This is becoming real!

I was discharged from hospital, but kept under a high level of monitoring, the Nurse, Helen, is a specialist Cardiac Nurse and saw me every week. I had been seeing her since late 2016. In April I saw her and we discussed my health. I would always be positive and optimistic, I "felt OK" and just wanted to get better, I believed I could use "willpower" to recover.

Helen met me in the reception area and walked me down to the room she used. She walked quickly and I was stuffed and breathing heavy by the time we got there. The Heart Transplant Cardiologist happen to be there, I told her I was fine. Helen asked me how I really was, and explained if I didn't tell them, they would not know until it was too late. We talked about what was happening, I finally admitted I was feeling like crap compared to how I used to feel.

She arranged for me to see the cardiologist again quickly and I was admitted again to hospital. I also was invited to attend the support group for those in the transplant process. I went to one group before going into hospital, I had not had any of the tests at that stage.

When someone suffers serious heart failure and are considered for heart transplant, there is a process to be followed. A heart transplant is very expensive, over $1 million, the donors are relatively rare and deserve their organs going to those that there is a high likelihood of success.

The criteria is that you are sick enough to warrant a transplant, and well enough to survive the operation, there are no other underlying conditions that may compromise the transplant, for example a kidney or lung disease. The other factors such as psychological issues, support, compliance with medication.

There is a long list of tests and assessments that are applied, and as I had not done well at school having failed School Cert twice I was a little apprehensive, what if I wasn't suitable, I have too much left to do, I don't want to pass on just yet, I want to take my grand-children to Disneyland, experience Pauline fulfil her potential and do that significant thing I have tucked away.

While in hospital I was put on a drug to support the pumping of my heart, I was close to kidney failure, strangely if I was to die it would not have been from heart failure, it would have been as a result of other issues. My heart simply was not pumping enough blood around my body to survive, I was always freezing cold.

The drug I was put on is introduced through an IV line and pumped at a pre-set rate 24 hrs per day. So while in hospital I had this pet IV that went everywhere with me. I tried to walk around the ward 2-4 times a day, went to the TV room and watched the news. I was there for about 3 weeks from late April to early May. When connected to the drug initially I could feel the blood flow surging in my head and returning, very strange feeling.

I improved significantly during this period, I felt a bit like a fraud, lying in a hospital bed, watching movies etc. At the end of that period the amount was slowly reduced and finally withdrawn. It had certainly made a huge difference and I was discharged. I had been through the assessment process while there and was placed on the active transplant list. There are various categories for transplants

• Active: Suitable candidate ready to be considered for any heart matching the blood group and size

• Inactive: Suitable for a transplant but currently too well.

• Deferred: May be suitable but needs to meets some goals e.g. weight loss and/or lifestyle changes

• Declined: Not suitable.

Thankfully I was listed as soon as the assessment process was completed, I went through a few weeks where we did not have a clue how it would go, major concerns were my lung function and the state of my kidney. Thankfully my lungs are in great shape, there can be a major issue with my particular condition causing significant lung function changes due to blood flow, thankfully I had not had suffered heart failure for too long. My kidneys had deteriorated due to a lack of blood flow rather than an underlying disease.

I returned to work and got on with life. I was unable to do much exercise and my ability to walk any distance was severely limited. My colleagues at work worried about me, and were very supportive, and for that I thank them, but I was determined to not let this thing get me. I struggled to work on the bus or train, came home tired and was sleeping longer. I discovered I could walk better in the pool so that became a routine for the next few weeks.

Pauline and I went to the support group each week, we meet folk who have been transplanted, those who are waiting and them that are being assessed, and we discussed various issues with each week having a particular theme. It is a great place to learn about the process, seeing those who have received transplants is a real fill-up each week. They have done 14 hearts so far this year. The support group is held at the facility at Greenlane Clinical Centre in the old National Women's hospital, in fact using the birthing area. It has been remodelled now and is a residence (Called Hearty Towers) where folk stay for their assessments and after the transplant for up to 3 months.

Four weeks after I had been discharged at the support group on a Tuesday we talked with the Transplant Co-ordinator, a specialist nurse, she asked how I was and suggested it might be a good idea to go to the clinic the next day and see the cardiologist. Following that meeting I was admitted to hospital again that day. I was feeling very tried and could feel myself going downhill again.

We had organised to bring the family together that weekend,

so we could celebrate life without a funeral or wedding. I was connected to the drugs via IV again. It was clear that now I could not survive without some significant support. I had now given all my trust to the doctors, more on that later, and did as I was told. They

were great keeping me and Pauline informed with what was going on and involved us in all the decisions being made, even though they had the experience and knowledge, if they had a workplace problem they would consult with us so it made sense.

Another 3 weeks in hospital was now in front of me, while they figured out what was needed to keep me well enough to get to transplant. The family event was moved to the hospital and we had a lovely time together until they needed me for blood tests and other stuff. My 6 year old grand-son stayed and watched them take the blood and was generally quite excited by the experience, it was very cute. The nurse was excellent explaining to Marko what he was doing.