Menu

Carey's Story

20th of March, 2021

On the face of it, you’d think Carey Penn, Managing Director of Electrical & Automation Solutions (EAS) was a pretty normal healthy guy. He’d probably like to think even a bit fitter and active than many people his age. But in 2017 he found out he had kidney disease.

There were no obvious signs to make me think I had any serious health problems. I was a bit tired and hadn’t been feeling 100% for a while; but I put it down to putting in long hours building the business and with young kids, most parents are tired. My wife, Gemma, encouraged me to get a check-up and within days my test results were back, showing my kidney function (EGFR) was down to 21%. Which meant I was at stage 4 kidney failure.

Carey

As you can imagine this all came as a bit of a shock. Kidney Health NZ played an important role in helping me understand my illness and the journey I was now on. “I fully support the work they do especially around educating everyone about the simple steps they can take to ensure their own kidney health.”

I delayed moving on to dialysis for as long as possible, but in 2020 my kidney function dropped to a level where I could no longer avoid it and I needed to start peritoneal dialysis. During the two week wait to have the tube inserted and further two weeks before I could start dialysis was my lowest point. However, now dialysis has become part of my daily routine. I compare the meds, exchanges and monitoring my water intake,  the same as cleaning your teeth, it’s just something you have to do. The team of nurses at the Waikato Renal unit have been an amazing support helping me with getting up and running with my dialysis treatment.

While I supposedly should have been taking this time off to rest and recuperate, I instead viewed it as an opportunity to help others. I found being stuck in one location while having dialysis very limiting so set about designing a mobile stand that gave me the freedom to move around at home or work and interact with my family and colleagues.  I then went on to design and manufacture ten of these stands with the help of Mitchell Race Extreme to donate to the renal unit at Waikato Hospital so others could also enjoy that freedom.

During the ups and downs of getting underway with dialysis I continued to run EAS with the support of my team. One of my biggest challenges was altering my routine to make sure I was back in the office for a lunchtime exchange. The overnight machine has made life easier and I now have a good routine. “I found having a tube hanging out of my stomach strange at first. The belt to tuck it away helped but I still find it a bit of a pain, but I don’t really worry about it now.”

My motivation to help others has inspired the whole of EAS as well as my family to get behind Kidney Health NZ.  In August 2020, EAS staff along with family and friends got together to undertake Lugton’s Round the Bridges, raising $5,000 for Kidney Health NZ.  My daughter Molly and her friends also put in an amazing effort to raise nearly $1,000 running a bake sale at Te Kowhai school in December 2020.

Unfortunately, there is no cure for kidney disease and I am now on the wait list for a donor kidney. “I’m really grateful for my supportive friends and family who are going through the process of getting tested to see if they may be able to donate a kidney to me. Having kidney disease is not something I’d choose to have but I’m also not letting it slow me down. I’m staying focussed on the present and dealing with each step in the process as it comes up. Over the last few years I’ve modified my lifestyle – less beers with the boys (not that they seem to mind as they’ve always got a sober driver), healthier food and I’ve upgraded to an e-bike. The new bike means I can still smash out 50k on the hills without feeling exhausted. In fact, I find it makes me feel better not just physically, but mentally too as it sets me up for the week ahead.”

“For me the biggest challenge of my kidney disease has been my lack of energy. I don’t really do half speed. I am looking forward to the energy a new kidney will bring although the rest of the team at EAS are not so sure they’ll cope with me at full capacity again”.

 

I am passionate about using my position to advocate for the health disparities

1st of March, 2021

I am passionate about using my position to advocate for the health disparities

 John Kearns - Experience Story

 

John Kearns was first diagnosed with renal failure in 1984 when he was 20 and started dialysis in 1986. Six months later he was fortunate to receive his first transplant with a kidney donated by his eldest sister. Subsequently, John has needed two more transplants, with his third successful operation in 2015.  John is a keen advocate for his Muriwhenua iwi and wants to use his position to improve their situation.

 

I spent a total of eight and a half years on dialysis between my three transplants. The transplants  have enabled me to enjoy a far better quality of life and with my wife to enjoy bringing up three daughters, now adults, who now have three mokopuna themselves.

With the gift of transplants and maintaining my health, I have been able to devote time to helping others.

I now volunteer my time as a board member with Kidney Health New Zealand and the Kidney Society in Auckland, as well as being a consumer representative with the National Renal Transplant Leadership Team and recently the Australia New Zealand Society of Nephrologists. This is in conjunction with working as a ship broker.

I am passionate about using my position to advocate for the health disparities my whānau and Māori across Aotearoa, experience when accessing Renal health services.

My whakapapa goes back to the Muriwhenua iwi of Ngāti Kuri and Te Rarawa. I have whānau in the Far North, who travel up to 3 hours each way to attend dialysis. Dialysis usually entails six-hour treatments, three times a week which, on top of the long commute, is both physically and mentally demanding.

Once you’re on dialysis, the average life expectancy is only five years. Evidence further highlights that for Māori and Pasifika people, their life expectancy is less, even when geographical, socioeconomic and demographical factors are taken into account.

Over 68% of Māori and 76% of Pasifika people end up on dialysis because of diabetes. I am a firm believer that having more Māori and Pasifika representation at all levels is one way that we can address this issue.

I consider one of the keys to longevity is my active involvement in what happens with my health and educating myself to become ‘health literate’. This has allowed me to better understand the health issues I have faced. I always encourage people to become actively involved in their health.

I urge everyone to take a simple kidney health test, become aware of your health issues and how you can improve them.

I wouldn’t be alive today without the people who generously donated their kidneys to me.

People should discuss with their whānau if they want to donate, and make sure they take  the opportunity to make a difference.

 

Jenna Crockett shares her story with kidney disease

19th of March, 2019

Jenna Crockett shares her story 

 

Going above and beyond the call to ensure a kidney transplant happens.

31st of January, 2019

Dedicated Health professionals ensuring a kidney transplant happens.

 

Queen of Dialysis

21st of August, 2018

Inspirational TED talk about Home dialysis

 

Matts story

7th of June, 2018

I guess you could say like most kidney transplant recipients I have some scars – both physically and emotionally. The biggest thing I wish people could understand about the illness of kidney disease is that it’s invisible to those who don’t know. And so in order to make it visible many of us in the community try to make it visible in many ways whether that be through their vocation, their sport, or even their art. My name is Matt and this is my story of how as a young male, a kidney transplant was the biggest gift I could ever have received. It’s a gift that keeps on giving and brings life to not only the recipient but those around them.

I have always known my kidney was a little special. Throughout my childhood I would regularly go to appointments and have my blood taken without really knowing why. This was all when I was a child growing up in Liverpool without a care in the world as to what might happen to my sole pelvic kidney I would call Billy Bob in time. Affected by reflux but working exceptionally, I didn’t really understand what this could mean other than I only had one kidney.

In my teenage years after the move to New Zealand, my body managed quite well and Billy Bob took the work in his stride. It seemed humourous naming my kidney but I have since realised it was my way of coping with a disease that I had no control of. I have always tried to deal with things through humour and this would be no different I thought until I was much older. Living life like a regular teenager, it had not hit me as something to worry about. I still enjoyed the friends, the nights out, and the sport. I always imagined I would be invincible.

However, in 2015 I had to take onboard the dreaded news. Billy Bob was not coping anymore and in time would need Billy Jean to help. I took the news as you would expect a young twenty five year old who was looking forward to enjoying what the world had to offer and unwilling to hit pause. So I did what any stubborn young male would do knowing they had anywhere between 18 to 36 months before dialysis or transplant. I packed my bag and headed (ran away) overseas where I  eventually ended up in Ireland. It was there I would realise pause was the only option and I couldn’t escape but I had to fight kidney disease. I had enjoyed I needed to come home. My kidney function had dropped to around 12 percent while ill and I had to make the difficult decision to come back to New Zealand. It is this stubbornness that would get me through the biggest fight of my life 18 months later.

While returning to Wellington and trying to adjust to no guarantee of a future with Billy Bob hanging on I began the search for a live Billy Jean. Luckily my brother in law was a match and we waited for the call. It was terrifying and lonely as I don’t know anyone my age facing such a crisis. So instead of hiding I started sharing my story through Facebook and even found myself on the news as I pushed through my limits and ran two 10km races in early 2017 to be  sure I would be as fit as I could be to take on the transplant. By July 5th 2017, I was exhausted and my body was done without any help. I went in for surgery knowing that I was as fit as I could be and my stubbornness nor family and friend’s support couldn’t carry me over anymore finish lines and I had to let go and trust the doctors and nurses around me. This is when I learnt what life was about.

It was a tough journey but in the months that have followed I have managed  a further two 10km races with two more planned in  2018. Tomorrow is my 29th birthday and as I contemplate what it means to me I have to say everything. I was recently able to get engaged, I am proudly able to look at my nephew and look forward to being an uncle he looks up to, and most of all, my family can carry on with their lives for now without sacrificing so much to the detriment of themselves financially and emotionally. But deep down, I can’t get rid of that feeling I am not done. I just want to give because I am so grateful to be here. With hopes of a transplant games in 2019 and continuing to raise awareness by not hiding my story I hope I can urge others to donate or raise funds for those less fortunate than myself as others die waiting. Life is finally worth living again, and now I get to press play again on what is truly the greatest gift another human can give to another – life.

 

Inspirational Young Man

1st of May, 2018

Sam shares his journey with kidney disease

https://highfitness.co.nz/articles/my-transformation

 

Doing it for Mum

28th of March, 2018

https://givealittle.co.nz/fundraiser/running-for-mum-and-kidney-health-nz

 

Cycling for to raise awareness of Kidney Health

19th of February, 2018

https://givealittle.co.nz/fundraiser/tour-aotearoa-cycle-challenge-are-your-kidneys-ok

 

Donating a kidney

18th of October, 2016

Kidney-kindness