Acceptance and uncertainty
At 27, I was faced with the difficult decision to undergo a risky double-lung transplant, which may extend my life by anything from one-to-20 years or more, or do nothing and have a 50 per cent chance of dying within two years.
Although my chances looked better with a transplant, the outcome was still uncertain. But my health was diminishing so I reluctantly accepted that the course of my life was uncertain. I slowly accepted that I was too sick to work or take care of myself. As I lost the ability to concentrate and write, my life and career plans were put on hold. I was a radio journalist but when I got sick I became unable to project my voice and sometimes even talk due to the difficulties I had breathing. Acceptance and giving up, however, are not the same thing. I never gave up.
The time immediately after the transplant
I woke up with a tube down my throat, unable to talk, unable to move. The high doses of pain medication gave no relief. It was only a matter of time before I was offered an epidural. During the operation, my sternum had been cracked and my chest opened nearly 10cm in order to replace my lungs with healthy ones. But it wasn’t over yet.
A few days later I returned to surgery with a bleed near my heart. I was also given high doses of steroids and anti-rejection medication for the first time, which was a shock to my body. The new cocktail of drugs caused me to hallucinate, have wild mood swings and visceral nightmares that still seemed real 10 minutes after I had woken up. And on top of all that, someone had died to save my life, which made the mind games even harder to bear.
"Acceptance and giving up, however, are not the same thing. I never gave up."
You don't look sick; you're too young to need a lung transplant; you need to get more exercise; just think positive; there's a natural cure for everything have you looked on Google? These are just a handful of the comments I received on the days that I was brave enough to leave the house.
A few of my good friends had trouble understanding the reality of what was happening to me and it was difficult to explain my situation because not many people really understood what it was like to be so close to death.
It seems that society shies away from discussions of death and dying. As a result I developed anxiety, a fear of going out and avoided people who I knew would offer solutions that were laughable at best and medically reckless at worst.
In the lead up to my transplant, it was hard to imagine how good life could one day be. My energy was spent getting through day-to-day challenges, such as climbing the stairs to my apartment and the four hours I spent each day on nebulisers and breathing exercises, as I hung my hopes on some faint notion of things being better in the future. But when I got the call for the transplant and I came out the other side, it was better than I had ever imagined.
I went from constant breathlessness and exhaustion to being able to run within a few short months of the operation. I even ran the City2Surf with my dad. And the benefits didn’t end there. My appetite returned for the first time in years. If I needed something from the shops, I was free to go and get it. I could sing a whole bar and actually hold the notes without getting breathless. Believing in a better future, even if you can barely imagine it, was one of the things that got me through the worst of the bad days.
"But when I got the call for the transplant and I came out the other side, it was better than I had ever imagined..."
Connecting with my donor
When I got my new lungs, I imagined the person that donated them to me. I was deeply aware of their presence and wondered what had happened to them. But in Australia, the identity of both the organ recipient and the donor are kept private. Contact between the recipient and the donor’s family, however, can be facilitated through an intermediary. After my initial recovery, I decided to write a letter to my donor’s family to thank them for their kindness and generosity and for taking away my pain. I wanted them to know that their loss hadn’t been for nothing.
To my surprise I received a reply a few weeks later. My joy turned to grief as they opened up about the person they had lost. I was heartbroken. They said they were happy and so proud of me. It wasn’t until I read that bittersweet letter that the full magnitude of what had happened hit me. I suddenly found meaning in what had transpired and became very connected to my donor. It was the hardest letter I ever read but it was also the greatest. I think about my donor every day and it makes me more determined to live my best life.
If you wish to be an organ donor, discuss your wishes with your family. Organ donation is the ultimate act of loving kindness, and it brings tremendous comfort to the donor’s family to know that their loved one could offer a second chance at life to so many deserving people with families and loved ones of their own. Through organ donation you could transform the lives of up to 10 people.
Ellice is a writer and advocate for organ donation. She ran in the City2Surf on the first anniversary of her double-lung transplant raising money for the Australian Heart Lung Transplant Association.
Image by Quinn Dombrowski (Flickr).