab test. Taking 0.5 mg of Rapamune every morning allowed me to reduce my Prograf dosage.

Since my transplant, my prednisone dose has changed nine times. On two occasions it was dramatically increased: once when I had pneumonia, and once when I had COVID-19. Each time I had to titrate back to my “normal” dose. I now take a single 5 mg tablet daily and will likely continue to do so for the rest of my life.

CellCept (mycophenolate mofetil) has been changed the fewest times of my four anti-rejection medications. Only recently did my care team reduce my dosage from 1,000 mg to 500 mg two times daily.

Post-transplant medications may look different for everyone

Medication adjustments are a way of life for post-transplant patients. There’s no universal solution, especially with these anti-rejection drugs. Factors such as your age, your metabolism, and how your body processes the medication help your care team determine the proper dosage for you.

Comparing your medication list and dosages with someone else can be a frustrating experience. It’s certainly OK to discuss which medications you take, and why. It’s also OK to share what you learn with your care team. I try to understand each medication I take, what it’s intended to do, and how long I should expect to need it, in addition to researching possible side effects.

I track these medication changes to be able to answer questions if I have to visit a doctor outside of my care team. When I recently added an endocrinologist to my team, we discussed all of my medications, as well as how and when I take them. It helps them to follow my care plan and is how I 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.