Who is in control?

All my life I have been in control of what happens in my life, yes I have made compromises with partners, family and friends, made compromises for work, but generally in control. I have planned, trained, participated and been involved in life.

There have been times where things didn’t go as well as I would have liked, in 1994 I trained and was ready for Ironman, the week before it I crashed on my bike at 80 kph, not a great way to get off a bike. I started the event but was not able to finish it. I ran many marathons, most were good some were really tough, I biked around Taupo 160 km many times, with about 2 hours between the fastest and slowest. I have won medals, trophies and certificates in Athletics, Rugby, Orienteering, Triathlons, Open & Flat Water Kayaking, Swimming and Indoor Bowling.

In my work I had “big” jobs, responsible for multi-million dollar budgets, responsible for setting and negotiating terms of employment for thousands of people, for ensuring the health and safety, training & development, employing & dismissing some of those people. I have worked along-side the best people performing at the highest level, doing amazing things, and the worst people doing nasty corrupt things. I took these things in my stride and dealt with them as they needed to be dealt with, sometimes becoming somewhat unpopular as a result, I have always believed being unpopular is better than being corrupt, many don’t particularly act that way the higher they get.

I have studied and contributed to world-wide research, I have

won awards for business planning and HR related things. I have organised events, and created a new event. Bought and sold houses, got married and unmarried. With all these activities I have been in control, deciding what to do, when to do it and mostly how to do it, finding out what needed to be done and getting on with it.

Now I rely on others, having to have faith they know what they are doing, not able to do anything about what is happening. That has been an interesting transition for me. The urge to find out about and study heart failure has been strong. I have come to the realisation that those treating me know what they are doing and are the best at what they do, so leave it to them to work things out an advise me. There is nothing I can do about it, apart from be positive and optimistic, and stay well, do what I am told and not do things I am told not to do.

The doctors advised they were considering a LVAD, which is a mechanical mechanism that supports the heart function and can take over the distribution of blood round the body. The operation to implant the device is almost as big as a heart transplant and requires the device to be powered externally. It would mean being taken off the transplant list for about 3 months during recovery. To me this sounded a great idea, I might be able to go back to work. I simply couldn’t return to work in my current state. Pauline didn’t like it as I would be removed from the transplant list and miss and opportunity for a transplant. As it happened after consultation overseas with other cardiologists they decided I could not have the implant due to damage to the heart. I was gutted and this finally gave me the understanding that I might be really sick and could only recover by a heart transplant. Any thought of getting better without it gone.

They then looked at using the drug I was on supporting the heart performance with a portable pump. This would mean visiting the clinic or hospital every second day for a refill of the drug, battery change. I would also have a PICC line put into my arm. (A PICC line is a thin, soft, long tube that is inserted into a vein in my arm. The tip of the catheter is positioned in a large vein that carries blood into the heart.) So it was that I now have the pump with me all the time, at the moment it pumps about 5mls per hour of “performance enhancing” drug into me. It has not allowed me to return to work and I am still very limited in what I can do, but it has made me better than I was.

I am not as cold, this is something those who have received transplants and their support people say most, “they are not cold anymore”, as I was. I am able to function much better, my thinking has improved, however even these blogs need proof reading and corrections, before they are published. If you see my posts before Pauline does you will often see nonsense or error ridden thoughts, spelling mistakes, due to reduce function due to lack of blood to the brain. I am sleeping well and able to get round the supermarket, I can still work out complex problems but it takes a wee while and sometimes get confused. Often forgetting things.

I fell over a few weeks ago, which was a fright, broke a rib and did some damage to my leg. I went to A&E and got checked out. They checked with my cardiologist, and he said to wear socks to bed and keep warm. I am still able to do stuff, but not much of the things I want to do. This places a big burden on Pauline and her support has been wonderful.

Now I am waiting and learning, the support group each week is a highlight, I get to talk with others in the same position, even though each story is different. I get to see those who have just had a transplant, meet those who are returning for their 1 or 2 or 5 year and so on check-ups. Folk remain under the care of the transplant team for the rest of their life and return for regular check-ups and when they need care for some reason. This is a time to learn, reflect, share and support, particularly those who have been on the waiting list for 2 yrs and more. These people are optimistic, realistic and resilient, you simply can’t get through it without those characteristics. Most of the research focuses on coping for those with negative psychosocial and behavioural factors. This period will no doubt place stresses on myself, Pauline and our families and friends. We will get through it like we have other hard times and work back toward a normal life, a goal without a plan tends to be just a dream.