Providing information and support to those
undergoing or contemplating living kidney donation

Patient Stories



I shared my spare... to whom?

John Roberts lives in far Northern NSW with his wife, Tania and their three of their six children. John is a registered nurse, a profession which at its core attracts people who are interested in the health, welfare and the care of others.


John has taken this approach in a most personal way, supported all along the way by his wife Tania and their children.


Why?


John is a member of a most exclusive group – non-directed altruistic kidney donors - or ‘living donors’ who decide to donate a kidney to someone they don’t know.


Let’s meet John and hear his story.


At the age of about 6 or 7 I became aware that people suffered from kidney failure as I lived next door to a school friend who suffered this illness. It often crossed my mind as a young adult and nurse that if it ever became legal, I would consider donating one of my kidneys.


I will never forget the day that I saw the front page of the Daily Telegraph saying that altruistic kidney donations in NSW were now legal.


I guess you could say I experienced what most people would refer to as an epiphany. In that very personal moment, I just knew that one day I would donate a kidney; a chance to make a huge difference to someone’s life and not be affected myself – strangely enough I was even excited at the prospect!


At the time non-directed altruistic became legal, my youngest daughter was 7 and, for this reason, I did not feel totally comfortable pursuing it straight away. Still, in the back of my mind, I just knew it was going to happen at some stage.


By 2012, I was starting to feel more comfortable with the idea and I found myself thinking about it constantly. Over the next 12 months the thoughts moved from simmering on the back burner and moved to the front burner so I decided it was time to ring a leading hospital and find out some facts.


Alone at home on a day off, I decided to do a Google search to find hospitals that perform kidney transplants to ask some questions. Sydney’s Royal North Shore Hospital was the first name and number I came across.


The Renal Team welcomed my call. After some discussion and exchange of details, I was asked to have some basic blood and urine tests and pending the results, the hospital would discuss the next step in process. My only real concern regarding eligibility was whether having had Q Fever in the past would prevent me from donating. There was no need to worry and my ECG, bloods, urine samples and chest X-ray were all perfect.


Living with one kidney is no problem provided you take care of yourself. I believe it actually makes me more aware of my own health and has made a positive impact on my health now and in the future. Many people are born with one and just don’t know it.


I asked the Transplant Coordinator and Physician many questions and nothing bothered me. It was an easy decision for me. It became more like why not??


One aspect that did concern me was the emotional side. I needed to look into potential problems and how I would deal with them. What if the recipient’s immune system rejected my kidney? How would I feel?


I needed to know what I could expect and know that I could cope emotionally. Even though I felt compelled to ask many questions, I still knew deep down that it was meant to be and all would be OK.


I just knew by giving a small part of me to someone else, it was going to make a HUGE difference to that person, while my life would go on relatively normally.
After preliminary tests, much research and still very content with my decision, I arranged for what was to be the first of several appointments at the Renal Department, RNS.


It was at this at this point I shared of my intentions with my wife, Tania, as up until this point I kept my thoughts to myself. I have to admit, I was a little nervous - will she support me?


Initially, Tania responded as though I was having yet another “thought bubble”! The reality set when she saw the conviction on my face with just how serious I was. While she was not in total agreement at first, she did respect my decision and stood right beside me throughout my journey.


My parents were initially shocked and concerned to say the least. My mum said “you can’t be serious” and my father said “mate you have been given two for a reason!” Within minutes my mum did say, “you know I’m not that shocked; it sounds like something you would do”. Understandably, they were both very anxious for me.


Telling our kids was the next hurdle. I called a family meeting and shared my intentions and asked our children’s views. My family will always come first in my life and to have their support meant everything to me.


I received nothing but admiration and support from the eldest five with comments such as “good on you”; “wow, that’s so good”; and “I am so proud of you.” My youngest daughter looked at me with very concerned eyes and said “as long as you are going to be OK”.


I explained the risk of the procedure and shared my feelings. I did my best to assure them that I will NOT be going through with the procedure unless it all feels OK and I pass ALL the tests.


Soon, I was booking flights to Sydney to see the Renal Transplant Co-coordinator, Renal Physician, Dietitian and Social Worker, whom were all happy for me to continue to the next stage.


Over a period of about nine months I had various physical and medical tests. I was told that the ideal situation is for me to have one artery from the aorta to the left kidney with plenty of length in the artery and veins, which helps the recipient. I was pleased I had the right “equipment”!


I also met with two different psychiatrists, with a minimum of 4 months apart to ensure my intentions for donating were for the right reasons.


The whole evaluation process seemed to take forever, as I expected to have all the tests over and done with in the first month.


Two of my children were identified as being compatible to receive a kidney from me, so to put my mind completely at ease they went to a local GP to have their kidney function tested. Both came up trumps. Coming from a family with no history of diabetes or kidney disease also comforted me.


The reality was truly setting in now – I had jumped through ALL the hoops without skipping a beat and felt ready to proceed. The day before surgery was scheduled, I purchased a little teddy and a Good Luck card to wish the recipient many years of good health and us both a speedy recovery. Tania was there to hold my hand.


The keyhole surgery went without a hitch. Three small cuts did most of the work, and another for a drain and then, of course one 12 cm cut just big enough to remove the kidney. I awoke with no problems


I was told the recipient was doing very well and had produced 315 mls of urine in the first 30 minutes! I enjoyed using the PCA for the first 2 days and not needing to get up for a pee was pretty cool, thanks to my catheter!!


On day 2 the drain was removed and I had five nights in hospital and stayed close to the hospital for another 5 days.


The first few days slowed me down a bit but after about 10 days, apart from needing an extra nanna nap here and there, I was almost back to normal. I felt great after the second week as things greatly improved, although some tiredness did remain for a few weeks. I heard that my recipient was doing fantastically well which definitely comforted me immensely.


All in all, the whole process really took little effort on my part and carried only a very small risk – but it was life changing for someone else and their family.


I don’t know who received my kidney but a couple of months ago (around our one year anniversary) I received a heartwarming letter from him/her – so, so very excited and happy. He/she told me that after many years on dialysis, he/she is now living a normal life. There have been no threats of rejection since the transplant and life is great.


People have asked: why should I donate when their own family members have not? My reply was: just because they have family does not mean they are a match; it is more than just being a compatible blood group.


People have also asked: how do you know it’s going to someone worthy? I have every faith in the Renal Team to choose the best match in a recipient, trusting the bigger picture was easy for me. Donors are not allowed to know the identity but the recipient is allowed, if they choose to contact their donors following the operation.


I was fit and healthy before the operation and there’s nothing I could do then that I can’t do now. The most important thing to me is to know the recipient is fit and well which thanks to his/her letter I do now. It would have been terrible to know the kidney had been rejected.


I did not agree to donate for any accolades; I’m just an average Aussie bloke, no amazing talents, no special abilities, just a desire to help my fellow man or woman.


For no more than a few weeks of discomfort, I have changed someone’s life in a very significant way – I FEEL GREAT!! If I could do it again, without hesitation, I would!