My journey with PF and transplant means lifelong medical surveillance
Early identification and management of health issues is vital
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Note: This column describes the author’s own experiences with Protonix (pantoprazole), Prograf (tacrolimus), Rapamune (sirolimus), and Forteo (teriparatide injection). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Pulmonary fibrosis patients, no matter where they are in their journey, require lifelong medical surveillance. Early detection of health issues is critical, as addressing problems promptly increases the likelihood of successful outcomes, even if ongoing monitoring sometimes feels overwhelming.
When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, the sheer number of required appointments felt overwhelming. Beyond the initial diagnosis, uncovering additional comorbidities became essential to my care. Pinpointing these conditions helps tailor treatment plans for better outcomes.
During the pre-transplant phase of my journey, two issues emerged. First, my care team suspected sleep apnea and ordered an overnight sleep study, which confirmed the diagnosis. I began using my first piece of durable medical equipment, a continuous positive airway pressure (CPAP) machine. Eventually, when supplemental oxygen was prescribed, it was integrated into my CPAP each night.
I was also diagnosed with gastroesophageal reflux disease, a condition I was unaware of until my care team received the results of an endoscopy. Since then, I’ve been taking Protonix (pantoprazole) as part of my treatment plan.
Post-transplant complications
I was fortunate to receive a bilateral lung transplant in July 2021, allowing me to continue my journey. Medical surveillance continues, and it is not surprising that new issues are still being identified and addressed by my care team.
This is a classic example of irony: Many issues identified after my transplant are actually side effects of the very treatments that keep me alive. Solid organ transplant recipients must take a range of medications to reduce the risk of organ rejection. However, the side effects of immunosuppressive drugs make ongoing, lifelong medical surveillance essential.
Two examples of complications from my post-transplant journey are chronic kidney disease (CKD) and osteopenia, or bone density loss. My CKD is currently classified as stage 3b, indicating moderate to severe loss of kidney function. This developed as a result of my immunosuppression medications. My transplant and nephrology teams have coordinated adjustments to my medications, reducing my Prograf (tacrolimus) dosage and supplementing it with Rapamune (sirolimus).
The combination of medications I take daily has led to a diagnosis of osteopenia, which is managed by my transplant care team and endocrinologist. My treatment plan now includes Forteo (teriparatide injection), designed to improve and potentially reverse bone density loss.
As I write this column, I am adding a new diagnosis: diabetes, based on my recent A1C test. Diabetes is a common issue among transplant patients; according to Ramsey Hachem, MD, 35% to 40% of post-lung transplant patients develop diabetes within five years. My team is now working on preauthorization for a glucagon-like peptide-1 (GLP-1) medication, such as Ozempic (semaglutide), to manage my diabetes.
One of the greatest benefits of ongoing medical surveillance is the early identification and management of health issues. Having received the gift of life from my donor, I am committed to honoring their legacy for as many years as possible. This dedication lets me watch my granddaughters — Abigail, Charlotte, and Brooklyn — grow into their unique, vibrant personalities. Embracing the journey, including medical surveillance, has allowed me to truly 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.
Penicaut
Great story Sam! The transplant and follow up sound exacting but your spirit shows that it’s worth it. What about the pirfenidone and the other current treatment?
Samuel Kirton
Penicaut,
Thanks for reading my column. The post transplant medications, including pirfenidone, are working as they are supposed to work. I would do it all again.
Sam...
Janet Soo
Best wishes. Stay positive and be happy always.
Wayne Mattalo
As I near the decision for a bilateral transplant, what you described is paramount. I describe as a no-brainer do I want to do it. If you don't the disease will take your life. If you do the apprehension of daily care and possible failure would be nerve racking. At the end of the day the decision is do you want to live or die...Not much of a decision
Samuel Kirton
Wayne,
Thanks for your comment. I can tell you that the joys of life I have experienced since I was transplanted are amazing. I am also building the legacy of my donor. I would do it all again.
Sam...
Rebecca Lilly
My husband was diagnosed with IPF in 2014 in which he began a long journey with Esbriet until 2023 when the plateau he was on, ended. In July of 2024, he too received a bilateral lung transplant. This blessing he received has not gone without many bumps in the road. He has had 2 issues with kidney failure due to the immune suppressants you have mentioned in order to survive. There are times he gets depressed because he feels he is feeling so good and then something such as a kidney issue arises and he feels it is 2 steps back. Here is the deal. He got to see our son married and attend the wedding and also the birth of our first grandchild. We are both very grateful for what the donor provided him; a second chance of life that the donor was not allowed. Whenever my husband says something negative, he now tries immediately say a positive.
If my husband would not have gotten the transplant almost 2 years ago, he would not be here today. I thank God for amazing blessing given.
dominic muia
Did Prograf have an effect on causing lung disease ? By reducing it, was it betterfor your disease ?