I have a hereditary kidney disease: Polycystic Kidney Disease. I’ve long known that renal failure and dialysis were inevitable.
The decline began in my early sixties and by my late 60s I was on dialysis, which I’ve been doing for the last four years. All the while I was hoping that a kidney donor would be found.
Initially, a few friends kindly volunteered but for various reasons did not meet the donor requirements.
My remaining hope was to receive a deceased donor organ and I found myself on a long list of about 500 people here in New Zealand in the same situation.
I’d knew that a kidney transplant was a high risk, high reward strategy but it was a risk I was prepared to take — not least because it would give me freedom to travel away from home which is impossible on dialysis
In mid 2020 I was called into hospital for a possible transplant, but it failed to eventuate. The organ was rejected by the surgeon. Although disappointed at least I now knew that I was seriously in the running.
In early February this year I was again called into the hospital. My second chance had arrived. Moreover, the donor kidney was in perfect condition and my long wished for transplant was put in motion
Although nervous about the risks — given my age — my excitement at the changes this could make to my life far outweighed any sense of fear.
What I could not have imagined in my worst nightmares was the horrendous experience that was to ensue. I have just emerged from hospital after 5 weeks of something approaching hell on Earth. I can’t describe in detail what this hell comprised of because I’m essentially unaware of what happened in the first three weeks during which I was somewhere between unconsciousness or dementia.
I do know I spent three days in ICU immediately after the operation when things went pear-shaped. I had four procedures, but I’m not sure exactly what these procedures were. I do know I was put into an induced coma twice.
At one point my family were called to the hospital to say goodbye to me. And my poor wife, Yana, stayed by my side helpless and scared throughout all of this. But she never weakened. I was going to live even if it killed her.
Somehow, thanks to the constant ministering of a team of doctors and dedicated nurses I survived. Throughout it all the new kidney was settling in and continued to function. If I could survive the treatment the transplant would be a success.
Even as I write, this it seems petty to remember the sleepless nights, the loss of control over body functions, the pain, the weakness, the endless nights, the cold, the mind boggling frustration — even the fear and uncertainty — of this time in hospital, but at the time it was real and all I knew.
Perhaps the greatest surprise was the speed with which the muscles of my body atrophied. After five weeks I am weaker than a baby and extended recuperation and physio will be required to get me anywhere near normal, whatever my new normal may be.
I’m home now, away from the airport level noise of hospital, under the unflagging care and support of Yana. Her diligent, dare I say dictatorial, nursing is keeping me focused and alive. As well, the hospital outpatient therapy treatment is proving invaluable. None of this is easy.
It’s hard to describe how weak I am. Frankly, it’s hard to accept. I’m advised to be patient to take it easy on myself not to expect too much too soon. This is one of the many lessons I need to learn for my recovery to succeed.
However…
My real reason for writing this is not to share my misery but to share my abiding gratitude to the stranger who, upon losing their own life, was thoughtful enough to donate their organs to the saving of lives of others.
In Aotearoa there is far too little of this selfless generosity. Especially among ethnicities most likely to suffer renal failure. In short: those who are most likely to need kidneys the most are those least likely to be donors themselves.
And all too often even those who have nominated themselves as organ donors, have their wishes overridden by family members for religious or ‘cultural reasons’.
I do understand the discomfort some people might have about organ donation, but the reality is organs we no longer need in death can save lives of the living. And to give somebody the gift of life must surely be one of the most selfless things any human can do for another.
It’s a gift I appreciate more than I can ever say.
And I promise my unknown angel that I will do everything in my power to treasure and treat their gift with the respect it deserves. I will use every extra year of my life to do good things for those around me and the world in general. I will keep your flame burning.
Whoever you are, wherever you are, I am forever in your debt.
I am humbled to read your “Journey” John. You are indeed one of the very few who have received a donor kidney, and survived. Very sad to read your recovery has been a struggle at times, but I am so sure you will contunue to progress and live out quite a good few years yet. I wish you all the best. Julie Johnson.
Wonderful news John, and you’ve hit the nail on the head with your comments about donors. Now all you have to do is get yourself fit again to take on both the golf course and the recording studio. Pass on everyone’s thanks to Yana for keeping you under control when you needed it. You obviously have a wonderful wife.
All the best on your new journey.
John,
Your music has always been your gift of love to strangers. Now that gift of love has been returned to you.
Well earned, I’d say.
Bruce
We are greatly moved by this John Kia Kaha to you xxxx
With love from your ever observing guardian angel.
Rosie ♥️
John, When some people leave Killara Golf Club they are sometimes “out of sight, out of mind”. Not so with you. Even though you left the Club many years ago, everyone that I speak to has glowing memories of you and the friendships you created. In my case, I have kept and treasure the John Hanlon LP that you gave to me maybe 30 years ago.
You have the spirit and strength to get through this. Finally, I strongly believe that every family should discuss and agree to the after life use of the body organs of family members. Colin.
Thanks for your kind message, Colin. When I get stronger and bubble bursts maybe I’ll get to play the new KGC layout one day. By the way I stillll remember you persuading me to sing in Irish pub when you were brave/cheeky enough to do a ‘turn’ first. Did you ever se so much Guiness that arrived at our table after that 🙂 Stay well, John
Congratulations John for having survived that marathon and thank you for sharing the journey with us. Rod looks forward to you joining them at golf. In the meantime take care and let Nurse Yana keep you on track to a speedy recovery. Best wishes from Rod and Rosemarie
I’ve come late to this fantastic news. So happy for you and Yana and your family. Hope you are continuing to feel better and stronger day by day. Here’s to the years ahead
Sending you Aroha and Energy for your strong recovery john.
Sorry to hear you have been to hell and back! But your BACK! that’s the main thing!
I have only just learned of your transplant op by sitting next to your dear friend Craig Scott at Arrowtown golf club 3days ago. Granville who I played with that day shot his age 74 (only for the 163rd time carding a 74 round! In his golfing life which is dam impressive!)
Anyway Craig and Granville good mates …. to cut a long story short! We got talking and one thing lead to another of NZ’s music talent back in day, when it was all about the music and I mentioned your name and that was that!
It was fabulous reminiscing with Craig about the “happen in” days ect and he shared that you had just had your transplant and sent this link to me and I have read these moving and beautiful words to the stranger who has gifted you a longer life.
I am currently not a donor and your story has prompted me to change this.
Look forward to see you on the links.
Kia kaha Mr john Hanlon
xxoo
Maxine
Aka – Muriwaiian Mischief