9 Months Along

"He had that strange feeling in the pit of his stomach, like when you're swimming and you want to put your feet down on something solid, but the water's deeper than you think and there's nothing there”

When I was little apparently I began to walk at about 9-11 months old, faster than most, not too long after I figured out how to get outside when no one was looking, through the open window to my bedroom, slide out and wander off to explore the world.

It has been 9 months since I received the wonderful gift of life, and again I am exploring this wonderful world. I went to a concert by Jason Bonham, (son of John Bonham the Led Zeppelin Drummer). Led Zeppelin released their first album in 1969. I had just started high school, had broken my nose in a bike accident, and heard this music played on the radio. Nothing like it had been heard before, there was a lot of experimental music going on back then with rock becoming “heavy”, this was different, it was blues based rock. A new direction, I was taken.

It was odd being in a hall with people mostly my age, in their 60’s, who had grown up with this music, mostly whose parents disliked it, mine did, even my brother and sisters thought it a bit odd, it wasn’t Vera Lynn or Howard Morrison. It was all new and different. Whilst I cannot hear it again for the first time, I did experience it again, as I did in 1972 when led Zeppelin came to Auckland, I have the recording of that concert safely tucked away and can relive those moments of joy as a youngster without a care in the world.

The last month or so has been again a roller coaster ride. Of course in March I was admitted to Rotorua Hospital for an ear infection on the way to do my first Open Water Swim. That now has to wait until next summer. My white blood cells went below the critical line and my immune system stopped working. Drugs were adjusted, Mycophenolate Mofetil (CellCept) (MMF) was stopped. My blood cells recovered.

On 23rd May I had my regular Clinic appointment with a Cardiograph and Biopsy. That all went well, no issues with the cardiograph, bloods were OK, a wee issue with the kidney still and will be referred to the Kidney folk, hopefully it is slow in recovery. Drugs were adjusted and sent on my way with the all good report. The following day nothing, the next day being Friday I got a call to tell me that I was in

Stage 2 rejection.

Unfortunately, a new heart is foreign and the immune system treats it the same as it would a bacteria or virus. Rejection is the body's attempt to protect you by attacking a foreign protein that has entered your body. Episodes of rejection of transplanted organ(s) occur at random times following surgery, and are most frequent within the first few weeks or months after surgery. There is nothing other than taking the prescribed medications that one can do to prevent them. Treatment for rejection is determined by severity and the time interval since transplantation. Others who have received transplant around the same time have also experienced this.

I was placed on a very high dose of prednisone, a steroid, and will go back for another biopsy on June 19th.

Grading rejection

The pathologist, the medical Doctor who reviews the tissue slide for the diagnosis of rejection rates the presence and severity of rejection based in the International Society and Heart Lung Transplant (ISHLT) scale.

Acute Cellular Rejection (ACR)

0 = No evidence of rejection (NER)

1R = mild rejection

2R = moderate rejection

3R = Severe rejection.

There are no symptoms for rejection at this level, there is nothing to tell you that it is happening. They tell us that it is not a worry, that it is treatable. I understand that, however when you have been fighting to stay alive and now have a battle raging within your body to reject the very thing that keeps you alive creates certain feelings, for me anyway. I can’t remember first learning to walk, maybe I had not learnt about fear then, I cannot remember the first time I fell over, I can remember the first time that I do remember and the first time I fell out of a tree, both scary and exciting.

I guess being afraid or scared is simply not knowing what is about to happen, I wasn’t scared about the transplant, I was excited, I trusted the process, now I understand rejection better than just the theory we were told about, I now understand what is happening within and look forward to a clear result. So again I am experiencing things for the first time, learning and growing, like walking again like hearing music for the first time.

We went to my Great-Nephew’s first birthday up North, spent the weekend with my sister, Heather, Vinny (Vincent) is her son’s son (Haydn). Haydn was the second baby I looked after when he was crawling, my son being the first. Addison, my niece’s first baby was there, she turned 1 a few weeks earlier, along with Aria, my other sister’s Grand-daughter 3 months old. We had a lovely time with family. For me the delight of having small children about, exploring, not a care about getting food all over them, falling over as they tried to stand and walk, seeing new life developing was a real delight. These are the things that life is really about, sharing small important moments, looking to the future with hope and delight.

Pauline and I went for a bike ride in the late afternoon on one of the New Zealand’s Great Rides, the Twin Coast Cycle Trail. And did the Okaihau – Kaikohoe section which is 14 km one way, we went and back for a total of 28 km. It was a

great experience and our first adventure into trail riding. We have invested in another Ebike, after Pauline winning one in the Across the Bridge ride in February. Riding the Ebike allows me to do things I couldn’t otherwise do, such as this. It was a lovely experience and one we will repeat I am sure many times on our adventures. We ride along with the Ebike on either no or low power, I use it to get up the hills as I build strength.

I do miss swimming, the feeling the water provides the freedom of weight, the quietness of only water splashing, the coolness against the body, the power that you can feel generated from your stroke, or the calmness of just plodding along at a causal pace. I do miss those feelings, same as when I used to run, but I can’t do either right now. I will swim again when my body settles down, I most likely will never run again and certainly never like I did. Due to my knees, they are in bad shape and trouble me even when walking. I got the process started to have a knee replacement prior to going into heart failure, but had to stop.

I asked my doctors about it during the last 6 months of recovery, they have said I have to wait at least 12 months, so I have started the process again and have just seen the specialists. They x-rayed my knees and the person doing

them said “Oh my god” when she was checking the x-ray and said “you will be at the top of the list with those”. That was confirmed by the doctors that they are shot. So I have been deferred until October to see how I am responding, and they had checked out my kidney issue, so that I have the best chance of success at a knee replacement. Hopefully the kidney issue is a slow recovery rather than permanent irreversible kidney damage due to the heart failure.

Following our weekend away and waking up on Monday morning to go to the hospital for the knee appointment I developed a cold, runny nose, headache & temperature. I really didn’t need that, whilst I was at the hospital I went over to Hearty Towers, (Heart Transplant Centre) and checked in with the co-ordinators. They told me to go home wrap up, stay warm and drink lots of fluid. I have always worked through a cold, taken pills and carried on. I did learn through the transplant process to do as I was told. So home I went, and low and behold 2 days later am starting to feel good again, the temperature has gone down and should be OK to go “slowly” again. I have not been on the bike as tempted as I am. Behave myself I will.

So now I am looking forward to the next biopsy to get clearance on the rejection and seeing the white blood cells settle down to normal again. We are looking forward to a series of bike rides in August and another one of Mountain Bike events where we will use our Ebikes, maybe the third one we may actually race, once we learn what it is about, well most likely I will have race to wont I.

Today 19th June I went for my biopsy and clinic again, in the next few days I will get the results of that and hopefuly clear me of rejection, they expressed no concern about my progress, my kidneys are a still a concern. The issue for me is the creatinine level, normal range is 45 to 90 umol/L, today mine is 175, it was over 200 pre and post-transplant. So it has improved but has now stalled. Creatinine is a by-product that muscles make. Kidneys get rid of it through urine. If the creatinine levels are high this is a sign that the kidneys are damaged. Mine are clearly damaged so now we are on a new journey to find out what that is all about, is it serious or can it be managed? Some the drugs I am on are difficult for the kidneys to process so maybe they will change over time to help them out. Later this month we will know more.

I went to watch my Grandchildren play their sport on Saturday, Tyra playing Netball and Marko playing ripper rugby. It was nice and pleasant way to spend a Saturday morning unfortunately on the way back to the car I twisted my ankle and crashed to the ground. I think the state of my knee assisted the crash, I hit the ground with my left shoulder, hurt

my ankle and was a little stunned, folk rushed over, a burly security guard helped me up and we checked me out, I seemed fine. Pauline asked me to hang some towels on the clothes line on Sunday afternoon and I could not raise my left are at all. So off we went to the hospital, to get it checked out, they were wonderful, the emergency room was full with folk coughing and sneezing etc, they gave me a consultation room and in comparison dealt with me quickly so we were out in less than 4 hours after being x-rayed poked and prodded. They said I had most likely strained it or torn a muscle, and should settle in a few days and see how it is.

That morning I went for a wonderful bike ride. Part of the route I took include the last 30km of the Ironman bike course I did in 1992. It include a 1km grade 5 (Steep) hill and going up it brought the memories of that day back in sharp focus. I was in much better condition back then having swum for

3.8km and biked 150km to that point and then did a 42km marathon run after the bike. Going up that hill was something that has established I can do whatever I can imagine again. I will have to be careful and consider the risks of the things I want to do. I have to be patient, but I can see that what I dream of doing may be achievable. I am not ready to verbalise what that thing is yet, It may change, it may develop into something else over time, but it will happen when I am ready and when I have stabilized the bumps.

But first it is time to spend some time helping Pauline achieve some of what she dreams of, that has been put on hold during this time, since her wonderful Lake Windermere achievement. It is now time to realize both her dreams and goals. I have written a program for her to achieve the next step in that journey for next summer, so looking forward to that.

Fear can be good when you're out at night in a strange place or when you hear strange noises outside when you are in bed, but it's not good when you have a goal and want to achieve something or anything and you're fearful of complications. We often get imprisoned by our fears, those of us who have had success has fallen short or even failed before.

e fearful of complications. We often get imprisoned by our fears, those of us who has had success has fallen short or even failed before.