Over the past few weeks, I have received calls and texts asking what ever happened to the blog. Good Question!! The answer really is that the whole transplant, donation from Niall, Moss repaired and ready to conquer story has come to a bit of an abrupt and grinding halt.
The key method of propulsion of the whole roller coaster was Niall and the trials and tribulations of achieving the required weight and completing all the necessary tests while commuting up and down to Norway. We had arrived at the final hurdle in March when Niall was going to be in Ireland for Jill’s wedding. The plan was to get the final test done and then wait for the approvals and proposed date for transplant to arrive.
Although he did the test the day before the wedding, the expected approvals and transplant date never arrived. Instead I was hanging out in Delish (my favorite coffee shop and home of some witty banter!) with Rose. I looked at the phone and there was a few missed calls from the Ginger Badger aka Niall!! The thing is with Niall is that he will ring you until you answer the bloody thing. He wears into you into a telecommunication submission.
I answered the next time it rang. Niall was straight to the point, “Spoke with the surgeon this morning, He will not put me forward for the transplant”. Of course my initial reaction was “Why not?” Niall began to give me the blow by blow account of what the surgeon had said. The final blood test had shown that Niall may or may not encounter kidney problems himself at some stage in later life. The donation would leave him exposed and in a dangerous position down the line. Over the past year, I have learned the requirements and gained the understanding of what the mechanics are of a transplant and the key requirements are for a successful outcome. Niall, although he had been a match and did everything that he could to make this a success, his genetic makeup had bowled him an off spinner and knocked over his successful outcome wicket.
I remember just putting down the phone and carried on sipping my latte. In my world, vanilla lattes are the mind’s petrol. I knew there is no time for a few laps of the backstroke in the pool of disappointment. Kidney failure and the ongoing transplant process is a battle and a lengthy one at that. A battle that Niall had done the hard yards to cut short for me. I know in future years, Magnus, my little Norwegian nephew may ask if his daddy was any good at rugby, I can tell him for sure that his father was shocking but he has proven that he is a hard, tough man in other ways when it counts.
March was also the time that Freda, my dialysis nurse from day 1, suggested we look at changing my dialysis method, basically changing from 4 to 5 separate exchanges a day (CAPD) to using a machine for 9 hours overnight (APD) To be fair, it needed to happen, my clearance numbers i.e the level of filtration my blood was getting, wasn’t up to scratch. I was feeling worse and worse by the week and by the time Jill’s wedding had arrived I was pretty second hand, feeling tired constantly and not eating that much. It was a sure sign I wasn’t getting enough dialysis and primary reason for my 11pm departure to the cot on the night of the wedding.
I had a little concern about the flexibility level I would have with this machine. It is the size of a medium sized Samsonite case and each night time session requires 17.5 litres of dialysis fluid so a few nights anywhere would pose a bulky problem. Saying that I had similar problems with old method but got cute with leaving boxes of fluids in different places so I was never stuck, a real squirrel and nut plan of attack but this new dialysis way needs a lot more nuts!!!As regards the way it works, it just does the same job as CAPD but the machine pumps in fluid and drains you several times over a 9 hour period overnight. While you snooze, it cleans u out.
The last 6 months since then have been pretty uneventful really, my golf game is the now the best it’s ever been, dialysis is going well, I even got the hang of travelling abroad with the APD machine. You should see the face on cabin crew, check in staff and security personnel as you rock up with what looks like an outboard motor on wheels. You know it strikes fear into them as it’s something they don’t see every day and want you to check it in or put in the hold. Thankfully all airlines allow it on board with no charge but they don’t seem to tell the staff on the frontline. Not to panic, when the friendly airline staff stand their ground and refuse to believe that such an item ever graced a 737 overhead bin before, I have a secret weapon.
I just look them in the eye before delivering with 007 like charm the line “this machine keeps me alive, without it I will die”! This slightly over dramatized fact normally causes the biggest reversing of the truck by the boarding staff you would ever see!!!
It is the start of 2014 and the start of what will hopefully be the transplant year. In late December, I got a good old fashioned paper mail from the nice people in the transplant unit in Beaumont. They were asking how I was doing with the weight loss. I got on the phone the next day and gave them the good news.
Me: So yeah, I have managed to get down to 104kgs and I am still going.
Them: That’s great news Niall. How did you do it?
Me: Oh you know the usual. Didn’t eat a lot and threw up loads.
Me: Ah no, I’ve just changed my diet a bit, even eating a bit more in some cases and training a lot more.
They were extremely upbeat about the progress and I started to ask questions on what to do next and could we expedite the process in anyway. It seems that Beaumont has increased its capacity a bit in their transplants so they were positive about moving it forward. They would discuss it at the next planning meeting and review my case with the surgery team.
Of course, I jumped into planning mode. I started asking dates and what was required to make them. I know that the guys and girls in the transplant office don’t push you because it is all your decision but I needed to start planning with flights. I wanted to make this happen.
Originally, we were working on the premise that I would only be back in Ireland in March for Jill’s wedding (yes Steven, I know you are involved too), and that it would take a lot longer to loose the required weight. Now that the weight issue was sorted, I could always fix the other issue of getting to Ireland when needed rather than them waiting.
The following week I rang them back to see what was happening and they asked me could I make a meeting in January. So that is what is happening now. Now there is a meeting on the 22nd Of January with the surgeon and hopefully we can find second gear in get this thing moving.
In the meantime it is back to training. In the gym, you gotta love Avicii for a bit of motivation
30th December 2013
Controversial I hear ya cry, I know that I have fast forwarded a bit in the blog and I promise that I will fill in a few of the stories and what happened in 2012 over the next few weeks but I think it is important to review 2013 as it comes to a close. In fairness, a lot has happened. We achieved a lot and drove progress along the highlighted route towards the end goal of a transplant
On 21st January 2014, I will be 2 years on the kidney failure magical mystery tour. I was told to expect to be broken down, on dialysis and awaiting a transplant for up to 4 to 5 years. It’s a long time to press pause on life. 2013 was always going to be the year that things needed to happen. The first 12 months I was getting used to everything, the daily rhythm of dialysis, eating tablets like skittles, scheduling my day like POTUS and giving blood like it was going out of fashion. If the laboratory department of Limerick Regional had a loyalty card system, I wonder how many free gifts I would have now.
The stats are kind of mind boggling. In 2013 I will have taken 12, 750 tablets, done dialysis 1600 times, had over 50 hospital visits and spent 14 nights in hospital. All this following the goal of getting 1 kidney.
It’s not all dribble drabble about thinking that your life is being lived on the set of Gray’s Anatomy. I did get out and about a lot. Road trips to the Trilby tour in Darlington, walkabouts in Norway with little Magnus, a cracked idea to visit Korea and rugby tour to Newcastle with the Swords RFC lads, all made the daily drill of dialysis and tablets an easier prospect.
The year was turned on its head by Niall’s phone call in May. The whole transplant process bolted up a gear. A sharper focus and timescale has unfolded and come into play. I am not a man that would like to hide behind the “you would do the same for him” school of thought. This is a massive, balls out, courageous decision by the Ginger man. It may have taken him over an hour on the blower, to manipulate my mule like stubbornness to see the light and realise this the way forward. His determination and motivation to drive the process from initial blood tests to the present point has been huge! He fronted up to the problem of weight that the surgeon could stall everything on and burnt off 20kgs by being lynched daily by some Norwegian fitness madman! He seems to have enrolled in the Paul O’Connell School of commitment.
I think it’s important when you set your standards on anything; everybody will have an opinion on what you can and can’t do. That is in fairness, in most cases, is a caring and concerned thought process by people to protect you from going too far. I like to do things that people will be very cautious of me doing but I know, as captain of this ship, it can be done! The medical team behind me understand my need to wake up in morning and feel like I could batter Tyson, outrun Bolt and snog Anniston. It’s what I expect to be able to do, kidney failure or not!
My treatment has been driven towards getting me to where I need to be and where I want to be. Although the tweaking of tablets lead to a few sluggish sleepy months and hospital stays this year, I am in good shape going in 2014. The plan is to hit the gym and match Nialll’s fitness standard. The motivation is when you fight for the inches, you will win the yards!!
After 3 months and 1 week, I have hit the maximum target weight set up by the surgeons before they would consider me as a kidney donor. So now as far as I am aware I meet all their criteria for kidney donation.
It works out at about 1kg per week over 14 weeks or 2st 3lbs in total in old money. As you can see from the graph, it has been going steadily downward with only the minor blip in October where I held steady at 108 for a while. I even managed to keep the weight off while I was in the US which I was very proud of. The handy part of jetlag is that you can squeeze in a morning workout.
The main changes were a slight adjustment in diet coupled with an increased training regime. The diet itself is not rocket science. Smaller portions, avoiding certain foods and eating at the correct times. Things like portion control, no carbs after six, higher protein intake and increasing the amount of vegetables that I ate all helped the weight loss. Its all sensible really.
The training was a more intense change. For example last night’s workout was
- 3 Front squats cross arm grip with 40kgs in a minute (6 sets)
- 5 16kg kettle bell lifts per arm in a minute (4 sets)
- 1.5km treadmill at high pace
- 8 Bench press with 40kg (4 sets)
- 1Km Eliptical training 4 mins or under
- 5km static bike 8 minutes or under
I have been constantly doing different things and learning to do new training actions. I am pretty impressed with the work so far.
The next goal is to drop another 5 kilos to put me well under the weight requirements for the surgery so that there will be no mention of it. Now it is over to Robbie to make sure he is fit and ready to get this kidney that I am slowly unwrapping.