My first swim and more!!!

This blog was supposed to be about my return to work and swimming, how wonderful it has been and we have moved on to another phase of the new normal life, I began writing this blog as I went along so I will leave what I have written and not change it but rather add to it. Again my heartfelt thoughts go to the donor family that have suffered their own grief but given me, Pauline, my family, not just a reprieve but a second chance.

I have started swimming again, what a thrill. When one gets to the point in life where you don’t expect life to continue and are then given a second chance such as I have been, doing things for the first time again is just like doing things for the first time ever.

The things you get to do that were impossible before. I really do appreciate the folk who have had congenital heart issues, where all their life they have been either unable to or had reduced ability to participant in all the things I have in my life.

1st March was the day designated to first swim. Each of the cardiologists and Co-ordinators had a different view on when I could go back in the water, they ranged from 6 months to 1 year and maybe never. I took the advice of 6 months; there is consideration of the risk factors. If I had complications and issues I would have waited, but I haven’t. I have been going to the gym and riding my bike. I am pretty fit considering, but I still have some way to go.

I have returned to work and will be full time from 12th March 2018, that is going well and I am not feeling tried and as I mentioned in my last blog my heart rate actually goes down whilst I am mediating.

My first swim was set for Thursday 1st March. We have had

an amazing summer with very warm temperatures and little

wind, until mid-February when the tropical storms arrived and things began to get windy. I went to Kohimarama for the Thursday evening swim where Pauline normally does a 2 km event, I had done 100 in a row prior to getting too sick to continue in 2016. The nor-easterly was up and the course had to be changed to the alternative. It was rough and not the best conditions for a novice to enter the water.

I was somewhat nervous and anxious, but equally excited and confident. I put my wetsuit on and didn’t say anything to anyone about it being my first, but they all knew it was, and wished me luck and welcomed me back, a number thought I was going to race. I guess that is because of my reputation of being determined, but I wasn’t there to race. My nervousness and anxiety came from not knowing what would happen when I went prone and started exercising. Everything I had done to date had been vertical, except some exercises I had introduced in the last week. I know when I get up from lying or sitting down it takes a wee while to adjust. I have been unable to get information on other heart recipients' experience of swimming, rather than paddling, surfing and snorkeling.

So on a rather rough and uninviting Thursday evening I entered the water. I didn’t want anyone to come with me for two reasons :the first was that I didn’t want to have any pressure on me, the second I wanted to experience it for myself and by myself. I went in and put my goggles on for the first time in over a year on 18th February 2017 at Blue Lake for a 500 meter event. I launched into the water without delay, and it felt wonderful, the warm water enclosed me, took me and held me, again liberated me. I started turning my arms, I found my stroke and almost effortlessly moved forward, it was like I had never been away.

When one first enters the open water with no lane to follow, no wall to turn on, nothing to measure how far you have been, or how long you have been going for, for the first time ever you have nothing to register, so most people stop after about a minute and expect to have gone much further. I knew that, so even though I was tempted to stop I just kept going. It was hard to sight, my goggles didn’t fit as snug as I remember and water leaked in, but I felt wonderful and free, I was no longer sick, I was no longer recovering.

I have a tow float along with me, (they help you been seen in the water, you can store stuff in them like your shoes, towel, phone and keys etc, you can hold on to them and use them as floatation devices in case you need it) the reason I took it was so that Pauline could easily see me, and I could hold onto it if something happened or I got tired quickly. I had to stop because it slipped off me and I had to retrieve it, then reattach it. I had been asked how far I was going for, my reply was I don't know, maybe Rangi and back (the island you can see in the background), maybe the yellow buoys and back, maybe the white buoys and back, maybe until I can't stand and back. I didn't know nor had no expectations.

Once I got it back on I turned back and swam in, I did 275 meters in my first dip back. I was so pleased, I felt great, I did struggle to stand when I finished, not because of anything physical, but because my tow float slipped off halfway down my legs and I couldn’t walk. I had done it, my muscles remembered how to swim, they needed a bit of work, there was no stamina there, there was no endurance, but the basics were there, life was finally nearly complete again, only 3 short term goals to achieve now.

The next day I went to the pool at Glen Innes, where Pauline and I used to swim together for hours and went to squad. It was also where I was working at the time of my heart attack. I wasn’t working that day as I was still part time back at work. That day I did 15 lengths or 533 meters. I did stop and did them as 100 sets. I again felt good and was doing 100 metres in just over

2 minutes, which was great, considering I used to swim at about 2 minute per 100, cruising in the open water or 3 kilometres per hour. The next day I went back and did another 667 metres.

On Sunday Pauline didn’t go to the harbour for a swim, it was rough, so we were able to go together for the first time since October 2016 when I had a

cardiac arrest swimming with her in the pool. It was exciting and so nice, as she said she had her swimming buddy back. We swam together me behind, then her behind for some, touching toes, she used to get very grumpy at me when I used to do that but just smiled this time. I did 1,200 metres, in sets of 100 and 200’s. Muscles feeling good and not getting tired, heart rate below 125 at all times, hold steady. Not light headed or dizzy when I stood.

So that was the second goal achieved, only 2 to go then life would be a new “normal” and much would be back to where I was before my heart attack.

I went to work on Monday morning, and enjoyed a mediation, and did some other admin stuff, on the way home I went to Parnell Pool to meet Pauline for a swim before going home, the pool is on the bus route so perfect. It is outside and salt water and a very nice temperature in the low 20’s, similar to the sea. It is also 60 metres long. So on with the sunscreen, into the togs and off I go. I saw and had a chat with coach and freak swimmer, Brent Foster. Jumped in and off I went, I had adjusted the goggles so they fitted correctly now and no leaks or fogging. I hit my hand on a lane rope and broke the skin and was bleeding, so got out, to stop the bleeding and cover the broken skin, to protect it. Pauline arrived and we got in together, by this time I was doing 6 lengths non stop or 360 metres. I completed 1,320 metres that day, and sat in the spa waiting for Pauline to finish her swim.

It was so nice, going to work, meeting up after work doing some exercise and going home together, what more could one want in life.

On Tuesday I had to do some scheduled blood tests to check levels etc, my white and red blood cells had been going down a little and I was on iron for a while. My medication had been adjusted over time to deal with this. I had decided not to swim as I had for 5 days in a row, so this night we would get on the bikes and do a session in the garage together. It was becoming like old times again. Two goals left, do an event and return to work full time, the first would be on Sunday the second next week would be my first full week.

I set off to work, swim gear in a bag, to stop off at Parnell Pool again on the way home. At work I got a call from the transplant team, telling me my white blood cells had dropped again. Oh dear I thought. I had better not swim tonight. I didn’t swim again the rest of the week, we planned to go away for the weekend to Rotorua to do an event at Lake Okataina, Pauline doing 6 km and me doing 800 metres.

On Friday my last day off before returning to full time next week, I went to the gym in the morning for a great workout of 90 minutes, came home and did some swimming club stuff, some home administration, had lunch and went to go shopping and pick up the motor home and prepare it for the weekend. I couldn’t find the keys anywhere!

The previous week I had gone to the doctors because I had a blocked sinus and got some spray, My left ear seemed a bit dull, like it was blocked. I used it and it got better by Thursday and cleared. I got myself into a right fluster trying to find the keys, I always put them in the same place, but they weren’t there. I wasted the whole afternoon, looking into everything and everywhere. When Pauline came home I was frozen, I rang the providers to see if there was another set but there wasn’t. I went to where we stored the motor home, and looked to see if I had left it there in the door. They weren't there.

On the way home I remembered the last time I had used them I had gone to pick up the bike pump. I came home looked for the pump and there they were, with the pump. So we packed up, had dinner and about 9pm headed off into the darkness. I had a shower immediately before we went. We drove to a place called Bob’s Landing next to the top end of Lake Karapiro.

My right ear began to get sore on the way, I took a couple of pain killers and thought it would be all good. We went to bed, it was late nearly midnight, Pauline was hot and opened the window and we crawled under the covers. I went to sleep. Woke a little later feeling cold and shaking a little, got up went the toilet and felt unsteady on my feet. Went back to bed and got worse, broke into a sweat and continued to shiver, had an awful headache.

I guess I dozed on and off and Pauline woke me about 9ish in the morning. I felt really bad, had a terrible headache, felt like being sick, was unsteady and generally felt like crap.

We had some breakfast to try and get something in me, had my medication and decided to go to hospital, so we headed off to Rotorua Hospital about 70 km away. When we got there we parked and Pauline stayed in the van and I went in. They were great, I explained the situation and they whisked me away to a consultation room away from the general public. They were on the case very quickly, in fact I was treated a bit like a VIP. They first diagnosed I had an earache and a fever as a result. My temperature ranged between 37 and 38.5c (98.6 / 101.3f), it is usually 36 (96.8). I was hooked up to a drip to get fluid into me as I was dehydrated as well.

We thought they would give me some antibiotic and send me on my way. They took blood and I suggested to Pauline she might come in and bring our kindles with her, we might be spending the day here. As time progressed they put a line in me, with a double line on, I knew I was in for it then, they had decided to give me antibiotic by IV, I thought my days of being connected to things was over, but no.

The day dragged on, doctors arrived- they were in consultation with the transplant team in Auckland, together they came up with a plan, that included me staying the night. Blood test came back and the white cell count was very low. This results in a condition called “Neutropenia”. The norm reading is above 1.5, mine was 0.8, severe neutropenia occurs below .5. My medication was changed again and the Cellcept, (mycophenolate mofetil or mmf) was stopped altogether as it was the likely cause of the drop. This is a delicate balance because the Cellcept is critical in managing rejection.

I was given fluids and antibiotic by IV, moved to another isolated location for the night. The next morning after sleeping well, however, I had the shakes and fever. Pauline slept in the motor home over night in the carpark. I tried to get her to go do the swim on Sunday but she wanted to stay close. During the morning the ENT specialist turned up and had a look into my ear. Said it was infected and asked if I had been swimming recently. Yep I had. He took me to his room and carried out a procedure to clean it out, and place a wick (described as a like tampon) into it that would open the swollen canal and let the antibiotic drugs get in. That would be there until Wednesday. They did more blood tests and the neutrophils reading now didn’t register, it was a little serious.

I was moved to the medical ward, mask put on and placed into a single room away from others again.

They were considering moving me to Auckland Hospital, as they didn’t really have any experience in dealing with this kind of thing. The Auckland team, as I found out were happy for them to continue to treat me at that point. We continued during the day, Pauline finally went for a swim, the pool was across the road. We both read a book, my kindle went flat, we passed the time, I was hooked up to an IV they do their observations, my heart rate had returned to normal, my temperature had come back to the mid 35 range. I felt better if not a bit battered.

The next morning the doctors came round and decided I could go home that day, I had to contact the transplant team the next day. During the day some trainee nurses came by to talk with me and my experience. They had been vetted for sickness. Generally smaller hospitals don’t get to treat heart transplant folk as we are rare. Finally later in the afternoon I was “released” and headed home. We worked out on the way that we had lost my son’s birthday card, my wallet and the garage door opener somewhere, déjà vu. End the weekend the way we started it.

I didn’t have to turn up to work later on the Tuesday, so had a lye in, then got a call from the Transplant Team to go in and see them. I went to Greenlane and saw the Cardiologist who had dealt with Rotorua over the weekend, we went through the issues and he checked the results. Called Rotorua and talked with the doctor and thanked her. He decided I should do blood tests again and suggested I will be referred to the hospital for a bone marrow biopsy if there was no improvement soon as a result of stopping the Cellcept. We talked through the precautions I needed to take in this situation. No contact with sick people, limited contact with anyone else, avoid anywhere where there are crowds and wear a mask when possible exposure is a risk. So a call to work, no return to full time yet.

Two short term goals to go!!! I will not get to do an openwater swim event this summer so will have to wait until October or November to do that, I hope t do a few bike rides over winter, and of course return to work fulltime in the next 2 weeks.

This experience shows how fragile this journey is, they say a transplant is not a cure, guess they are right. I have experienced swimmers ear before, I carry the bacteria that causes it when conditions are right, which is when the ear is wet, left wet, not dried, or when water is stuck in the ear. So I guess with the swims I did and the shower I had before I left was enough to set it off. So next time we have to do some things different. The fact that my immune system is so low that I could not fight it meant that it would happen.

So I continue to have blood tests and monitor the level of white blood cells, the ear is almost better. So next objective is to go back to work and start back on the bike and in the gym (when my system is back working). Today my Neutrophils (white cell count) got back to 0.99, so out of the critical range.

I have also started working on the letter to my donor family and propose to send that in the coming weeks.

MXLLS

Goggles our cat has not settled at our new place and each time he is out at night runs back to the old house, and we take up to a week to get him back, so anyone with ideas please let me know how to fix that.