It’s not something you ever really think about, but when faced with watching your husband of over 34 years slowly deteriorate it made my decision to donate easy, the process was a little more difficult and took a little longer!
Our story starts back many years where routine blood tests showed a reduced function in Brent’s kidneys. He was referred to the Waikato Hospital team and this was monitored over a period of 15 years. Fast forward to 2022 and Brent’s function had reduced to 8%.
We were still biking, he was still working full-time, 12-hour shifts and still golfing but it was obvious that all these things were getting harder, and his health was deteriorating. We biked the Otago rail trail in Feb ‘23 on peddle power and loved every minute, life was fun and good, but reality was that dialysis was not too far off.
After talking with our adult children and letting them know the situation had deteriorated, both offered to be tested as donors, but with them both living overseas Brent would not consider it. I hadn’t initially considered donating because (typical of misinformation) I had been told that a female could not donate to a male. During a routine visit, I asked Brent’s specialist, she said absolutely I could be considered to donate. It made for an interesting drive home as Brent was not initially happy with my decision.
From my first appointment with the transplant coordinators, I have felt informed, and in control. The Waikato team gave me so much information and guidance and continually advised me of my right to withdraw at any stage. I went through thorough testing and monitoring, and as I went through each testing stage it was a great feeling to be ‘one step closer’.
After nearly 12 months of testing, I got the message that I really didn't want to hear,” Aly sorry You're not a match’, and not close enough that Auckland will do the surgery.” I was gutted, a bit angry and very flat, but then Kirsty reminded me of our previous conversations around the Paired Exchange program (ANZKX). We (Brent & I) had just attended a meeting held by the Kidney Society who also outlined the ANZKX program, so we explored this as an option.
The basics of the ANZKX Australia New Zealand Paired exchange program is simple, I donate my kidney, but it couldn’t go directly to Brent. It goes to someone who is a match. That someone has a volunteer donor who, if not a match for Brent, is a match for another donor, and so on, and so on. 13 couples later, Brent has a kidney that is compatible with him, and my kidney has gone on to a match for it. I think of it as the chain of life.
Brent and I were very lucky to find a match through AZZKX, and I can’t say how life changing getting that phone call felt. With Brent at 61 years of age whilst he was on the deceased donor register it was not likely to be the solution for him.
From the minute we accepted the spot the wheels were in motion and the process was flawless. Appointments were made, timelines were set, nothing was missed.
I was contacted by the co-ordinators from the team who outlined the process.
I met with the surgical team, and they explained the physical process, I met with the appointed psychologist; she explained the emotional process.
I met with the social worker who outlined what was available to me in terms of financial compensation.
My surgery went very smoothly, once again so supported by the Auckland Surgical team and coordinators (many of whom I had met as I supported Brent through his surgery the week prior).
I never felt ill-informed, or unsupported in any way and can honestly say I would do it again if I had to or could.
Brent and I are both doing well, both back to work and living life, and I don’t feel any different. Please don’t get me wrong, this is not easy but at the same time not hard, it’s just a process to go through and well worth it. I had the usual issues post-surgery such as tiredness and pain, but both were manageable.
I was well organized. I precooked meals so we would just heat and eat and even at 57 years of age I am still so grateful for the amazing support from my Mum, family and friends, this was vital for the first couple of weeks and seeing the change in Brent is fantastic.
Thanks, and gratitude cannot be tabled enough for both Waikato and Auckland Transplant teams, and the support from the kidney society. They inform, advise, and offer guidance second to none, and it is so clear that they all work so well together. My advice is having the conversation and consider live donation as an option, we need to open the lines of communication and information around live donation more.
- Aly Gwynne