How I’m managing my diet and gaining weight following illness

Unintentional weight loss has long been a challenge for this writer

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by Anna Jeter |

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When I was in elementary school, my mom had two hopes for my growth trajectory. She wanted me to be able to fit into a size 6 shoe, and she hoped I would reach 5 feet tall. I’m happy to report I surpassed both goals once my growth spurt hit in high school. Still, my size and weight have been a complex aspect of my health journey.

Pulmonary hypertension (PH) patients are often familiar with the struggle to gain weight and maintain it. Living with a heart and lungs that have to work overtime is a challenge. It often results in a situation where the body is burning more calories than it can consume.

I was very small throughout my childhood, with my growth always lagging behind that of my peers. But that was the expectation, given my PH diagnosis.

It wasn’t until I was listed for a heart-lung transplant that I became more focused on my diet. In those years, I made an effort to put on as much weight as possible to prepare for the procedure. Looking back, I’m not sure this effort was terribly successful. But it’s probably the phase of my life when I weighed the most.

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The value of learning how to live in the moment with PH

Following the transplant, I was reliant on a feeding tube for over a year, and I faced similar challenges where I was expending more energy than I was able to consume. These challenges continue for me today, as my respiratory status remains complex. With some bouts of declining health in the past year or two, I’ve been reminded that weight loss for me can be rapid, and recovery can feel impossible.

Specifically, several hospitalizations last winter took a hefty toll. In February, as I fought respiratory syncytial virus, my weight dropped to a record low in the history of my adulthood. Now, months later, I’m still in the process of regaining the weight and muscle that I lost.

A new approach to eating

Through this journey, I’ve become much more focused on my specific eating habits. In doing so, I’ve begun employing tactics that would’ve been useful all of those years that I lived with PH.

Most importantly, I optimize calories with “toppers” whenever possible. I top my coffee with cream, my eggs with cheese, my fruit with Nutella, and so on. This helps to enhance the caloric value of whatever I’m eating.

I’m also paying more attention to my preferences. The top advice most providers have given me over the years is “Ice cream! Just eat as much ice cream as you want.” This tip has led me to realize, hilariously, that I don’t particularly enjoy a plain bowl of ice cream. I will, however, scarf down an espresso milkshake at 2 p.m. on any day. This little difference goes a long way in encouraging me to reach regularly for a pint of Ben & Jerry’s.

I’ve also been told to eat small portions all day long, a common bit of advice. To do that, I always keep snacks nearby, and I make an effort to never go more than two hours without eating.

Finally, I’m forcing myself to detach a bit from the actual act of eating. This action is difficult to describe, and sometimes the act itself overwhelms me. Just now, as I stared at my dinner plate, my side of pasta appeared to be an obstacle I could never possibly get through. In cases like this one, I’m quick to use temperature, texture, and taste as an excuse to ditch the attempt altogether.

Lately, though, I’m asking myself to keep trying. “Just take two more bites,” I tell myself. And soon, in a pattern of simply returning to the plate little by little, the food disappears. Other distractions, such as going on my phone or watching a TV show while eating, help to remove me from the activity, allowing it to pass without my full attention.

I’ve gained only 4 pounds since winter, and I still have a ways to go until I’m back at my optimal weight. But this struggle is one I’m familiar with, and I won’t let this pace frustrate me. I know weight is critical to my long-term health, so I’ll always put as much effort toward it as I’m able.

Looking back on the past few months, I’m proud of the way I’ve been able to alter my mindset around eating. Even if the scale is slow to move, I know that the rhythms I’m creating for myself are helping me to make as much progress as possible for this body that I inhabit. And for those of us with chronic illness, even small victories are worth celebrating.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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