MY STORY

When Sandi Parsons received an organ transplant, the donated lungs saved her life. Finding the words to say thank you to the donor’s family was hard enough – but making that longed-for connection proved more difficult still.

After an organ transplant saved her life, how could Sandi Parsons ever properly thank her donor’s family for her gift?

Amid the purgatory that is the transplant wait-list, donated lungs were an abstract concept to me. I poured all my energy into ensuring that each breath was still followed by another. I was determined to cling to life long enough for a family to say ‘yes’ to organ donation. My future was solely dependent on the incredible generosity of a stranger, and a decision they would make in the midst of great personal loss and grief.

Breathing is an all-consuming task with lungs in respiratory failure. Despite oxygen whirling up my nose like a hurricane, every single breath remained a struggle. The oxygen I did manage to suck into my lungs never seemed quite enough, leaving me in a perpetual state of breathlessness.

Still, I clung to life by my very fingernails – too stubborn to let go, never willing to concede defeat. As someone who lived with cystic fibrosis (a genetic condition that damages the lungs and digestive system), I knew it was a fierce adversary. Even though my body was rapidly losing the war, I never lost belief that donated lungs would arrive in time and allow me to cheat my way past fate.

Post-transplant, my donated lungs are no longer just an abstract concept. These amazing lungs breathe naturally and without effort – and I am acutely aware that they were once a part of another. They came from somebody who lived and was loved, who laughed and cried. Someone who mattered.

These wonderful lungs connect me to someone I will never have the chance to know. They deserve much more than just the token label of ‘my donor’. A transplant is a gift between strangers, yet it’s also deeply personal. These lungs were a gift from a person who saved my life – a person who is the hero of my story. Yet, according to Australian law, I’m not entitled to know their name. Health professionals are required to keep information

regarding organ donors and transplant recipients confidential. The donated lungs keeping me alive came from my home state, Western Australia. This single non-identifying piece of information was the only detail my healthcare team was allowed to share with me.

Rehabilitation consumed the first few months after my transplant, along with an adjustment to the toxic cocktail of medications I now require to keep my body from rejecting these precious lungs. As the six-month mark loomed, I needed to write a letter of thanks. Writing has always been a real source of pride for me, but the words for this letter did not come easily. It was certainly not my best work.

Writing into the great unknown, I knew nothing about the family that would receive this letter. From the moment I woke up post-surgery, I had a deep conviction that these lungs were gifted to me from an older woman who was also a mother. But I had absolutely no evidence or knowledge to back up my gut feeling, and my short stature meant it was possible my donor could have been a younger person, so I structured my letter to be generic.

Besides the overwhelming need to tell this family that they had made a difference, that their decision saved my life, I had little else to say. At six months I hadn’t yet returned to work or performed any marvellous athletic feats. The only words I had to paint a picture of the difference they had made were clinical – a list of symptoms and statistics that had been my norm. And of course, there was the enormous difficulty of how to say ‘thank you’.

As a courtesy and to mark our good manners, we’ll sometimes say ‘thank you’ in passing – often without feeling – for things that can be trivial. These same insignificant words were all I had to express the enormous well of gratitude I felt – not only to this one unnamed person who was now a part of me, but also to their family. They made a huge decision that ultimately saved my life. I was very aware that the circumstance causing me to celebrate was also the source of their grief.

I signed off my first letter with, “Thank you for the opportunity to have a future. Sandi”. I knew there was a chance that my name would be sanitised, but I still felt that giving my name was like leaving a door open to the possibility of saying thank you in person. If my name made it through DonateLife’s scrutiny, a Google search of Sandi and cystic fibrosis would lead to my author website. Just in case my name had been sanitised, I used that same phrase in numerous places on the internet, including social media – leaving a trail of breadcrumbs that would lead back to me.

A year after I sent my letter off via my transplant coordinator, I found the Donor and Recipients Group Australia on Facebook. Joining that group completely changed my understanding of the transplant process. Just as every transplant recipient has a unique story to tell, so too do donor families. But there are common threads that run throughout their stories. Many still wait to hear a simple ‘thank you’ from their recipients. Countless others take great comfort from the contact they receive via official channels.

The stories I read from donor family members prompted me to once again write to the family whose decision to say ‘yes’ to organ donation had given me a future. This time I sent a card with a simple message thanking them, and a note saying their family was never far from my thoughts. Once again, I signed it with my first name.

But my little card had quite a long way to travel before it would reach my donor’s family. From my clinical nurse consultant, it would be passed to DonateLife. Then, after they’d screened my correspondence, DonateLife would make contact with the family and ask if they wished to receive it. If they said yes, the postie would be responsible for ensuring it arrived at my donor’s family’s home – a big journey for a card, and full of opportunities for things to go awry.

The Donor and Recipients Group Australia highlights many problems with these correspondence guidelines. Representatives from both sides of the transplant journey express great dissatisfaction with the non-identifying information process. In contrast, this Facebook group allows donor family members to share not only the stories of their loved ones, but their names as well. The importance of a name should never be underestimated.

For me, the term ‘my donor’ has always left a bureaucratic taste in my mouth. It’s an anonymous term that implies that organ donation is a simple, everyday transaction. The posts I read renewed my desire to have a name for the person who had saved my life.

I tackled the task with vigour. WA has an organ donation honour board which lists organ donors’ names, and I could eliminate some names using the online death notices. I ruled out other names when donor families posted their loved one’s dates in the Donor and Recipients Group Australia and they did not match my timeline.

Eventually, using a process of elimination, I narrowed down the possibilities to just one person. But without confirmation from her family, I could never be sure that my detective skills had been correct. Nonetheless, this person resonated strongly, and I felt sure that I had found my donor.

Being able to give the woman who saved my life a name was therapeutic for me. I could now acknowledge the woman who, with the great gift of her lungs, had given me a second chance at life – enabling me to reach my full potential. As if these lungs, our lungs, represent the final piece of the jigsaw that is me, acknowledging her by name helped me put that piece into place.

“I was aware that the circumstance causing me to celebrate was also the source of their grief.”

Despite my certainty that I had uncovered the identity of my donor, I did not believe that I had any right to waltz up to her family and introduce myself. I had no idea if contact would be something they would welcome. My contact with other donor families made me aware that some families are never able to write or feel any desire to meet recipients, and I respect that the decision is their right to make.

While I was content with the knowledge of who my donor was, I felt that the complex journey taken by my correspondence left a lot to be desired. My clinical nurse consultant told me that – in her experience – while most recipients write, it was rare for a donor family to write back. In contrast, the Donor and Recipients Group Australia was full of posts from donor family members wishing to hear from their recipients, many reporting that even though they had written, they had received no correspondence in return.

The idea that my humble ‘thank you’ may not have actually reached its destination worried me, so I continued sending correspondence via the official channels. At five years I sent another letter, followed by more cards. Based on the law of averages, I figured that at least one of my letters or cards must have reached their intended recipient.

Two months after I had sent my most recent card, and over seven years after my transplant, a simple message arrived via Facebook Messenger. It was followed by a phone call where I had the chance to say ‘thank you’, and also received confirmation of the name of the woman who is the true hero of my story. Now I know not only her name, but a little bit about her story as well.

I’ve always felt blessed to be the guardian of these incredible lungs – and since that conversation, I feel even more so. I’ll never know the generous and kind woman, but I know of her, and that is enough.