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Shaylene Perry Shares Her Lung Transplant Journey

Maboneng Heart & Lung Institute
Feb 7, 2018
5 min read

“I had just qualified as a Chartered Accountant 2 weeks before I was admitted for my first operation. I felt like instead of my life and career starting, it was already over.” Beneath the chest cavity in the human body lives a two-winged butterfly. The wings of the lungs flutter non-stop; constituting one part of the process of respiration which provides our bodies with a continuous supply of oxygen; the fuel of life that keeps us all alive.

It was at the tender age of 25 years that Shaylene Perry’s wings were diagnosed with Lymphangioleiomyomatosis (LAM). A rare and progressive systemic disease, characterised by cystic lung destruction and one that predominantly affects woman. At the time of her diagnosis, Shaylene believed that it was her low fitness levels that were causing her to weigh her wings down and breathe heavily when climbing stairs and walking long distances. “After contracting what I thought was a slight bug, I saw my GP who immediately sent me to hospital after listening to my chest,” explains Shaylene, “my lungs had collapsed”.

Shaylene endured several surgeries to drain her chest cavity and eventually had to have Pleurodesis - a procedure to remove the tiny space between the lungs and the chest cavity in order to prevent recurrent pneumothorax: the presence of air or gas in the cavity between the lungs and the chest wall, which causes a collapse of the lungs (MayoClinic.org, 2017). “I was treated and tested for everything from an infection, to Tuberculosis (TB) and even cancer,” says the mother of one, “initially, the doctors could not diagnose what was causing my lung to collapse”.

Shaylene’s lung functionality remained incredibly stable for eight years following on from her diagnosis. In 2013, her and her husband, Ryan, welcomed a little girl into their world after a very difficult pregnancy. They named her Taylor, and it was only after her first birthday that Shaylene noticed a drastic decline in her lung functionality. “My LAM started progressing rapidly,” shares Shaylene, “within a few short months, I was on oxygen 24 hours a day”.

The state and rate of Shaylene’s lung function decline meant that she was no longer able to work and could barely brush her hair or teeth without having to take breaks in between. “I was told, ‘the only way I would be able to live would be to get listed for a lung transplant’”. The news arrived as a shock to Shaylene and her family. The first thought that popped into her mind was that she would never get to see her daughter grow up - “I felt so guilty for what I was about to put my husband and family through,” says a humbled and deeply grateful transplant warrior.

“To hear that news is life-changing. You really do go through the five stages of grief,” explains Shaylene, “it was extremely difficult; besides putting the entire family on a roller-coaster of emotions, my husband had to physically take over everything in our life. He works full-time and would return home to look after both myself and our daughter…

“I am beyond lucky to have him in my life… he has been with me every step of the way in this journey and has countless times had to be my live-in nurse as well,” says Shaylene of her high school sweet-heart.

It was exactly one year after her diagnosis that Shaylene was admitted for her transplant work-up. “I saw my doctor the day I received my call,” recalls Shaylene, “my lung function had dropped to 17%. With the rate of my decline, I would not have lived past a few more weeks from then.” The fragility of life whispered through every word she speaks. “The year I was told I had to have a transplant, my father’s cancer returned,” the poignant reality adding immense value to the life Shaylene fought for, “he lived to see me get my lung transplant and passed away just over six months later. He told everyone that he could pass peacefully as his main worry was whether I would get the life-saving organ transplant that I needed to live.”

The life-saving transplant was a huge success, and the Perry’s welcomed Shaylene home after only two-and-a-half weeks of recovery in hospital. Shaylene now takes a range of anti-rejection medicines, antibiotics and anti-bacterial tablets daily, and which she will continue to take for the rest of her life.

Shaylene’s donor and their special family own a permanent rent-free spot in not only her mind and heart, but in the minds and hearts of her family as well. “My donor and their family have become one of the most special and important aspects of our lives,” says Shaylene, “I think of my donor everyday; every time I get to do something, even just to be able to walk to the end of my driveway to watch Taylor ride her bike.” The gratitude Shaylene expresses towards her donor and family, for simply saying yes to organ donation is perhaps a gratitude only an organ receiver would be able to comprehend.

“My favourite memory is that of my daughter,” says a smiling Shaylene, “once I was well enough, I picked her up. She looked at me very confused and asked ‘what are you doing?’” Shaylene laughs, “I replied that I was picking her up for a cuddle, and she replied saying, ‘but Mommy’s don’t pick children up’, as I had never been able to do such a simple thing”. Moments of connection that most healthy families take for granted on a daily basis.

As the old saying goes, every grey cloud has a silver-lining, and in 2016 Shaylene together with fellow organ transplant survivors and receivers, Alice Vogt, Fawn Rogers and Siobhan Scallan, founded Love Life; Gift Life (LLGL), established in an effort to give back and to address the critical shortage of organ donors in the country by transforming organ donation in South Africa.

Besides working with LLGL, Shaylene is enjoying every moment of being home with her daughter, Taylor. “I missed out on so much when I was sick that I am loving just being able to do the simple, small things with her,” explains Shaylene with a deep awareness and gratitude for the life she lives.

“I would not be here today [my donor and their family]. My daughter would have lost her mother and my husband, his wife. I have no words to express how much I want to thank them for the incredible gift they gave me that day, they gave me life.” “Don't give up,” is the advice Shaylene wishes to share with all those people waiting for a transplant; holding onto their lives, “the whole process is so hard and people dont understand how you can be so sick, but don’t focus on that. To all those waiting: stay strong and keep fighting!”

Love Life; Gift Life's key message to the public is to encourage individuals to talk to their families about organ and tissue donation and to communicate their wishes to their next-of-kin. The majority of the public are not aware that their family members are the ones who ultimately have the final say and organs cannot be donated without the consent of their family. Disclaimer: A special thank you to Shaylene Perry for contributing to helping us raise awareness of organ donation and transplantation. Shaylene did not receive her lung transplant with the Maboneng Heart and Lung Institute.