My Experience Leading Up to Transplant

As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.

April 2, 2024 | 5 min read
A headshot of Ashley Main
Ashley Main
Ashley smiling and pointing to her purple t-shirt, which features a white graphic of lungs

If you think that being a university student is tough, it’s twice as difficult when you have a chronic illness like cystic fibrosis and are dealing with end-stage lung disease as a result. It took me five years to finish my music degree, as dealing with CF is also a full-time job, and I had difficulty managing the load. 

I was a music major, playing the flute in several different musical groups and singing in choir. My stubbornness knew no bounds, and I was determined for my last year of university that I would finish my degree and prove a point to those in my life and to myself. I was running steadily at 24% lung function, and like I said, playing and singing regularly. All CF patients learn to adapt to an ever-changing lung function, and when playing an instrument, you learn to adapt and breathe differently to play/sing. I am a firm believer that sticking with music as long as I did prolonged my need for transplant. 

So, I had many challenges that last year of university. The phrase lung transplant was brought up for the first time — right at the very beginning of the school year. I went into my pre-assessment for transplant in February 2016 to see if I would be a good candidate before the transplant team would decide to do a full assessment prior to placing me on the waitlist. 

During the final semester that year, the lung bleeds started — capillaries popping left, right, and center — the first happening after a music history exam. My lungs were feeling particularly tight that evening and I had asked my boyfriend (now husband) to go for a walk with me to try and loosen the mucus with the hope I would cough it out. In the process of coughing, a capillary burst. I was met with a gush of warmth in my lungs and gurgling. I truly thought that I was going to die. Luckily, that was not the case, and I was living on the edge quite consistently after that. 

I was scared to play my instrument in fear that I would burst something again, which I ultimately did a few more times. Following a succession of lung bleeds, I woke up in the middle of the night due to a sharp pain when inhaling. After a call to 911 and an ambulance ride with my roommates following behind us, the doctors stated that I had a partial lung collapse in the upper lobe of my right lung, which was a problem area for me for as long as I could remember. My reaction was “Well that’s inconvenient,” to which I heard my roommates on the other side of the current whisper obscenities in amazement. 

As a precaution, the hospital kept me overnight and did a contrast dye CT scan to see if there were any clots. Sure enough, within the partial lung collapse, they found a pulmonary embolism, a blood clot. While I spent those two days in the ER, I missed a mid-term exam, which I had been studying for. Ultimately, I was put on blood thinners, was told that they expected the cause of the blood clot was my birth control (apparently CF and end-stage lung disease played no part…), and sent me back on my merry way to continue school. I was in a different city from my CF clinic and I was overwhelming to this team. 

I was determined to make it to the end of my last year and graduate — which I did. I received my diploma, but I did not go to graduation. At the time, I did not want to walk on the stage as sick as I was feeling, and — by the time graduation came around — I was on oxygen. I did not want to be looked at with pity as I walked — or maybe was wheeled — across the stage. To this day, I do not regret my decision.
 

I finished university in April, graduated in June when I was put on oxygen full time, and, by July, I was doing my week-long series of tests for transplant assessment. Two months later, in September 2016 after only being on the transplant list for 12 days, I had my double-lung transplant. My stubbornness paid off, and I did the one thing I needed to do, which was to prove a point. CF did not stop me.

Almost 7 ½ years post-transplant, I am working full time, married to the man that was with me through this whole journey, and living life in the most “normal” way as anyone else. I’m now in the process of writing my first book about my lung transplant journey. Stay tuned! I have also shared my full story on TikTok during the COVID-19 lockdowns. 

Breathe easy.

Ashley

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
College | Lung Transplantation
A headshot of Ashley Main

Ashley was diagnosed with cystic fibrosis at two weeks old. Hospitalized from lung infections almost once a year from age 10 to 24, she received the gift of new lungs in September 2016. Ashley was actively involved in some sort of sport every year to maintain her health, mostly swimming and softball. What kept her the healthiest and postponed lung transplant was her love for playing music, the flute specifically, which Ashely started at age 12. Ashley continued this pursuit at university, where she majored in music. Unfortunately, COVID-19 and life have gotten in the way, but she hopes to pick the flute back up in the near future. You can find Ashley in Ontario, Canada with her husband, cuddling her dog, knitting, and making her colleagues laugh — or roll their eyes a little too hard. Ashley is writing a memoir about her transplant experience, set to be published at the end of 2024.

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