Bain Duigan - Kidney Recipient

Bain & Alex

 

In 2005 I was walking to Uni in my jandals when I looked down and saw I had unusually puffy feet. I was in my final year of a Bachelor of Property degree and was quite busy but I thought 'look at those pudgy pinkies, maybe I should make time to go to the doctor'.

The doctor took one look at my feet and said 'you might have kidney problems, I want to send you for tests'. Then I got THE call. I was whisked into hospital, where the kidney team did a biopsy on one of my kidneys.
Sitting in the hospital bed the next day, using the down-time to study for terms tests, I wondered why there was so much fuss. There was no family history of any problem and I felt fine.
Then the renal (kidney) team came into the room en-masse, and announced that I had end stage renal disease and that within a year I could expect to be on dialysis, or maybe I would get longer or maybe sooner.
They said there was not too much they could do to stop the deterioration and then they said 'you can go home now we will see you in a week'.
Kabam!!!
I was left in the room by myself, not expecting, but then hearing the worst. I walked home (and yes it started to rain).
I told my parents, but not many of my friends, it didn't seem real. I was too busy at Uni; it was my final year.
But the news wouldn't go away… from that point on I had monthly kidney specialist appointments and dietician appointments, took blood pressure tablets to maintain some of my remaining kidney function and was assessed for my suitability to receive a kidney transplant.
Kabam, number two!!!
Yes I was physically able to have a transplant but there could be a wait for a deceased donor kidney of up to 5-7 years, because there was a shortage of deceased donor organs.
The next year, 2006, I graduated with a Bachelor of Property from the University of Auckland and went into a kind of limbo-denial, waiting to see how long my remaining kidney function would work.
It went down from 15% function to 12% by the middle of the year and by the end of 2006 I was down to 10% and feeling tired all the time. I couldn't walk up hills and had to sleep for hours in the afternoon. The renal team decided I needed to have an operation on my forearm to make a fistula (where the surgeons turn an external vein into an artery). An artery is needed near the surface of the skin to allow the rather large dialysis needles to more easily pierce the skin.
It seemed the time for dialysis was near.
By my 40th birthday in February 2007 I was so whacked I didn't even know if I was going to be able to attend my own birthday party. I had hired a miniature Waitakere train and called it the Bain-Train Express.
I made it… the Bain-Train Express left the station on time and with me on board.
But only two weeks later the time had indeed come, and the first dialysis needle was inserted in my arm. I thought I'd freak out.
The needle is about the width of a match. There are two of them, one for taking my blood out, to clean in the dialysis machine (it looks kind of like a spa pool filter) and a second needle to return the cleaned blood back into my system.
Training in how to set up the machine 'to do it myself' (inserting my own needles was optional) took two months in a Training Unit attached to Auckland City Hospital. Then I was transferred to the Dialysis Unit at Carrington near Unitec.
What an eye opener. There were people there that had been dialysing for over 10 years, as some were not healthy enough to receive a transplant and had been going three days a week for up to seven hours a session for a decade.
The thought of having years of dialysis treatment was quite horrific. It suddenly became quite real when I saw twenty people in a room connected to blood filled tubes in their arms, while machines whirred and beeped all around me.
But I had a saving grace… I had hope.

The previous year my friend Alex had asked me if there was a register for people to donate a kidney to a stranger, because he would probably be happy to do that. I replied that I didn't think there was a register (all the while thinking… if you are prepared to donate to a stranger... what about me?!?)
When he asked that question I was STILL in denial that I would need dialysis. I didn't want to push it with him, I didn't want to ask, I wanted him to offer, so amazingly I said nothing.

Then in February 2007 when I realised dialysis was imminent I finally said "hey, you know how you said you might donate to a stranger, would you think about donating to me?"
He replied "well I was kinda hinting at that six months ago!"

It actually made us laugh, because I'm not usually slow in coming forward.

So by the time I started dialysis I had the hope of receiving a live donor transplant (the best sort). Alex had been tested and he was compatible with me (and there was only a 1 in 5 chance that he would be compatible).

Then came the tests. We were told that it could take about 10 months to do the 10 tests (mainly on him) that were needed. It was explained to us that they would not let Alex proceed if donating put him at risk. So everything from his blood pressure to his urine was tested. None of the tests were too invasive but Alex had to have a couple of hours off work for each appointment. I went with him to some of appointments, but since I had already been 'worked up' for a deceased donor kidney I didn't have to have that many more tests myself (even though there is a years-long waiting list for a deceased donor organ the team likes to have patients prepared early on, just in case a perfect match comes up).
By August we figured if the remaining tests were okay the transplant looked like it was likely for October. Alex booked a flight to London for late November to start his O.E.
But the tests dragged on at less than one a month and we were told the transplant team were now looking at a February 2008 surgery date.
I felt stink about the idea of holding his life up, but he was very cool about it and said it would be nice to be in NZ for Xmas with his family. He quit his job just before Xmas and moved down to Wellington from Auckland to have summer holidays with his family until the early February 2008 transplant date.
Then in our final pre-op appointment in February (the week before the scheduled transplant date) a bomb was dropped on us. One of my blood tests had come back 'irregular' and needed investigating and the surgery was cancelled!
Alex looked like a deflated balloon when he was told. He almost slid out of his chair.
Within a fortnight my 'blood irregularity' was sorted out and a second transplant date was booked for mid April. Then 10 days before that new transplant date the junior doctors announced they would be striking on the day of the surgery so the surgery was again cancelled!!
Alex and I coped with this set back better than the first cancellation. I had entered into a kind of comic disbelief at the whole scenario.
A third transplant date was set for a month later. Then as that date neared, Alex called from the hospital in Wellington: he had slipped and put his back out really badly and was on morphine and so the surgery was again cancelled. Yes cancelled for a third time!
By this time I was going a bit nuts.
A fourth scheduled surgery date was made for June 24 and this time we made it!
We walked into the ward and saw each other for the first time in months and just laughed. His family came in and mine too and we had a few last minute tests as we prepared ourselves for the next days surgery. Alex was to go in to the operating theatre in the morning for the removal then I would go in, in the afternoon for the 'receiving'.
All went smoothly and we both woke up a couple of hours after surgery feeling peaceful and relaxed. Because we were both under total anaesthetic it's like the surgery didn't even happen. It's quite weird, you just wake up with stitches and a new kidney.
We named the kidney Zac because Alex and I first met at a 2005 election party on Anzac Ave and we had both also briefly been neighbours on that street too.
Being in hospital in a noisy four-bed shared room was not fun for Alex but he was discharged three days later and I was discharged only five days later.
The delays had been frustrating, but we got there in the end.
I think we both grew because of it.
Alex describes the surgery as almost a 'non event'. He just wanted to get out of hospital afterwards and get back to life.
When I was discharged it was explained to me that I would have to attend daily clinics for the first month then regular testing for another year, to make sure my very strong anti-rejection drugs were working. Alex was told to take it easy for the first 6 weeks too.
I still feel a bit blown away that Alex did this for me, because even though the surgery itself wasn't a big deal the amount of time and effort and being in hospital was a big deal.
Alex has said he has felt empowered by being able to do this. I think it has given him an elevated mana not just from me to him, but from those around him giving him high respect.
It's been a beautiful thing outside of the ordinary.
I feel damn lucky to have a new healthy kidney but also quite honoured to be part of a process this special.