Nardia Robertson shares her journey through transplant
This is a personal perspective by Nardia Robertson, who had a double-lung transplant in 2018.
What my transplant has taught me
2018 was an amazing year for me for many reasons! In February, I moved with my husband and dog to the Mornington Peninsular. In June, I celebrated my 50th birthday. In July, I received a lifesaving double-lung transplant and in November, I started a fashion label, turning a long-time dream into a reality. Looking back, it feels a little like a dream, but as I sit here today breathing in deeply, I know it did happen!
In my early twenties, lung transplant was just starting to become a thing. The Alfred transplant service shared the consulting rooms with the CF unit, exposing me to the possibility of a transplant. From this early time, I have always known I would want to take the opportunity transplant offered.
When the time came towards the end of 2017, I knew my answer before it was asked!
You are stronger than you think
There is no denying cystic fibrosis can be a difficult road at times, with many challenges along the way. The early days when I was relatively well, I could do almost everything I wanted to, but as my condition progressed, the challenges were greater.
Several years ago, I experienced bowel cancer and then a secondary cancer to the lung two years later. I remember thinking that I could cope with cystic fibrosis, but how could my body manage both cystic fibrosis and cancer? There were many long admissions, difficult treatments and a few tears, but to cut a long story short, I made it.
During this time, I learned a lot about myself and more importantly, about others. I discovered the value of inner determination, and how the love and support of those around you can make a tremendous difference. I know my family and friends often felt frustrated that they were unable to do much to help ease my journey, but by just being there, they made a world of difference.
Find your village
In the three to four years before my transplant, cystic fibrosis was becoming a constant battle, with one step forward and two steps back. Slowly, I was losing my independence and feeling my vulnerabilities more than ever. Learning to accept help was a really important part of making it to transplant and my recovery.
The immense support I received during this time was incredibly humbling. From my beautiful mother and husband, to friends and even neighbours. The Alfred CF team were an incredible support, as over the years, I had developed a great relationship with them. CF Community Care linked me with the Peer Support Program and I was able to talk with others about their transplant experience. Identify your team and make sure you have the support you need.
Set your goals
I think one of the most important things you can do for yourself pre and post-transplant (besides your treatments) is to set goals and have other interests in your life. Cystic fibrosis takes up an enormous amount of time, with treatments, appointments and all the rest. I have always seen CF as something I have, not something that has me. Create a life away from CF, the hospital and treatment.
For me, working was my escape from CF. It allowed me to learn, create and meet people. When I could no longer be a reliable employee, CF Community Care gave me a chance to continue to work and contribute to something other than my own health needs.
In 2017, we purchased a block of land and engaged builders to build us a home that many of our friends and family thought we were mad taking on at this time with my declining health. It was a gamble and not for everyone, but for me, it was perfect. I had a project. We spent a lot of time planning and sourcing everything. Thinking back, it was a statement about the life we wanted after my transplant.
It is amazing what you can achieve when you have a goal and something to look forward to at the other end!
The taste of fresh air
One of my fears going into transplant was the thought of waking up on a ventilator. Initially, the ventilator is at 100%, and then slowly, they wean you off oxygen and onto room air. Looking back, I was heavily sedated and did not feel the tubing.
Those first breaths were amazing. I remember breathing super-fast, almost panting, as this was the way I had been breathing for so long. My nurse had to coax me to slow my breathing down and breath normally – this is harder than you think. Breathing easily for the first time in a long time was just amazing. The air felt so fresh and clean like a sea breeze. I had been working so hard to breath for so long, I’d forgotten what fresh clean air reaching into the deepest parts of your lung felt like. It was heaven!
Of course, everyone wonders about the pain, and I would be lying if I said it didn’t hurt, but luckily, they have drugs for that. I did a lot of research, which can be good and bad. I tend to imagine the very worst going into procedures, and my experience has taught me that our thoughts can be our greatest ally or our biggest enemy during challenging times.
You receive amazing support from the medical teams involved in those first few weeks after the transplant. I just kept reminding myself that every day would be a little better and it was! You are so busy learning about things like medication, exercise, diet and test results. I was on an incredible high, filled with relief and an intense sense of gratitude, and looking back, I don’t regret anything!
This morning, I did a little yoga and then went for a long walk to the local café with my husband and dog. I couldn’t have done any of this before.
The gift of life
Leading up to transplant, you are just trying to make it through the day. Your thoughts are taken up with your daily medical routine, tests results and staying alive. Those first few weeks after transplant are amazing for many reasons. Firstly, you are learning to live and breathe again.
Not long after I got out of ICU and back on the ward, my thoughts turned to my donor. This can be quite confronting, confusing and very emotional, as you piece together the profound experience you have just gone through.
Someone you will never meet has given you the opportunity for a new life. A family you may never know has transcended their own grief to give a stranger the opportunity for a new life. And an amazing group of doctors, nurses and allied health individuals have come together to make this happen.
Grateful, humbled, relieved, and overwhelmed – It was very hard to find the words to truly express my feelings and sense of gratitude to so many people.
The post-transplant rollercoaster
I was able to return home 11 days after my transplant with what the doctors describe as a textbook recovery. But I soon realised this was just the beginning. I have had several setbacks along the way, as it seems is typical of the first year or so. But I can honestly say as my second anniversary approaches, I do not regret a thing and I am looking forward to many happy years ahead. You learn that like with CF, everyone’s journey post-transplant is their own and no two patients will have the same journey. Life doesn’t always go to plan. It is a work in progress and I am up for the challenge!
A change of teams
Before the transplant, I had built a great relationship with the CF unit at the Alfred. I had the same specialist, Professor John Wilson, as my consultant for 30 years. After the transplant, you change from the CF unit to the transplant unit, with a completely new medical team. This for me was a big challenge.
In the beginning, I felt quite lost and a little sad that I had lost such an important support network, but then I began to realise, being so well, I didn’t need that intense medical support I had received before transplant. I now have time to build new relationships as I navigate the transplant road and create a positive relationship with my new team.
The CF landscape has changed so much in the past 50 years. I was born in 1968 with a bleak future, and the fact that I have lived to see so many positive changes to the CF story is incredible. Sometimes when I’m at the Alfred for an appointment, I see my CF team across the hall and I can only smile, because I know they are working to make the same difference to the next generation of CF people as they did with me!
Where to from here
Sadly, earlier this year I lost my beloved mother unexpectedly after a short illness. She has been by my side throughout my entire life, encouraging me forward after a setback, always in my corner. We were a team when it came to fighting CF. Most importantly, she taught me to be strong and never give up.
Today she is by my side as I fulfil my dream of starting a womenswear clothing label. Caravan + Co. I know she would love that I am doing what I love and when I work, she feels very close to me and inspires me every day.
You can see Nardia’s work in progress at www.caravanco.com.au
This article was published in February 2021.
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