ShareLife Blog

Waiting to live.

Thursday, June 27, 2013

Kerri Cargill is a registered nurse and is used to caring for others, in fact it's what she loves to do. This month Kerri is marking one year since she began a leave of absence from work and seven months on the organ transplant waiting list. In this article she writes of the harsh realities and of the golden moments that punctuate her wait.

I wrote this in the early hours of morning when sleep would not come. It is not a unique story, nor earth shattering in any way.  It is not always grammatically correct! It is just a summary of my experiences over the past year. I have decided to share this with ShareLife Australia and my friends in the hope it will encourage you to discuss organ donation with your family and friends.

June 14 was one year to the day that I had to leave work. It was a day of sadness and tears when I realised I was no longer well enough to be at work. At first I told my boss I would "just be off for a couple of days". Then I told her I needed a few weeks ... a few months ... and now it has been a whole year!  When, or if ever, I will be well enough to return to my grad program job and the profession I love is a question no one can answer for me - it is in God's hands!

It has been a roller-coaster year.  A tough, emotional, confronting year in so many ways...

Leaving work was tough. I had a job that I had worked hard over many years to establish and was totally committed to.  It sounds uncool and oh so cliched but I often told family and friends that I was in the job I was born to do - I loved it that much!  A lot of my personal and professional identity - who I was - was defined by my job.  To leave my professional role, therefore hurt a lot. For months I dreamt most nights of being back at work and would wake up crying when I realised this was impossible.  It took me seven months to stop buying work clothes!  Occasionally I would visit my workplace to say hi to colleagues, who were always very happy to see me, however that also filled me with sadness and
an overwhelming anxiety as I would inevitably wonder if I would ever return.  

The sense of shock, loss and chaos that follows sudden, irreversible deterioration of a long term condition is immense. My congenital heart condition & pulmonary hypertension had been stable for nearly ten years. I knew things may go wrong someday but had always hoped it wouldn't happen to me. Plus someday may never come ... Or so I thought!  Anyway, within four months of becoming unwell, a few hospitalizations, quite a few scares I was now attached to oxygen 18 hours a day. I was urgently referred to the heart/lung transplant unit at Sydney's St Vincent's hospital.  It seems I needed a double lung/heart transplant to survive.  Without one, my cardiologist gave me 12 to 18 months to live.

Referral to a transplant unit is both a relief and a huge scare. Meeting the team for the first time is an 'event' - a nerve racking event. That's only the very beginning as the work up for transplant list is exhausting and all consuming.  I travelled to Sydney every week for six weeks for one or two days of medical tests.  When I wasn't in Sydney I was attending medical appointments at home.  With every test, appointment or intervention, we held our breath hoping for 'normal' findings and worried that I would not 'pass' that stage of work-up.

Thankfully I got through all the assessments with no surprises. The final stage of transplant work-up is a meeting with the surgeons. This is BIG as they have the final say as to whether you are listed. This is because surgeons must be confident they can technically do the transplant. It makes sense - if they can't match your unique anatomy with a donor's organs - transplantation is impossible.   The sense of relief & evaporation of anxiety when you 'make' the list is enormous & we celebrated!

And then the waiting begins ...

Of course, every cloud has a silver lining and it turns out that my lining is in fact golden. Golden because I am blessed with extraordinary family and friends who have been there to love, care & support through the tears and laughter, fear and hope.

My family's incredible strength, love and wisdom has enveloped me every single minute of every day. They are steadfast in their focus of getting me to transplant day as healthy as possible.  They are my anchor when things get tough and my compass when I feel lost. No matter what happens they are resilient and positive.  My two young nieces take all the 'medical stuff' in their stride and treat me just the same as before - I love that! They never miss an opportunity to tease and make me laugh. Our extended family and close family friends have also provided fantastic support and will do anything - absolutely anything - to help out.

And friends - fabulous, kind, generous friends who regularly keep in touch and show they care. Real friends who are never "too busy" to call or visit or even just text.  Their spirit of generosity, care and love makes a difference - a huge difference - to my wellbeing.  When I am too sick to go out they come, sit by my bed and share stories and laughter. It is because of these wonderful friends I still feel like I belong somewhere, can still make meaningful contributions to their lives, that I am of value and can retain a sense of being the real Kerri - not just the girl waiting for a heart/lung transplant.

And sometimes my colleagues or even complete strangers have made me smile. So often it is the little acts of kindness that can lift spirits - never, ever underestimate the impact of being kind!

I am not alone! There are thousands of Australians on the organ transplant waiting list right now.  Sadly, our organ donation rate is not world's best - nowhere near it.  I have been on the waiting list nearly seven months and have been told to prepare for a long wait ... maybe a year or more. 

I think about everyone on the waiting list often and wonder if they (like me) sometimes question "Am I waiting to live or am I waiting to die?" because that's what it feels like.  At times I feel so desperate for the phone to ring & hear the transplant coordinator's voice.  At other times I am overwhelmed with gratitude that I have a chance at a second chance. I am so aware that not everyone gets this amazing opportunity.  

However, I am mostly VERY optimistic that I will get new heart/lungs and I often day dream about what my life will be like when I am healthy & can breathe easily!  It's going to be fantastic!  As my friend, Will Chapman says  "... any day now." 

So while I wait and milestones like this pass, I am filled with gratitude for the golden lining to my little cloud ... family, friends, love, kindness, laughter, resilience and hope for the future ... the very essence of life. Xx

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