I’m struggling to lose weight for a lung transplant, but I won’t give up

Weight loss is a recurring topic during my medical appointments, and I frequently discuss it with my transplant team. I wrote about this a couple years ago in a column titled “Using Ozempic in hopes of qualifying for a lung transplant.”

At appointments, my body mass index is frequently mentioned in relation to my overall health and eligibility for a double-lung transplant due to having pulmonary fibrosis and rheumatoid arthritis-associated interstitial lung disease (RA-ILD).

Despite my efforts, though, weight loss has never come easily for me. I’ve followed countless diets, exercised within my physical limits, and pursued medical interventions. Some strategies have given me brief hope, only for the weight to return or my progress to stall.

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Battling biology and stigma

For most of my life, I’ve lived with obesity, navigating both the personal and societal stigmas that come with it. As a child, I never fit into the socially accepted version of what “healthy” was supposed to look like, and now, as an adult fighting for my life, I feel the burden of that struggle even more.

I understand that losing weight is crucial for qualifying for a double-lung transplant. I feel trapped between the urgency of my situation and the reality of how difficult losing weight is for me. My transplant team and I have discussed weight-loss surgeries, but due to potential complications, they currently do not consider me a suitable candidate.

When my A1C levels (a measure of average blood glucose levels) were high, I was prescribed Ozempic (semaglutide injection), and I lost 30 pounds. I was also prescribed Contrave (naltrexone/bupropion), another weight-loss medication, but many medical insurance policies don’t cover weight-loss medications, making them extremely expensive.

All of this weighs heavily on my mind, and I’m at a loss about what to do next. I feel like I’ve hit a brick wall. In the meantime, my doctors have decided to give me infusions to better manage my condition in hopes of prolonging the transplant.

Previously, I received Orencia (abatacept) to treat my RA-ILD, which reduced my lung inflammation, but it hasn’t been working quickly and effectively enough. My doctors switched me to Rituxan (rituximab), a type of B-cell therapy. (Overactive B-cells are thought to play a role in joint damage and other symptoms of RA.)

The hardest part for me is feeling like my body is working against me. It’s not just about willpower or discipline, it’s about biology, medication side effects, and a lifetime of battling obesity. It’s also about the stigma, judgment, and sense of failure that accompanies every weigh-in I have.

I want to be healthier. I want to be eligible for transplant. I want to keep fighting. But the fear remains. What if my body doesn’t cooperate? What if I run out of time? What if all my efforts aren’t enough? These are the thoughts that haunt me during quiet moments.

Although it’s difficult, I’m committed to reaching a healthy weight to be eligible for a transplant. Yes, it’s frustrating, but my persistence is powerful. Each step forward, no matter how small, is still progress. This journey isn’t just about qualifying for a transplant, it’s also about giving myself the best chance at a longer, healthier life. I’ll just have to keep reminding myself that I’m stronger than this obstacle, even if it feels impossible.

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.