3 years on from the beginning of the end

and 7 months from a new beginning.

Each day getting older but knowing more.

More of the good, more of the bad.

More of the happy more of the sad.

I take what I learn and apply it to life, all of the pain, struggles and strife.

I use it to give me strength. I use it to give me compassion.

And if by chance my life can inspire then I will work that much harder and never tire.

(in collaboration with another transplant friend David Holley)

You don't get a new heart unless death is the alternative; that is the reality some of us are confronted with. Briefly April 19th 2015 I had a heart attack after completing a 2 hour swim. I was fit, healthy and looking forward to swimming a marathon the following weekend and thought while in the Ambulance that people die from these. April 2016 I had an implantable cardioverter defibrillator (ICD) put in, October 2016 had a cardiac arrest, April 2017 told I may need a heart transplant assessment, May 2017 assessed and listed for heart transplant, June 2017 stopped work, September 20th 2017 Transplanted.

Life over that time changed a lot. I have always been active, worked hard, organised things, in control of myself. I didn’t realise how sick I was becoming, I believed I was getting better, but wasn’t. I had to learn to surrender myself to the transplant team, have faith in them and their skill and knowledge, the same as I ask those that I mediate with to do the same, have trust in the process and my skill to assist them to an outcome.

It was a time of new learning. I was tough, I didn’t get sick, I was positive and optimistic that I would get better, not more sick and become terminally ill. Pauline (my wife) and I went to the UK for an amazing holiday in August and September 2016. I did some swims there, Pauline did 4 Marathon swims in 4 weeks and swam in four countries, USA (California), Wales, England and Scotland. She did three 10 km swims and 16km, the length of Lake Windermere on my birthday. We travelled around the UK in a motor home, visited her family.

We came home life was good, then I had a cardiac arrest in the pool. At the time I knew something had happened, I didn’t have a clue that I had gone, lying on the bottom for about a minute. I got a phone call from the hospital the following day. I went onto a watch list and had regular checks. I was sure it was my fault I started too hard, didn’t warm up properly, I went too fast, it had nothing to do with a sick heart, as it was getting better.

I had hoped to do some events that summer starting in November. I kept swimming and building up but didn’t enter any events, as I didn’t want to put myself at risk and organisers to any trouble. I went through Christmas and had a nice time, enjoyed the family. I was getting better for sure. I was getting around OK, I did get a bit breathless when walking but I didn’t like walking because of my knee anyway. I never got breathless while swimming, I was building up and could do a kilometre without stopping.

Pauline had tried to qualify for the Rottnest swim (20Km) and I supported her kayaking with her. Sadly her health didn’t hold up, her iron levels dropped, her energy levels dropped. We went anyway and enjoyed the experience and she would like to return again one day. I went from swim to swim each weekend supporting her.

Work was going well, I decided to enter a short swim at Blue Lake near Rotorua. 2 friends swam with me, one on each side, just in case. I finished well and got the gold medal for my age group and finished in the top 3rd of the field. I was getting better.

I entered an event at Lake Okatinia in March, I was also organising the Auckland Marathon Swim in April, as I did each year. I had a regular appointment with the Pacemaker clinic to check the ICD. They called me a few days later and asked me back to reprogram the unit. The following Monday I got a call to ask me to some in for a consultation. They admitted me on the Tuesday and on the Thursday I was asking if I would be able to go do my swim on Sunday. I was told then that I would be referred for a heart transplant. I guess I wasn’t getting better, I didn’t sleep for 2 days.

They got the issues under control and I was discharged, but now on a high watch. I visited the hospital every week or 2 weekly. I was monitored closely and had a cardiac nurse that I could contact whenever I wanted. She gave me a right bollocking for disguising my symptoms by being so optimistic and positive. That day I realised things might not be so good for me, that day I realised my future was not what I thought it was. That day I quietly relinquished any control, and I guess my life, to the cardiologists, the doctors and nurses. That day more so than the day I had the heart attack I understood I was really fighting for my life.

I have always set goals, planned, reviewed, understood the resources needed to be applied to reach the goal, reviewed progress, analysed performance, understood changes, researched and made those goals come alive either for myself, others or organisations. Now my only goal was to survive, to get through this so that I could contribute again. I never knew if I would make it though, that took some learning to rely totally on others expertise, let them make all the decisions about my life, what to take, when to go to hospital and when to go home, Let them know if I was going away to see my family in Northland (170km) away.

I had to learn about my drugs, about my condition, what was wrong and what that meant. I learned a whole lot of medical terms, some I couldn’t pronounce, learnt the impact and effects of each drug I was on. I guess I learnt almost as much as a doctor would know about what was going on. I resisted and never did look at anything on the internet. I talked with my team, picked up information from the support group I attended every Tuesday.

Whilst I continued to work I had my optimistic and positive face on. It was obvious to my work colleagues that I was going downhill, but I never let it impact on work. It became increasing difficult to get to work, catching the bus and walking from the car to the bus/train and then getting to the office. There were days that it was achieved in 10-20 meter blocks. At work there was a toilet halfway between my desk and the mediation rooms, so I would stop in just to wash my hands and have a rest to and fro.

My assessment was scheduled for the end of May. My INR, measure for blood thinners, also called anti-clotting medicines or anticoagulants, which should have between 2.5 and 3 was in fact 7. That meant that I could simply start to bleed internally and not stopped. Instead of the test scheduled I was admitted and they adjusted drugs etc for 3 days and then had the test over the balance of the week. I was told I might need an Lvad to support my heart during the wait for transplant if I was suitable. On the Friday I was listed, I passed the tests, I was considered strong enough to survive the operation and did not have underlying kidney or liver issues.

I was delighted at that news, it gave me hope and a pathway that was positive. Over the next week they continued to administer drugs to manage the heart failure. I was permanently attached via a picc line to a pump in hospital, wherever I went it came. I went for walks around the ward, I read books, I watched netflix, I slept, I had visitors, I waited. I had to learn patience, I had to learn that I was no longer in control.

They came to tell me I was not able to have the Lvad put in, my heart was too damaged to survive the operation. It was devastating to me, Pauline was pleased as I would not come off the waiting list for 3 months to recover. I felt it removed a chance of life through to transplant, the Lvad would give me an increased quality of life, without it I would simply continue to deteriorate.

They came up with a portable pump that I could go home with, I had to go to hospital every 2nd day to have it refilled, batteries changed, and checked. I had to stop work. I applied for a year off on unpaid leave that was approved. I had always been the one to administer and approve such things, I was now on the receiving end of the process. Again I had to learn that I was not in control. That was interesting as I knew the process I was going through, to others it was so big, and almost abstract, they compared it to what they knew, whether based on fact or fiction, any operation could be compared in the mind of others. So I had to adjust my thinking to allow for others to empathise as they did in the way they did, often with no real understanding of the seriousness of the situation. Sometimes when others asked, and I told them if I don’t get a heart transplant I was going to pass away, they asked me what date I was having the operation, sometimes my reply was “when you die so that I can have yours, do you know when you are going to die?” Mostly they got it then.

The time from then was hard, each day much like the day before, I wanted to do things but simply couldn’t didn’t have the energy. I got a walking treadmill so that I could walk each day, I started at 6 minutes, that was all I could do, and slowly built that to 15 minutes in the morning and afternoon when I could physically do that. I had to sleep or rest afterward, all my physical prowess had gone, I had to come to terms with not being active, Pauline would take me for walks on the waterfront, they were hard work. I used to run along the waterfront and back (16 km) just for fun, I used to swim along the waterfront, now I couldn’t manage 100 meters without having the stop for a rest. I had to learn that I did have limits right then, that pushing myself was just likely to kill me faster, I had to learn to pace myself, that rest was very important and whilst important, exercise was simply to maintain strength to assist in recovery rather than healthy living.

So it was that the call came on the evening of the 19th September 2017, “We have a heart for you”. Wow nothing could prepare you for that moment, I had thought about it, imagined it, thought about my response, nothing prepared me for the emotions of the next few hours, delight and fear perhaps capture it best, everything in between. I went to the hospital, I had already handed myself mentally over to others, I now check my humility in at the desk. As it turned out there was no place for that. I had learnt that with earlier stays in hospital, but this was at a whole new level. I was shaved shoulders to toes, when I awoke I could not move, my first meal went all over me, I had my hair and body washed for me, I was helpless and really the only thing I could do was smile, which I did the whole time.

I applied myself from that point on getting well and recovery, I knew how to get fit, I knew I had to pace myself as getting fully fit again was going to take months perhaps years, I had to learn how my heart operated while exercising, as there is a delay. I had some setbacks, nothing that drugs didn’t fix. I made amazing progress, I had to remind myself of what I had been through and not rush things. My view on life has not really changed, I am still optimistic, I still like to challenge myself, I can now set new goals, plan and prepare for a future, who knows what that holds, I am “well” again.

I think that biggest learning I have had through this experience is that one has to rely on others, in fact at time to place absolute trust in others, some call that faith (not a religious term). I experienced absolute unconditional love (perhaps for the first time in my life) with Pauline my wife who stood by me, helped me and picked me up. Yes it got hard at times, she didn’t always understand how I felt, why I couldn’t just go for a walk, I think maybe Pauline learnt some things too.

The learnings have been great. The journey tough but rewarding, would I do it again, sure would if I had to.

At the moment I am trying to come to terms with not being able to swim following the issues with my white blood cells dropping and getting an infection. I have set some goals for bike riding, Pauline winning an Ebike has opened up possibilities for me to do things I couldn’t otherwise do. Together Pauline and I are creating new things while maintaining some of the things we did before. This week is the anniversary of the beginning of the end, the Auckland Marathon Swim on Sunday is likely to be the largest event of it’s kind in New Zealand to date, to give others the opportunity to do what I loved doing is gratifying and very satisfying, to give is better than receiving.

If I get the chance to be a donor when my time comes that is what I expect my loved ones to do, even if it is only my skin. The gift that I have been given is one that not many experience but is one that we can all get a sample of by giving a bit of our time to enable others to do things they may not be able to do if it wasn’t for our generosity.

Each day getting older but knowing more.

More of the good, more of the bad.

More of the happy more of the sad.

I take what I learn and apply it to life, all of the pain, struggles and strife.I use it to give me strength. I use it to give me compassion.And if by chance my life can inspire then I will work that much harder and never tire.

use it to give me strength. I use it to give me compassion.

And if by chance my life can inspire then I will work that much harder and never tire.