On the to a new life (day 6 - 10)
Day 6
I woke up to the news that I was going to the ward soon, I was got out of bed again with less assistance again and actually managed to stand by myself
from the bed to the frame. I did some more on the spot marching before I sat in the lazy boy chair and had breakfast, Cornflakes today as I wanted to see if I could eat crunchy food, a fruit yoghurt, orange juice and a banana drink, very tidy and not a drop drippled or dropped.
A new bed was rolled in, apparently they don’t share between the wards, and I stood again marched, but this time actually moved forward and turned around and back to the new bed. It was so cool to be able to move again, felt like some independence returning. It was a hoot when I saw the bed was stamped with Rangitoto Ward. Sometimes fate is just meant to be, Rangitoto is an extinct volcano in the Waitemata Harbour, I have kayaked around it, swam both ways to it and
back, help run the Annual Rangitoto Swim with Auckland Central Masters, it is one of those landmarks from childhood. One of the goals I set at the beginning of becoming ill was to swim with my grand-daughter from Rangitoto to St Heliers where we live, so the bed was most suitable.
Later in the day Pauline was with me and the physio’s turned up, two really nice guys, they had a big frame got me up and off we went for a walk, Pauline saw the smile on my face it lit up and my eyes sparkled. I walked supported by the frame down the ward and back, was like amazing to go from where I was 2 days earlier to this. The physio’s did not support me on the way back, they escorted me. I couldn't stop smiling and was excited.
One of the things about this recovery that seems really important is activity followed by rest, and as the activity increases the rest needs to be of better quality and much longer than the activity. Guess it is like doing long distance training where rest and recovery is as important and the plan to build the kilometers (miles) over time.
I had a visit from a swim buddy Gary, was nice as he is the first person apart from family and staff I had interacted with, he was delighted in how I looked and could communicate.
My Cardiologist and Transplant Co-Ordinator came by, checked in, sorted out the drugs I was on, and told me I would likely move to Hearty Towers at the end of the week. I was also able to wear normal clothes from the morning rather than the hospital PJ’s or gown. My first biopsy (where they nip a piece of heart and check for rejection) will be at the end of the week. This is an important check for rejection and that they alter the level of drugs on.
Had my previous Cardiologist Nurse who used to look after me after the heart attack checking medication and generally keeping an eye on me for several years, she was the one that figured out how sick I really was and gave me a right bollocking (which as it turns out I needed), to tell it how it was “not be so darned optimistic and determined because this is not coming right, it's not going to fix itself and we can't fix it”. She maintained my health through too early in 2017 when I was passed to the transplant team for assessment etc. She was my guardian angel and I am so grateful to her, both as nurse but more as teacher.
My very special friend Hana rang, Hana is both Pauline's and my inspiration to swimming, she encouraged us, swam with us, and developed a close bond on a particular swim that didn’t go so well for Hana. It was a special chat as she had visited us the weekend before we got the call, so was also one of the last people to see me in the state I had become.
I also was able to speak to my Mum and shed a tear or two with joy with her, she mostly got what had happened and told me to get better now. All I needed next was a Mum's hug but that will have wait a wee while. I talked about the future that I didn’t have. Guess when you face the alternative in the eye you have some decision’s to make, accept it, curl up and let it happen, accept it may happen but reject the idea that it will stop you living whatever life you can at the best quality you can, not considering any concept that the inevitable will arrive. I remain optimistic, determined and grounded, I understood the alternatives as they were presented, and I handed over to the transplant team every decision that needed to be made. They kept me informed and I had the final say, but if they recommended something it was done. I found that was the best way to cope with it, I didn’t need to worry about my future because they did. I could concentrate on keeping as fit as possible and resting.
Pauline asked me if I was tired and weak, I replied, I am not tried, I just don’t feel strong but I know that it will come back”.
I had roast beef for dinner, yellow jelly and ice-cream, it all disappeared apart from a few well prepared hospital carrots, seems they can’t cook carrots for me. Pauline and I just chilled and talked about all sorts of things, I told her I may never be quite again. We were both overwhelmed by the whole situation and the speed of my recovery. Normally at this time of the year we were planning the summer activities, which swim event we would do, where else could we go for some adventure swimming. It was a year ago the we had returned from the UK after Pauline’s successful 4 Marathons, 4 countries in 4 weeks including swimming the length of Lake Windermere. And here again we were now contemplating a future that did not exist a mere week ago.
I wanted to give Pauline and Leeanna a special holiday at the end of it, but have been subsequently been told I can’t travel to the Pacific Islands for some years, so we will explore some alternatives and do that one day.
I was in a room looking over at the School of Medicine and bus stop, so I could see folk going about their day and it was nice to be able to reflect that I would be doing that again soon.
Day 7
First order of the day was giving blood, I still had a tap in so that they didn’t need to use a needle, then weighed. I weighed in at 93kg before the transplant, I had gained a few Kgs in the 2 weeks before due to fluid retention again, so my real weight should have been around 90kg, I was 101kg today due to fluid retention after the operation. My feet and hands were podgy and it was hard to bend the fingers, toes and ankles. I effectively stood by myself and used the frame to get in the weight chair without much assistance. Then into the big chair. So happy with the start of the day.
I suddenly understood that I am not sick anymore, rather I am well and in rehab now learning to live life as a well person. After the lead up this came as somewhat a shock and revelation as to how sick I had actually got and a letting go of the concern I had caused my wife, family and friends. there were those who had been close to me in the past that i did not tell as I did not want to burden them, They were busy and had enough to worry about.
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I received a medication diary to record my medication and ensure I took it. The catheter I peed through was removed and I had to now worry about looking after myself from that perspective, one of the neck lines was also removed and I had my first shower assisted by the nurse. It felt wonderful and I felt one more step back to normal. I had significant damage to the skin due to the process and bruises starting to develop all over.
I had a phone chat with an old colleague, a current colleague and my boss, and received through mail a card from my father’s wife’s sister, so nice. I rang her to thank her and had a wee chat. I walked 1.5 times round the ward in a smaller walking from that I had started on. No dizziness or any issues, just a little balance problem due the balloon feet. It felt like I was walking in rubber balls connected to my feet, very spongy and it effected my balance, I wasn’t sure where my feet were.
I managed to get myself to the bathroom with the small walker and have a shave and use the toilet. Apparently my progress was now being talked about by the staff as amazing and ahead of schedule. We had some great news about Pauline’s job. She had started work on the day before we got the call so worked in a brand new job for 2 days. She had told them on appointment that I had some heart issues but not that I needed a transplant, so she then had to explain the situation and that she now needed to care for me for a while, they have granted her Leave without pay for a period that should see her being able to return. Lovely outcome.
Another swimming buddy, Todd came in to see me and spent time talking about all sorts of things, my sister also visited which was a regular visit. It was a pleasant time a great day and I could feel I was making progress toward wellness.
Day 8
I did not sleep very well, partly response to the drugs and being wired, partly to just being overwhelmed by what had happened, my mind couldn't turn off, so asked for a sleeping pill to help, I was given half a one and went to sleep about 1 am and woke at 5:30 am, just before they came to get today's bloods.
Peter (Cardiologist) and Helen (Transplant Coordinator) came round with the plan. An Echo-cardiogram sometime when it can be arranged to see how the new heart is working, go the Hearty Towers for a visit tomorrow and first Biopsy the following day with the removal of the temporary pacemaker wires. Then discharged after the compulsory 6 hour observation post the procedures. So excited.
Showered by myself with no assistance, dressed in my own clothes, and walked a lap of the ward with a nurse present for support, she walked the frame for about 15 metres and I walked with any aid, then I did another half lap unassisted using the frame for balance support.
I was a bit later taken to the Gym for a wee work out. 5 minutes on the bike at 60 rpm, felt amazing and so good. I then did 20 sit to stands using my arms to push of, 20 arm curls with 1kg weights and 20 leg raises holding on the toes for 2 seconds. The Physio’s were surprised at the progress, as I guess I was. I am not sure what expectation I had but thought it would be a longer and slower recovery given my age and the experience others have. But again each journey is different, my lifelong fitness and particularly as I kept as fit as I could while getting sicker made a huge difference. Hint here is if you are going to get sick make sure you are fit beforehand.
Body is working OK kidneys starting to function again, weight is down to 99.8kg. The rest of the day I relaxed and had all the remaining lines and tubes removed, I was no longer attached to anything, even the monitoring equipment for heart beat and blood pressure etc. were taken away. I lay there at that point thinking how strange it was. My IED had been removed during surgery, my PICC line also, replaced by some 11 connections, now there was none, there was no alarms I could set off. I was completely on my own for the first time since about April and I had an insecure feeling of helplessness. I had to remind myself I was well, likely the most well member of my family at that point. It took some time to work through it not having a comforter on board and guess it was like withdrawing the dummy from a child.
Day 9
Woke and did same routine as the day before, however I did wake early and wondering what the chance of having a transplant was. So pulled out the computer and pulled all sorts of population information together including blood types weights, height, gender, analysing it to find the chance of a donor becoming available which turned out at 0.77%. Glad I didn’t know that before, but was very therapeutic for me. The randomness of a donor/recipient match means some folk wait a very short time others much longer into years. Again I can only think of love when I think of the donor and his/her family for giving me the chance at a life I did not think I would have again.
I went for my wee walk around the Ward, it was shift change over for the staff. As I went past the corridor they arrived through, a Senior Nurse walked past me and looked. After she had put her gear away she chased me down and asked “What are doing.” my response “I am walking why is my posture wrong” I had the frame and had just before pushed it ahead of and walked to it. “Where did you get the frame from because you clearly do not need it?” she asked. I said “The Physio set it up and gave it me” - “Oh really, which one?” I told her their name, and I then said “I had a heart transplant 9 days ago and need it to help balance as my feet are so swelled that I feel I am walking on rubber balls”. She look at me unbelieving and asked to see my bracelet. She didn’t believe me and trotted off to check, not to be seen again. I went back to my room feeling a little elated and very much like being back at school after playing a prank on the teacher.
We had been told we would be going to be discharged to Hearty Towers the next day. Both Pauline and I were very excited, I had my first biopsy and the removal of temporary pacemaker wires the next day and then we would relocate, it threw us into a little tis-was as we thought we were going on Monday, but I was moving ahead of the plan quicker than expected, so they could clear the bed for the weekend.
Today we went to Hearty Towers for a visit and lunch. It was very exciting to be able to walk to the car, albeit I still used the walker for balance, and drive in a taxi from the hospital to Greenlane. There were 2 lung and 1 heart transplant patients there that we knew or at least had met before. One lived not far from us and we had seen them going for their walks to try to keep fit pushing the trolley containing her oxygen along. They were doing great and one was going home the same weekend and we were going into that room.
It was a strange feeling being one of them, rather than still on the list, wonderful, euphoric and very emotional for me. I can’t really find the words to explain, but do think it was the same feeling I had when I finished the Ironman Triathlon and first 10 km swim times 100. I was now well and on the road to recovery, I could plan with Pauline a future again, plot adventures and look forward.
We went back to hospital in the afternoon and I had a cardio-echo, scan of the heart, the same as they do a scan for babies. I was able to see my heart pumping, I was in what they call atrial fibrillation (AF) which is Palpitations (feeling your heartbeat in your chest) and an irregular heartbeat. I thought it was nice feeling it pumping. I could not believe the different activity of this compared to my “old” heart, no wonder I wasn’t getting any blood through the system.
I was seen immediately after by the cardiologist, who prescribed some new drugs, two more pills to pop. One I was able to take immediately and it settled down. Due to the way the day had gone I had to wait until 11:00 pm to go to sleep due to the diuretic I was given. Could not wait for tomorrow to arrive.
Day 10
I was not allowed breakfast due to the procedure, the biopsy. I was taken to the same operating theatre that I had the stent put in when I had my heart attack. The procedure was similar, except they go through neck. They use some scissor like instrument with a little nipper on the end that takes a tiny bit of the heart tissue. This is analysed to see if there any sign of rejection. The procedure only seemed to take 5 minutes, and the preparation was longer, they do it with a local anesthetic only, and you can’t feel it, I was wondering when it would start when the surgeon said it was done and he was taking the instrument out. They removed the temporary wires which cause a little discomfort, but all in all it was OK. He confirmed I was AF again.
I was returned to the room and had some breakfast, then an orderly turned up to take me for an x-ray. I was wheeled away on the bed and parked up in a bay. I was waiting and one of my nurses arrive and said “I finally found you”. The orderly had not told them they were taking me. So they gave me my drugs as it was that time of day for the cocktail. I had the X-ray and was returned to the room and my breakfast had been taken away. I asked the nurse for something and got a single serve of yogurt.
I asked what time they would discharge me and to my dismay they said I had to stay for 24 hours as it is ward protocol and that no matter what the cardiologist said about a 6 hour observation period that didn’t apply to this ward. So I could not go the Hearty Towers until tomorrow. Pauline was devastated and she had all our gear in the car and was ready to go.
Then blow me over an orderly arrives to take me for another x-ray. I said this time I will walk so off we go, as we go out of the ward he asks to see my band to make sure I am the right person. Then says I am in the wrong ward and should be in ward 48 ICU not 42 HDU. I told him I was in 42 cos that is where he found me. He then told the nurse he could not take me until I had the right information on the band as I might get lost!
My boss arrived after I returned with a lovely bunch of flowers and we had a nice chat, I think she was surprised to see me in such good shape. I gave her an indication that I may well be able to return to work some-time in January.
One of the transplant co-ordinators arrived with the key to Hearty Towers and had discussion with the ward, and he became somewhat frustrate by the process as well. It meant he would have to come in tomorrow to Hearty Towers.
I was no longer was attached to anything, nothing poking out and the wounds all dressed, with little pain being managed with Panadol only. I did not need “nursing” for the last 2.5 days apart from manual monitoring of Blood Pressure and providing blood for countless tests. The visits from the nurse had reduced from every hour to 2 hours to 4 hours. I had no tubes with taps on so the only way to draw bold was back to the needle, this hadn’t happened for about 3 months now as I had a tap they turned to get it out of the PICC line. So the bruising start all over again each time blood was taken. The worst of it was when they couldn't get the needle into the vein or they moved, they were “damaged” as a result of a lack of blood flow, and are slowly recovering.
My recovery was well ahead of schedule and expectations, the nurses didn’t need to look after me and the protocols they applied become a source of frustration. On that night my blood pressure rose, the nurse was very concerned and went to consult the ward doctor, I told the nurse I was a little grumpy about not be able to discharged because of some unwritten protocol no-one could show me, and had become a standard practice even though the “policy” had changed. She told me to stop worrying and I was overwhelmed and to stop thinking about the transplant. I again told her I was grumpy because of the impact this had on Pauline, she finally had some certainty, and she had the car packed and was more than ready to start the next phase of our new life, only to have it changed at the last minute.
The ward doctor became concerned at the blood pressure, I asked if their blood pressure rose when they got rather grumpy, as it had gone up a bit again by this stage. I asked for a sleeping pill and they wouldn’t give me one. They then contacted the cardiologist, who when I had fallen and broken my rib sent a message to put socks and keep warm, suggested I might be grumpy and to give me a sleeping pill and check in the morning after I woke, and not wake me to take my blod pressure. Well guess what, blood pressure was back to normal in the morning and we were off to Hearty Towers. My cardiologist visited in the morning and was satisfied all was well, and I said “wow I am like a normal person”. He said you are normal again you just need to recover and avoid stress for a while. We had a laugh about it, while the nursing staff prepared to discharge me.
Eventually about 11:00 am I was discharged, I got a fantastic guide to the drugs I had been prescribed, it describes the effects of each of the rugs and what role it played. Pauline had picked up the drugs the day before and they filled a couple of shopping bags, they were daunting. We drive out of the
hospital and I lost it a little becoming very emotional and crying, sobbing with this big smile on my face. I couldn't believe what had happened and had now a second chance at life I find it difficult to explain the feelings I had, apart from they were relief, gratified, thankful to the donor family and love for Pauline staying with me and helping me cope and get through this.
As it turns out I am one of the fastest to be discharged to Hearty Towers, my Step-daughter, called me an "over achiever", I was just happy to be out of hospital feeling well and full of belief. So many of us take life for granted, that we are bullet proof and can do anything we set our mind too. Sometimes that get interrupted by grief or illness, sometimes by distractions and others coming in and out of our lives, This experience has had all of that and more.
The staff Auckland hospital were fantastic and I have to say that if you are genuinely very ill the health system is amazing an works well, that may not be so where the illness is not as grave as myself and others like me experience but if you are in this group you are exceptionally well looked after and taken care of by the best.
Pauline has been my rock, my friend and support person, she has done a wonderful job for me, when we said "in sickness and health" she certainly meant that Thank you so much.
We are into a new life
were relief, gratified, thankful to the donor family and love for Pauline staying with me and helping me cope and get through this.
We were into a new life