At 2:30 a.m. in October 2024, I received a call that changed my life.

Four weeks earlier, I was put on the waiting list to receive a double lung transplant. Then I was faced with the reality of actually being chosen to receive one. I didn’t feel ready. I almost said no because I was so scared. I had not prepared myself for the real possibility of getting new lungs.

Once I agreed, I called my family and a good friend who helped me pack a bag and took me to the hospital. I slept for a couple of hours as the doctor and nurses ensured the lungs were fully compatible with my body. I was woken up by my surgeon, who told me it was time. I didn’t remember anything until I woke up in the intensive care unit.

The whole experience still feels surreal. There’s so much I didn’t know or couldn’t have begun to predict from the most rewarding and debilitating experience of my life.

Steps to prepare

I am very passionate and interested in exercise and nutrition, which has helped my PAH journey significantly. In fact, I think that’s one reason I have been able to keep going for so long. My PAH specialist told me nourishing foods, reduced salt intake and movement are like extra “drugs” to help manage my symptoms, and I have always prioritized strength training and moving my body.

When my doctor and care team started my pre-evaluations for transplant, I started an eight-week course of pulmonary rehab. It was the best thing I ever did to help prepare my body and lungs for the surgery. Mentally, I can’t stress enough the importance of confiding in someone. I invested in therapy, and I had an excellent general practitioner who cared about me. I leaned on my family and friends for support.

I also invested in a coaching program and have my own coach who writes my strength training programs. The program is part of a community of women that focus on movement, nutrition and mindset, all of which helped me cope with and manage my PAH.

Hard truth of recovery

My recovery was brutal. The surgery, since you’re out for it, isn’t that bad. It’s afterward that the work continues and is initially harder. Because transplantation is such a massive surgery, your brain doesn’t know what is happening, so it takes time for your body to relearn how to do what used to be basic tasks.

The first couple of weeks in the ICU were some of the most challenging. I couldn’t fathom how much strength I lost. The first time I attempted to stand up from my chair, I had to be assisted by two physiotherapists and my nurse. A week and a half later, I walked for the first time, but it was a short walk, just down the hall, and I was so tired. It was so hard to cope with my debilitation mentally because I knew what my body was capable of before surgery, so feeling weak made me feel helpless.

The other part that was hard and shocking was the delirium. The thoughts, images and conversations your mind can come up with in the ICU can be intense. One day, I even told my nurse I didn’t want the lungs anymore and asked her to take them back. She told me I just needed to hang on for a few more weeks, and I would be home in my own bed living my life. A few weeks felt like ages away and some days it was hard to stay positive. I had to keep reminding myself, “This isn’t forever, one day at a time,” and what lifted me up the most was seeing my family and talking about familiar things.

Step by step

I am now 18 months post-transplant. The first three months were definitely the hardest. After my surgery, I was in the hospital for three and a half weeks, which was difficult because I was away from my home and had put my life on pause. But I started to bounce back with the support of my nurses, physiotherapists and occupational therapists. I then recovered at home with lots of follow-up visits to the hospital for bronchoscopies, tests that check the function of my lungs and airways, and rehab.

At around the eight-week mark, I was still finding daily tasks very challenging and worried that I wasn’t going to feel better, so I went back to therapy for support. I also found it challenging to eat, so I prioritized healing foods to assist my body, such as lots of protein, fresh fruits and vegetables, and water. Prioritizing sleep is also important. Take naps, sleep for 12 to 14 hours, and give your body the rest it needs to heal.

I feel like I finally turned a corner at the three-month mark, when I went back to work and was able to do my pulmonary rehab on my own at the gym. Having a routine and independence made me feel like myself again and was crucial in my recovery.

I probably could’ve held off going back to work a little longer, but I was getting stir-crazy at home and started working part-time. I had to learn my limits, adjust based on my energy level, and balance my hospital appointments with work and life while ensuring I was getting enough rest.

Overall, I think I finally felt like I was getting back to myself around the 12-month mark. I was told that it can take 18 to 24 months to feel fully recovered, which tracks for me. At 18 months, I feel better and better.

Common misconceptions

I think most people assume receiving a lung transplant means all of a sudden, you’re healed. People may think you will be able to take big, beautiful breaths, the heavens will open, the angels will sing and life will be good again, but it’s a process.

I felt worse before I felt better. It makes sense, though. My body and brain had been through enormous shock, and my brain had to unlearn the way I had been breathing for 21 years and relearn a new way.

Some people think that a lung transplant solves “everything,” but you are swapping one set of issues for another. For me, though, I see it as a chance to breathe and live my life again, and that makes any other challenges feel manageable. I’m no longer deteriorating, wondering how long I’ve got left to live. I believe a lung transplant should not be feared. It is another treatment option. While a drastic and intense option, it can be the next step for some people. Medical teams won’t recommend this option unless they believe it will benefit you.

Many people have asked me if transplantation is “worth it” for only a few more years of life. I ignore stats all the time. If I had paid attention to statistics when I was diagnosed with PAH, I would have died two years after diagnosis at 19. Instead, I have kicked on for 21 years.

With medical advances, lung transplant recipients are living longer, fulfilling lives. Survival does not only depend on medicine, but also on how you face the journey and care for your new lungs.

In the end, it was so worth it for me. I had never seen my oxygen saturation at 100%. Once I did, I realized that I could finally take the beautiful, big breaths I had dreamed about.

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