Small steps to giant strides.

Hearty Towers

As it happens I am the 318th heart transplant performed in

New Zealand since they began doing them in 1987. So am in a somewhat rare and in many ways privileged group, not that I would recommend membership unless one really needed it. One must face the reality of

possible death before hand. There is a map in Hearty Towers with a numbered pin for each heart and lung transplant and it is a significant moment to us to place our numbered pin on that map, both as a memory and inspiration to others that will come for the same procedure in the future.

We moved to Hearty Towers on 30th September, 10 days from the transplant. As we drove away from the hospital I lost it a bit and became somewhat emotional, and cried a lot, at being alive, being very grateful to the donor and family, for the

care and work the team had done with me, making me healthy almost overnight. As we came into the facility at Greenlane I said I felt hot and wound the window down, first time in 2 years I had felt that. My skin felt warm and I had noticed when others touched me they felt a little cool. Such a nice feeling after being cold for almost 2 years. Pauline shed a few tears with me.

Hearty Towers is a facility for those folk who have had a Heart or Lung Transplant to rehab in, or are returning for check-ups or are being assessed for transplants. It has accommodation for about 14 people plus their support person. Those that have had transplant stay for as long as it takes to be able to go home, between 5-6 weeks and 5 months for some. The facility is if not the only one in the world, one of few that exist for transplant people to rehab in. We share the kitchen and laundry areas and have our own room. It is comfortable, more like a motel than hospital.

The staff are the Transplant Coordinators, highly trained specialist nurses who work Monday – Friday, normal business hours, except when they actually co-ordinate a transplant when they generally work almost 24 hours pulling teams together, organising travel and logistics, ensuring recipient and donor organs are in the right places at the right time. A heart can last for up 6 hours and lungs for up to 10 hours, so timing is critical. The Coordinators play a major role in our recovery with blood tests 2 a week and adjusting the level of drugs we are on.

Pauline lives here with me as my support person, as there are things that I cannot do yet, such as cooking, the laundry etc but that will come in good time. There are others here with us at various stages of post-transplant process, when we arrived there two lung and with myself 4 heart recipients. Others going through the assessment process and those coming back for check-ups are here for a day or up to 3 days, so we get to meet them and share our stories together and learn from others and “mentor” those going through assessment.

The support people often look after each other and we form a little community with the shared journey even though each story is quite different from the illness through to the recovery. Some of the story is the same, we all have had a transplant, so the mechanical stuff is the same they take out the damaged organ and replace it with a healthy one. Most of the story is then different, Hearts and Lung recipients experience very different illnesses and the support prior to transplant is also very different. Lung recipients are often on oxygen permanently, having to push or carry an oxygen bottle with them. Heart recipients are sometimes, like I was connected to a pump to keep the heart in some form of operating, others look healthy until they start to move, they are all very tired and struggle to do any physical activity.

Following transplant the stories are also very different. Lung recipients have a more difficult road than heart recipients due to the exposure to the environment for lungs where the heart is enclosed and not exposed. So we are able to listen and share, humour plays a big part and the euphoria is huge, there are smiles all round and comments on how well we all feel. Some recipients have been ill for a long time and other organs such as kidneys have a lot of recovery to do, including having regular dialysis, others like I have not been ill for a long time so therefore the recovery is less stressful.

A key to the rehab process is fluid loss, weight and strength. During the surgery process there are blood and saline type fluids added to support life during the transplant. This builds up and has to be released by the body, I weighed in at 93kg before surgery and 101kg at my first weighing the following day. I was very podgy and felt like I was walking on rubber balls. Over the next few weeks the fluid went down and with the assistance of a diuretic my weight has now after 4 weeks come down to 92kg with a few more to go yet, one ankle is still much larger than the other one. The weight is going up one day and then down the next, but the swelling is going down.

Rehab

We go the gym every day Monday to Friday, all the transplant recipients go together. We are programmed to do 1 hour, at the beginning it is very light. We do a 6 minute walk test to gauge where one is at in terms of strength and fitness. I manage 374 meters in the 6 minutes, I was a little surprised I managed that much. Comparisons with others is not made, only comparisons as to progress that is made by an individual is used to gauge improvements. So that test set a bench mark and the test is repeated weekly. The second test I did 5 days later I managed 418 meters, 12% improvement, I managed to increase my stride and leg turnover.

They have a set program of exercise that all follow, the difference is the amount and weights used. I started of doing a warm up, walking around a little loop that made me dizzy (motion sickness), so I would do half the laps one way and the other half the other way. Next is the treadmill, I have a knee that needs replacing as well, so that is not so good. The next group has weight added each day or so to increase the resistance and build strength. Then I do a series of leg ups, stand to sits, arm raises and extensions, step ups, stairs, squats, and leg push machine. Then I do time on the bike, I enjoy this, however the bike set is terrible for someone used to riding, the sit are for wide bottomed folk and the peddles are in wrong position for me and so I end up pushing with the heel and eventually slip off, no cleats. Then a warm down and walk beck to Hearty Towers, this includes an incline that I was unable to get up in one go pre-transplant. I now walk up with relative ease and continue to get better each day. I am a little shattered by Fridays, going each day and now up to an hour and half for a session, enjoying most it. My friend Gary, has kindly given me a leg brace that provides support for the knee and helps, it reduces the knee pain to about 20% compared to being without it.

I am glad I kept myself in reasonable physical shape (as good as I could) before the transplant, I am sure that has played a big part in my recovery. I had been swimming most days before my admittance to hospital in March. Following that I walked in the pool for up to 1km, the resistance let me walk slowly without getting out of breath. Once I went onto the pump I got a treadmill and walked on that for 15 minutes a day, sometime twice. I would be very tried afterwards but it certainly helped.

I have set some goals, short term, walk to the fop of One Tree Hill, a 182-meter (597 ft) volcanic peak in Auckland, New Zealand, and about a 700 meter walk to the summit. There is no way I could have even got the first 25 meters pre-transplant. Medium term is to be able return to swimming and re-join squad at GI pool and the Fur Seals at St Heliers and then do some events. For my first event I will request 318 as my race number. Longer term is to participate in the World Transplant Games (2019) and regain my position in what is called the tallies run by Oceanswims.com, I was in the top 5 for the last 5 years before my heart attack.

Support

I have been overwhelmed by the support of family and friends. Pauline has put her life on hold and has had a harder time than I have psychologically, and emotionally, I just had lie there and do what I was told. Pauline has had the burden of worry, concern and care for me. I could not ask for any better. When you use the words “in sickness and in health, until death do us part.” One does not really know what they truly mean until those are faced. We had discussed various scenarios and what would happen if things went wrong. I was confident Pauline would be OK financially and could live in some comfort should I not survive before transplant or during it. I refused to pass away and continued to fight for my life as I still have much to do. Pauline has cared for me since the transplant with breaks from family and friends, as in Hearty Towers I need someone with me 24hrs just in case and to do some things I cannot do.

On the 5th of September I put a post on Facebook which reads: “We have been through good times together achieved things that others are in awe of together, stood tough when things get rough, knowing when to back away or step in and help, and when all else failed Pauline Mills has been there. Thank you so much for being here when I need you” I can only repeat those words many times over.

It is not possible to list all the visitors I have had, each day someone would arrive, the first being Graeme Thomson, I met Graeme at GI pool when I was working there as a lifeguard, I think it was when we were both swimming in the same lane. I was doing my distance training and he would fly up and down and stop. I told him he should get fit and do some longer stuff. Didn’t know he was one of the fastest in the country for his age group. We shared some laughs and grumbles and got to know each other.

Mike Forth was a special visitor to me as he was the last person I swam with before my heart attack. That day I swam about 6km with Pauline and Robina, and came across Mike at the White Stick off St Heliers. We chatted and he asked some questions about the marathon swim that I organised and he was doing the following weekend. I gave him some advice and wished him all the best and he say it all helped him, even though the event was cancelled due to poor weather.

I had the family come in, Leeanna, Dad and Lurline, Brian and Jean, Jennifer and Jason sat with me while Pauline went for swims and shopping and time out, there were some special times there. I has visits from my boss and work colleagues and enjoyed taking about what was happening at work and wanting to get back to it. I had my swimming buddies Roger, Jennifer, Martin, Juliet and Kim arrive and tell me the water was warming up and the adventures they were looking forward to this summer.

My sister, Heather and family Grant, Jade and Max popped in on the way home from an event Max was competing in for shooting, sadly Heather has a cold. I discovered what it must be like for a prisoner waving through a window to her and not being to hug her, as she had provided huge support to Pauline during the operation and days after.

I have had messages from all over the world provide to prayers, thoughts and just to say get well and best wishes. Everyone has been very supportive and caring and I thank everyone for their interest and concern.

I am looking forward to returning to as normal a life, there will be some changes, I need to be very careful of the food I eat due to infection, I need to eat in moderation, and continue to exercise. But the biggest changes will be what is important to me, as when one faces this kind of experience it provides the opportunity to reflect and arrange priorities, which I suggest are:

Health,
Family,
Friends,
Enjoy each day for its special moments and cherish each one, you may never get the chance again,
Get rid of anything in life that is negative including people, there is not time for it!,
Do what you want to do, don’t put it off until tomorrow, (we have bought a motor home now),
Have a job you really enjoy so that is more like a hobby than work.

Some of those may seem like clichés and obvious, but in hectic busy times we forget them, at least I have done so and allowed things like work, negative people and environments invade and impact on me.

As I write this we have been able to go home for the long weekend after 4 weeks 2 days. It has been nice sleeping in our own bed. Sleep has become our biggest issue with not

being able to turn the brain off. We have now employed some strategies that are starting to help, as sleeping pills in the short term are OK, they don't help developing regular quality sleep. We went to our favorite restaurant, I talked with the owner and ensured they understood my eating requirements and blow me over even the well done steak was prepared beautifully, as that is what I have to get used to now.

So thanks to everyone and hope that there is some parts of this interesting and parts useful, and should one ever be confronted in some way take it on and fight it for all its worth. More in the journey to come.