One year on post Transplant

This time last year I was on a list, the list contained the names of people waiting, waiting for a donor heart to become available, waiting for someone to die to allow me to live. That time was tough, tougher for Pauline, my wife. Each night going to sleep, wondering if I would awake in the morning, each morning relieved that I did wake up to wait another day. It was tough going to hospital every second day to get my drugs refilled, the pump checked and batteries changed. It was tough not being able to work and not earning any money.

On Tuesday this week we went to the hospital to visit Robert, who was listed a month before I was. He has had 2 false alarms, where a donor heart was not suitable in the final analysis. He looked like I did a little over a year ago, he described life as I remembered it then, it was like looking in the mirror, he was attached to machines and drugs as I was, he struggled to walk. On Saturday 28 September 2018 he passed away. It makes me so grateful and brings it home how real it all is. I went to school with Robert, we share things in common he has gone and I have survived, this journey is such, I am lucky. RIP my friend Robert.

Then a phone call came on the evening of the 19th September 2017 telling me they had a heart and could I come to the hospital. A gift of life delivered.

The past year has been one of hope, ups and downs, and steps forward and backwards. Becoming stronger and fitter. Changing drug regimes, tests and more tests, frequent and constant check-ups, visits to the doctors and hospital. A stay in Rotorua Hospital for an infection following swimming again. Starting work again and gaining confidence in that, and living life to the fullest that we can. Making the most of the motor home we purchased, enjoying going away on weekends, exploring places and doing some bike events.

This time 2 years ago we went to the UK for Pauline to take on the Lake Windermere one way swim of 16 km. That was our 4 countries (USA, Wales, England, Scotland), 4 marathon swims (57 km), 4 weeks tour she did us proud, I did a couple of small events. We thought I was getting better then, it sure changed. This past month we have done 3 bike trails (122 km), 3 40km+ bike races (130 km), 3 weekends.

This time last year I celebrated my “last” birthday with my family. I wanted to have them together as I wasn’t sure at that time if I would survive much longer, the signs were not good. I was very ill, I tried not to show it or let on, this year I am spending my birthday getting skin cancers dealt too and then go to the Comedy Club for some laughs. I was going to work on my birthday for the first ever time, but that can’t be.

I have being doing well, apart from my knees, which cause a lot of pain, my skin and the shoulder (rotator cuff injury). Most people comment on how well I look, I am never sure if they are comparing me to how I looked this time last year or not. Is a transplant a cure, in simple terms the answer from my perspective is yes and no. Yes the dying heart is replaced with a healthy one, so from that perspective it is, however there are the side effects of the drugs to consider.

The most common causes of death following a heart transplant is infection rather than rejection. Patients on drugs to prevent rejection of the new heart are at risk for developing kidney damage, high blood pressure, osteoporosis (a severe thinning of the bones, which can cause fractures), and lymphoma (a type of cancer that affects cells of the immune system). Atherosclerosis ("hardening of the arteries") of the heart's arteries or coronary artery disease develops in almost half the patients who receive transplants. And many of them have no symptoms, such as angina (chest pain), because they have no sensations in their new hearts.

I have kidney damage due to a lack of blood during heart failure, they have recovered a little so far, and also have developed high blood pressure, such that we monitor it daily now and have drugs to help manage it.

On 4th September (my birthday) I spent at the Dermatology Department at Greenlane Clinical Center having skin cancer

cut out and biopsy taken from my nose and eyebrow. I was on the table for about 2 hours and anesthetic was used, unfortunately for me a small area of my shoulder refused to go to sleep so we proceeded whilst I clenched my teeth and hands. Sadly the doctor then stabbed herself with the needle so we had a wee drama and I had to have blood tests to assure everyone she was not at risk. So I can’t exercise for at least 2 weeks.

On the 11th September I had my 1st annual check-up. This involved the usual blood tests, a heart biopsy, a bone scan, echocardiogram scan (An echocardiogram, or "echo", is a scan used to look at the heart and nearby blood vessels) and chat & check-up with my cardiologist. Results were great with zero rejection, all blood readings normal including an improvement in my kidney performance, and the best they have been. As a result of that I have been scheduled for a coronary angiogram they held off on that due to the kidneys, so we are very happy with that.

A coronary angiogram is a procedure that uses X-ray imaging to see your heart's blood vessels. The test is generally done to see if there's a restriction in blood flow going to the heart.

Coronary angiograms are part of a general group of procedures known as heart (cardiac) catheterizations. Cardiac catheterization procedures can both diagnose and treat heart and blood vessel conditions. A coronary angiogram, which can help diagnose heart conditions, is the most common type of cardiac catheterization procedure.

During a coronary angiogram, a type of dye that's visible by an X-ray machine is injected into the blood vessels of your heart. The X-ray machine rapidly takes a series of images (angiograms), offering a look at your blood vessels. If necessary, your doctor can open clogged heart arteries (angioplasty) during your coronary angiogram.

The result of this is that there is no evidence of any cardiac disease or blocking, in fact they asked me to be part of a study they are doing to create a simulation of the heart to help diagnose heart problems due to the health of my heart. So fantastic.

We took part in the Winter Fun Ride Series during August over 3 weeks, the first being at Ohinewai School (40 km), then Tamahere Community Hall (50 km) and Leamington School, Cambridge (42 km). Pauline rode her road bike in the first one. I was intending doing this series on my road bike, however damaging the shoulder put paid to that, I couldn’t ride it due to the position and having to lean on the shoulder, so I used the ebike. I was getting fit and on the last one decided to “race” it. Most people think riding an ebike is cheating. It allows me to do things I couldn’t otherwise to do to physical limitations. When I finished I felt as if I had completed a 40km bike race at max energy, yes it help me get up the hills and I reached speeds of up to 40 kph on the flat. Not as fast as can be reached on a road bike and I finished in the middle of the field. Pauline and I raced to the finish line with another guy on a road bike, with Pauline managing to hold us out, we all got the same time. It was great fun.

We have had fun going away over the weekends and doing the Te Awa River ride (https://www.te-awa.org.nz/). The Te Awa walk and cycleway stretches along the Waikato River, from Ngaruawahia in the north to Karapiro in the south. It was beautiful in parts and mostly enjoyable from well paved pathways next to the Waikato River to getting lost and some of the Cafes and markets along the way. Each weekend we rode a stage there and back, overnight we would stay at a golf club so we could connect to the power and recharge the batteries for the bikes.

This past week has been the anniversary week of my transplant. It has been wonderful, surreal and a great week. On the Monday I had a collective agreement to mediate, it was with the group who operate the heart lung machines used in transplants. They had issued strike notices, which meant they would withdraw their labour for a period of time. When that happens my office is notified and one of us mediators are allocated the role of being the parties together and facilitating discussions and providing support and assistance to trying to find a way to settle the dispute.

I found it emotional when I realised what they did, and that they had been an integral part of my transplant. Should they go on strike for a period of time and a donor become available during that time, no transplant could go ahead. Anyway over the Monday and Friday I was able to get the parties together and arrive at a settlement that will go to the vote in the next week or so and has averted the strikes planned for next week.

On the day of the anniversary my work colleagues put on a

cake and made a fuss. It was a wonderful wee celebration of the day as at that time 12 months before I had just gone into theatre to begin the transplant. Pauline, Leeanna and I went out for dinner to celebrate and reminisce on the days leading up to and following the transplant.

I also appeared on Breakfast on national TV in a segment called Today is the Day. That was nice.

Pauline gave me a lovely present to remember the day.

We celebrated my anniversary or Heartiversary on the weekend at a local hall, with family and friends. There were people from each part of my life there including a heart recipient, Paul and a lung recipient, Dave, work colleagues and swimmers and other sports folks. We had a wonderful afternoon and heartfelt “speeches” from Leeanna and Pauline in particular. It was a celebration of life and being thankful for the 2nd chance I have been given.