It’s done and on the road to recovery

Every person’s story and journey in transplantation is special and unique, this is my experience, and some is similar to others, whereas some is quite different, I was lucky recovering ahead of the plan so far. It varies person to person.

Day 0

We had been in bed ready to go to sleep, I had been to the hospital, for my drug refill, been to the support group and chatted with the others there, went home and had to go to the dentist for a hygiene clean. The dentist wasn’t far away so I decided to drive there, the car wouldn’t start. I used Pauline’s car, she was going to fill it but wanted to wait for the 10 cent off day, when I came home it had about 15km of petrol left. Pauline had started her new job yesterday, so it was her second day. My pump failed with air in the line which needed to be corrected, I rang a friend to get the help I needed. If my car worked I would have just gone to the chemist around the corner, I left a message with the Transplant Co-ordinator what had happened.

When the phone rang around 9:00 pm, the co-ordinator asked for me, Pauline thought it was a call to check the pump. I put the phone on speaker as I thought is odd to get a call at that time. She said to me “We may have found a heart for you, I wanted to give you early notice and not to take the blood thinning medication” “Bugger” I said as I had it about 6:00 pm as was my schedule. We were told ithat donors heart had not been cross matched so far and there were some more tests to do. She told me she would ring back in about an hour, so around 10:00 pm. Immediately we started to shake, wanting to cry, to shout for joy. We got ourselves prepared, dressed made the bed, turned the TV off and went downstairs and waited, the longest hour now began.

Time stopped, I tried to calm us down, and suggested we just forget about it and go back bed and sleep, great idea, no execution, was never going to work.

The second phone call came just before 10:00 pm asking us to go to the hospital and it may go ahead still there were more tests to be done on compatibility and health of the donor. Well of course the car would not start, we had already alerted Leeanna, our daughter and Jason my son. We were to pick Leeanna up, but had to get her to pick us up. Pauline even made me walk up our drive way, and of course I struggled but managed it. During the drive we were all a bit anxious in our own way. I had thoughts of the donor family and their loss. Fortunately for me they have chosen to save a life and I am the recipient of their generosity, they have chosen to do this, now I have an obligation to them to develop and look after their gift to me.

We arrived at the hospital and I went to the ward with Pauline, while Leeanna and Jason parked their cars. We were met by the transplant co-ordinator and put in a hospital room. I was then shaved and provided blood tests and given a shot to counteract the blood thinners drug I was on. That took about an hour, they then told me to have a shower and use special soap to rid any bacteria, and then they suggested we had a sleep. So Leeanna and Jason left and returned just before I went to theater. About 6:45 am I was rolled into the preparation room, however before that as I slept I scratched my nose quite badly, it was bleeding. I pleaded with Pauline not say anything and she used best endeavours to fix it (cover it up), I was convinced it would be enough to abandon the transplant, it wasn’t.

Day 1

I was prepared by the Anaesthesiologist, there seemed a lot of staff about, it was the change of shift so I would be getting fresh staff. The surgery latest about 8.5 hours, apparently was described as “stormy”. The average is about 4 to 10 hours when all goes well. It seems my body was so used to having a sick heart when they started the new one it operated as the old one had, so they worked away and got it right and up and running, I also had an infection spray when they removed the PICC Line I had in. They got on top of that quickly by the sound of it.

During the operation I was put into a deep sedation with general anesthetist, and a cut is made through the breastbone. Blood flows through a heart-lung bypass machine while the surgeon works on the heart. The diseased heart is removed and the donor's heart is stitched in place. I was kept alive by a machine, a breathing tube was left in so that I could breathe without effort. I was kept in heavy sedation to allow for recovery and monitoring. As the level of sedation was reduced I became more alert and aware. It was odd as I could clearly hear and process what was being said around me, I had the family come and spend time with me and talk and comfort me.

Day 2

I wanted to Vote, but was in Intensive Care, I was confused what day it was, I thought it was Voting Day, but it was actually in a few days’ time, so I tried to communicate a desire to vote, should have done it earlier. I used my finger to indicate writing, Leeanna thought I wanted my computer, I got through to them that I wanted to write down what I wanted, well blow me over, that didn’t go well as there was no way anyone could have worked out what I was trying to communicate. As time went on and we talked, they kept repeating what they had already talked about not aware I could hear and process it. I would say you told me that, I know that, etc. I then thought I was actually dreaming, in other words thinking during the conversation that it was me dreaming they were talking to me. I had to ask each time it happened and I ask “Am I dreaming this?”

I can remember Pauline, my wife and great support person, Leeanna my daughter, Jason my son, David my dad, Heather & Jennifer my sisters and Brian my brother coming and going. My Mum was contacted, she suffers early Alzheimer’s. She has on her wall in her room a chart to help her remember things, one of those is a dream – “Wayne will get well” She understood that I had been operated on and was now on a road to recovery, I cannot wait to get the mum hug and laugh with her again.

Everyone was sent out so they could give me a wash, Pauline asked if I was tired and I nodded, I squeeze her hand tight so she knew I didn’t want her to go and tell her I was OK. I smiled when she told me she loved me. About an hour later Pauline came back and my cardiologist came by and was very happy with the progress.

Never having taken any mind altering drugs, but hearing about the Hallucinations. Well I had them in spades, I could see things for real, for example people moving through plastic room dividers and tunnels, they were clearly there for sterilisation purposes, there were magnificent colours spinning wheels made up of psychedelic visuals, I did not hear voices. I just laid back and enjoyed these visions come, change and then go in spectacular fashion. I saw bubbles floating across the room, changing colour going in various directions. At one stage I wondered if I was OK and then across the ceiling came coloured balls that change to round disks and then to gold medals, at that time I understood I was OK.

As I was taken off sedation and had the breathing tube removed late in the day, leaving very minor damage to my ability to talk, I started by squeezing their hand. They were I think surprised at how lucid I was. My work colleagues were contacted and sent their regards.

Day 3

So it was that I slowly awoke to find a body that would not work, no strength whatsoever, nothing worked, this is going to take a long period of rehab. I was rolled over and completely helpless that day. I was taken out of bed and put in a chair, I had no strength couldn’t do anything, eating was a mystery, I couldn’t find my mouth with a spoon, most of my pumpkin soup ended on the bib rather than in the mouth and every bit I got in was a huge success. This is going take a wee while to recover from. A kind nurse arranged for the process for me to vote and got it sorted for me. I rapidly improved and was standing and taking tiny steps on very bloated feet, like walking on rubber balls tied to the feet.

My sisters came and spent time with me, Pauline was completely exhausted and overwhelmed, I think it was much harder for her as all I had to do was lay there. My Dad and his wife came in and that was a bit emotional and I gave them a hug.

During that day I continued to have periods of Hallucinations, but this time they were birds and animals of various kinds all morphing together and changing, then the best one where Rangitoto emerged for the distance, it was black and raised out from a deep blue sea, it was perfectly formed then dissolved when I reached out for it, it change to green as it dissolved.

I came fully out of sedation during the day and become more lucid, I tried my voice out. It didn’t work to well. Again each person’s experience is quite different. It proved I was lucky and maybe my ability as a youngster to down a yard glass was now somehow paying off. It wasn’t long before I was able to talk and communicate, the following hours saw a complete restoration to normal, I was still weak and impacted by the sedation.

I became aware of a significant amount tubing, lines and wires attached. Whilst I was used to being monitored and having lines and PICC lines this was another whole level, it seemed everything was attached to something. Mind it made it easy to pee without worry. During this I had a dedicated nurse watching over me.

They had a radio playing and in the background I became aware it was music. Then I could hear this song and it sounded familiar and I concentrate of it and was “Heart of Gold” by Neil Young

I want to live,

I want to give

I've been a miner for a heart of gold.

It's these expressions

I never give

That keep me searching for a heart of gold.

And I'm getting old.

Keep me searching for a heart of gold

And I'm getting old.

Day 4

This day I was assisted into a big lazy boy chair, this involved giant walking frame and being assisted on standing, was a strange feeling standing and locking the knees in place, a bit like standing after a marathon swim. The bed was then moved away and a chair put in behind. I then sat in this big chair, good compared to lying on the bed.

I had feeding tubes etc in me, they gave me lunch. I thought the nurse was going to feed me, but nope had to do it myself. I picked up a spoon and tried to eat the soup, mostly the soup was on me rather than in me. I couldn’t find my mouth, later for dinner I did much better and left some jelly so Pauline could see the improvement.

This day was the election, I had meant to vote when special voting opened, but things got in the way. The nurse organised for me to sign a paper that I wanted to cast a vote, then later someone turned up with the papers, I had to sign it, I almost signed it with what looked like my signature. I then cast my vote.

Later I was got back to bed, this time I was assisted to stand again, placed on the frame and then marched on the spot with the nurse blowing his trumpet for me to keep time, it was a very strange feeling but was an amazing experience of being able to move without getting out of breath.

The Nurse arrived with a TV and set it up for me to watch the election. I could make sense of it all and it was cool, enjoyed the evening, even though the result wasn’t arrived at.

My sister, brother, his wife and girls came for a visit, and it was a nice time chatting about normal things, told them about my goal of doing the transplant games in 2019 and said “A goal without a plan is just a dream”.

Had Roast Beef, Chicken soup Ice cream and jelly for dinner, most of the beef went, some chicken soup without spilling any this time and the Ice Cream and Jelly were really enjoyed.

Day 5

Woke up from sleep, disturbed as can only happen in a hospital with checks, observations, alarms, and blood tests on a regular basis, feeling OK. Hallucinations had stopped and I was able to feed myself without sloping it everywhere, various tubes were withdrawn, some folk rip them out themselves and get into all sorts of problems because they only have to be put back.

I had porridge for breakfast for the first time in about 40 years

and enjoyed it. I also had a special drink, they told me they had Strawberry, Chocolate and Vanilla, ten came back and sorry they had a banana one, I laughed that is my favorite flavor and it was delicious.

I was moved from the main ICU to a step-down area, still part of ICU but the nurses did a bit more away from the bed and helped each other. This was a lot quieter and settled, everyone here were fully conscious.

I wrote “I feel great” in our journal and it actually looks OK.

I was again got out of bed into the chair, this I kind of did without support from the nurses, earlier moves required two assisting, today I effectively did it myself, felt amazing. I walked in very controlled steps away from the bed and the chair was again put behind me, but I was required to step backwards this time, I was standing moving for about 5 mins.

I was able to watch TV again and communicate fully including the odd political discussion. I had visitors in and out during the day, including my son, Jason his wife and my 2 grandchildren aged 11 and 6. My Grand-daughter told me she can’t wait to go to Disneyland as I had made that a goal along this journey, all she has to do in return is to do the Rangitoto Swim with me. That was nice and talked to a nephew in Australia by phone.

The Nurses suggested I would likely go to the HDU Ward in the morning, as I did no longer needed the level of care and support. I did get a lovely wash especially the hair wash they did, made me feel real again.

At dinner time I received 2 forks, that was interesting and I just accepted it was part of the rehab process, fortunately Pauline had a knife to cut the meat up with for me, had a laugh with the nurse later when I found out it was simply a cock up, however through dedicated determination I passed the test I thought I had been set.

As I drifted off that night I started to have conversation’s with myself, I thought in my head, the Nurse came over and asked what I wanted, I said nothing did I say that aloud, she smiled and I told her to ignore anything I said and drifted off again talking away.

and said, I told her to ignore anything I said and drifted off again talking away.