In 2013 I underwent a bilateral lung transplant. Basically, during this life saving operation, I got a gorgeous healthy new set of lungs to replace those that had been slowly deteriorating for over three years.
I suffered from an extremely rare condition called Pulmonary Veno Occlusive Disease (PVOD), characterised by narrowing of the pulmonary veins. The final diagnosis of PVOD wasn’t able to be made until after my transplant and in the years leading up to the event, I was treated for Idiopathic Pulmonary Arterial Hypertension (PAH) and all the physical symptoms that accompany this incurable condition.
So why and how did any of this happen? I was relatively healthy all my life, it may have been the result of a childhood illness but there is a possibility that we will never know… After the complicated premature birth of my daughter in 2008 my health deteriorated. I became increasingly breathless, I put this down to lack of fitness, asthma symptoms, iron deficiency and anything else I could think of that could possibly be the cause!
Slowly, over the course of the following months and years, the breathlessness worsened to the point where I felt faint and dizzy most of the time. I couldn’t carry out basic daily tasks or hold a conversation without becoming short of breath. After a number of visits to the GP over the course of a year, I was sent to a cardiac specialist. After a series of tests I was sent directly to the Emergency Department at Christchurch Public hospital... and the rest is history.
The next few years were filled with long hospital stays, home oxygen, trials of medication, right heart catheterisation and lung function tests. Anyone suffering from PAH will understand the daily chore that is keeping yourself alive. You literally have to think about every single breath you take, it is tiring and all consuming. Every day was a battle of mind and body. The oxygen helped, but I would have given anything to have just one minute where I was free from the struggle. Yes, this took strength and determination, but little did I know that I was not the brave one in all of this and that there would be a family who would soon bless me with the most precious gift anyone can ever give – the gift of life.
In the three years after diagnosis in 2010, the regular treatment for PAH was not effective in improving my quality of life. Every small routine daily task was a challenge. Unless I was completely still, I was breathless and when you are raising a toddler, completely still is just not an option!
All of this was to change with a trip to Auckland to the see NZ Heart and Lung Transplant Team at the incredible facility that is Hearty Towers. Here, I meet the extraordinary team of professionals whom would save my life. I met other transplant recipients and for the first time in years I was surrounded with hope. I could see that there was the possibility that I could be one of the lucky ones but I didn’t believe life would ever be as wonderful as it is right now. I only had to wait ten days on the active waiting list before receiving that life changing call. I was overwhelmed by the fact that so many people were acting so quickly to keep me alive. Life Flight was amazing throughout and I was flown to Auckland on a calm crisp evening.
I will be forever grateful for how smoothly everything went. I came through the transplant and have recovered without complication. The desire to make the most of my second chance is fuelled by thoughts of the donor and her family as well as the overwhelming ongoing support from the team at Hearty Towers.
I have never felt more alive than I do today. I have been liberated from the battle of breathlessness and absorb every moment I have with my daughter, with immense pleasure. I work full time in a vibrant, energetic environment and miraculously…I can breathe big, deep, oxygen-filled life giving breaths.
I love my lungs. Thank you will never be enough.