I am an organ donor recipient. It still seems odd to say (or write) that. It is not a description that you ever imagine will apply to you. I had many visions of how I imagined my life would look as I got older; none included having diabetes, living on dialysis or becoming an organ recipient. I feel like quoting Forrest Gump at this point, but I will refrain.
It is only now that I sit down to reflect and write this blog, that I realise that I am about to unleash every cliché known to man in order to describe my feelings in relation to organ donation – because I’ve found there are no other ways to describe some of these feelings.
I am alive and well today due to the generosity of a family who I will never know and will never meet. Maybe I will pass one of them on the street one day but I’ll never know and nor will they. What little I know about my donor, I keep to myself – as I am well aware of another old cliché, ‘six degrees of Kevin Bacon’.
Just over five years ago, I received a kidney and pancreas from a deceased donor. One selfless decision by a group of people I will never meet changed my life. (Well, along with the incredible doctors, nurses and surgeons in the Transplant Department at Monash Medical Centre in Melbourne).
After 30 plus years of type 1 diabetes, most of the text-book diabetes complications, 20 years of kidney disease, two years of dialysis…I was finally granted a transplant! It was then that I was given a whole lot of my life back.
It is still odd when people ask me if I still have diabetes post-transplant. I always pause which makes them think that I’m an idiot; ‘it’s a yes or no question surely?’ But it’s not for me. No, I no longer have type 1 diabetes but perhaps one day I will again. Perhaps one day I will be diagnosed with type 2 (oh the irony …) But now, and for the past five years, no, I have not had diabetes.
For those of you who do have diabetes, you may be thinking ‘oh that’s like a cure. That must be fantastic’. Yes, it is fantastic, but the long road to my transplant was not something I would wish on anybody. Life post-transplant is not easy either; it is just a new set of ‘challenges’. And as I always say, for me “diabetes is the gift that keeps on giving”. I no longer diagnostically have diabetes but the complications and psychological impact of living with type 1 for most of my life, still live on. To me, I will always be a person living with diabetes.
I know people hear the words ‘gift of life’ often. It is only when this has actually happened to you, that you realise that there is no other way to describe the acceptance of someone else’s functioning organs. My transplant changed my life in ways that I will never be able to adequately articulate.
I am writing about my story during DonateLife Week to encourage people to #Havethechat. A lot of my friends say ‘I’m registered as an organ donor’. That’s great, but it’s not enough. Legally, your registration is enough to enable your organs to be used if you pass away in the right circumstances (less than one per cent of people will die in hospital in the specific circumstances where organ donation is possible). Even so, your family will still be asked to give their consent. If this is a discussion you have never had, this must be an impossibly difficult decision to make at such a traumatic time. If however you have had this discussion with your family, the decision can be made automatically based on their absolute certainty of what your wishes were on the subject.
I am hoping that perhaps just by reading my story, it may enable you to have this conversation with your family. Just saying, “I read a blog today about a girl who had diabetes and then had a kidney/pancreas transplant …..” might just open the door to that conversation for you.
The DonateLife website will answer any questions you may have to allow you and your family to make an informed decision.
My friends and family are always keen to celebrate the anniversary of my transplant but I find it a very confronting day each year. I am very cognisant of the fact that, as I sit and celebrate each year of my new life, a family is sitting somewhere commemorating the day that they lost their loved one. I hope they know that I am forever grateful and think of them daily as I try to do my best for myself and my donor.
I used to be just like you and only vaguely considered organ donation as a concept because I had never known anyone who had actually had an organ transplant. I now sit in a clinic every eight weeks surrounded by dozens of other people of all ages, races and circumstances and realise that I am amongst many whose lives have been saved or changed due to the ultimate gift of generosity by an unknown family.
Please think about your wishes in relation to organ donation this week. I am very happy to be the introduction you need to have the chat.
The writer of this blog is a Melbourne woman who wishes to remain anonymous.