My health issues are more complex now than when I had CF lungs

I’ve always had to play detective when it comes to my health. Running through a list of checks and balances, I can typically determine what’s going on in my body. After living in it for 38 years, one could say I’m an ol’ pro at connecting symptoms with which part of my body needs attention.

That wasn’t the case last month, though, unfortunately. I was in the hospital for nearly three weeks, and it took two weeks to figure out what was going on. The doctors ran just about every test known to man, and still came up with more questions than answers.

Eight years after my double-lung transplant, I’m continuing to learn about my lungs and how they function differently from my cystic fibrosis (CF) lungs. What used to be straightforward is now a complex puzzle to solve. With CF lungs, I knew what was wrong and how it needed to be treated. Now, it’s not so clear-cut.

After nearly two weeks, I transferred from my home hospital to my transplant center’s hospital where my team could assess me. They were able to figure out what was causing my breathlessness and treat it appropriately. Thankfully, I have a team that understands me and how a transplant affects my body.

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After being discharged, I’ve continued intravenous antibiotics at home to treat a lung infection, and I’ve been processing everything that’s transpired this past month. It’s been a lot, to say the least.

Lara Govendo utilizes her port-a-cath to administer intravenous medication at home. (Courtesy of Lara Govendo)

I can’t fit everything here, but it’s worth discussing the residual impact this season has had on me. Not only have I been sick physically, but my mental, emotional, and spiritual health have taken a hit.

It’s scary when I don’t know what’s wrong with my body. Transplant life exhibits new challenges that I’ve never dealt with before, and wading through uncharted waters is terrifying. It’s completely different from what I was used to before my transplant.

On a mental and emotional level, it’s hard to see the light at the end of the tunnel when I’m sick. It feels like it will always be like this and I’ll never get better. That’s how trauma talks, though. Once I recognize this, I can remind myself that this is just a season.

Past medical trauma resurfaces when I’m sick. My body remembers nearly dying several times, so it can be difficult to differentiate the past from the present. Wondering, “Will my breath ever come back or is this my new normal?” is a real fear. I’ve had to work extra hard to retrain my brain to stay in the present. Remembering I have new lungs and that it’s not the same is a continuous process.

I know that doesn’t make sense to people who haven’t lived it. I’ve learned that other people’s opinions on how trauma affects me doesn’t determine if it’s real. I know it is. Reminding myself of this is key.

On a spiritual level, keeping hope alive when it feels impossible is more challenging this side of a transplant. Prior to having new lungs, I was used to being sick and held on to hope perpetually during seasons of severe illness. The here and now after the transplant has presented me with new ways to trust God in uncertain times. It’s a work in progress.

This season of being sick has reminded me that a transplant is not a cure for CF. However, I’m grateful that my breath did come back just as strong as it was before getting sick this time around.

I’m thankful I have new lungs, even if this transplant life is not without hurdles.

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