Hob Nob Anyone?

No not the McVitie's biscuit, but rather a crude and blatant attempt at grabbing your attention for the photo displayed. Who is that important and photogenic smartly dressed person in the photo? Well apart from me on the right, Prime Minister  John Key made a special visit to Pinehurst School recently.He visited in a palindromic capacity; he is both the local MP and the PM, and came to meet with me to discuss world affairs, oh no sorry, he was here to address the Senior College Assembly and tour the rest of the school.

I was lucky enough to meet him in the school foyer and we spent sometime discussing life in London and how it compares with life in Auckland. He lived in Barnes, West London for a few years, prior to his entering NZ politics. He does come across as a genuinely warm and friendly man, albeit still a politician! The children were thrilled to meet him as he toured from class to class.

News from theWaitemata DHB about the new dialysis unit. It was officially opened up by Health Minister Tony Ryall last week and and is operational. A staggered transfer over of the 60 North Shore residents is planned over the next three months. I did hear from Edna on her last day at Carrington that there were moves afoot for me to stay dialyising where I am, with the current ability for me to stay late. This would potentially continue until December when I would be scheduled to attend training for about 2-3 weeks to learn how to self dialyse at home, using the tunnel line in my chest and not having to have an unsightly fistula placed on my forearm. This would be a benefit because I would be able to plan my own session times, have more of them per week in the comfort of my own home, and with longer dialysis comes better refininement of the blood and better filtration of the toxins that build up every day. On the down side are my 2 cats and dogs, who, up till now, have the complete run of the house, including bedrooms (I know, how terrible!, but you try telling a 19yr moggie that he cant snooze with his owner anymore!). There may have to be some lifestyle changes, but all for the better. Sorry Bagpuss.

I seem to have run out of politicians to mention in this entry, but I think thats enough of hobnobbing with our elected lords and masters. Normal service will be resumed next time, in the meantime enjoy a biscuit....

Goodbyeeee...

At my regular dialysis sessions we are a fairly close knot community, as you would expect, as we spend upwards of 12 hours a week in each others company. Some, like myself spend the time on our electronic gadgets, some read, others watch TV whilst quite a few doze and chat to their neighbours. As you would imagine bonds develop and a sense of great fellowship develops, akin to the dwarves and hobbits following Gandalf, with perhaps less wizards.
Therefore when some one goes from the unit it can be a great sense of loss and we have to adjust to new faces and a change in the routine. The same familiar faces, who have occupied the same chairs, in the same places for perhaps months or years even become like established buildings in a city: part of the landscape, dependable,  solid, perhaps not loved, but would be missed if they were not there.

So imagine the disruption and bemusement when two of the nurses said their farewells on Monday.  Kun is moving off to pastures new as a trainee doctor, and Edna the Nurse Manager is transferring to another renal unit to be part of their management. A small party was held and we were showered with goodies...perhaps not the best treats for a host of diabetics, but enjoyable all the same.

The chief Charge Nurse made a  special trip out to see us, speeches were given and drinks/nibbles quaffed. Much to the embarrassment of the 2 staff members , who are the kindest and gentlest caring souls possible, . Their care and attention and more importantly their sense of fun will be missed. It is not often that we think to appreciate our nursing team, rushing out the door after 4 hours of being strapped to a machine, not unlike being manacled to a toaster, desperate to get away and away back home to normality. Sometimes people leave suddenly for all the wrong reasons, but when it is a happy event like this,we all feel cheered and glad to have been part of their journey, as well as having them being part of ours, helping us along our road. Three cheers for Kun and Edna!

Under Pressure?

My thoughts go out to the people of Christchurch, who were rattled again yesterday. It must be a very tense period for the populace. After the last big jolt in February, Auckland DHB's took around 80 dialysis patients due to problems with the water supply, and damage to infrastructure. How on earth they coped with the additional load, without any change to the normal routine of the exisiting patients, is beyond my comprehension. I understand that extra shifts were put on for the Christchurchians, amd we all coped marvellously.

Now moving swiftly on to dialysis news.......last Friday evening my nurse suggested we try to modify the regulated fluid retrieval and delivery system to see whether my blood pressure would remain stable at the end of the session, instead of it plummeting faster than Phill Goffs approval ratings. Normally my blood pressures start failtry high at around 160/90, and then slowly drift downwards before a final slump at the end of my 4 hours, leaving my dizzy and unsteady (No, I am not normally as dizzy as you may think), with pressures of below 100 or even 90/70!
As a result I have to sit like a cat in a catshow being examined and repeatedly checked by the nurses every few minutes until my blood pressure comes back above 100, and then hey presto I am released back into the community.
So my Friday attendant Raj, set the machine to take 3 litres of fluid off in the first hour, and then in the last 3 hours gently takes the remaining 500 mils, with me plateauing at around 115 for the last hour. Brilliant! No wobbles whatsoever.

I asked last nights nurse whether she could do the same, but rather like a disorientated carrier pigeon she was unsure of where she was going with this,  so we reverted to the usual method, and lo and behold, after 4 hours I was dizzy again...

Thank you Raj, it's great to see that sometimes in life its fantastic to have pressure!

If it's app-ropriate..

After Mum's funeral last week and the emotional rollercoaster that surrounded it, life soon gets back to normality, especially with the thrice weekly routine to the Dialysis Unit.
One of my essentials for dialysis is now my ipad, I might go mad without it! Before that I used my work laptop and watched DVDs and downloaded films on my gig stick. But that was always cumbersome, and not having the ability to look up stuff on the interweb I found frustrating,  as my mind quickly wanders due to its inquiring nature. I used my iphone for a couple of weeks to listen to music and watch a few films, but the screen size is really too small. Then Apple wowed us all with the ipad, quite simply brilliant. I can now watch films, TV shows, docos, peruse my library of books, quicly go into the net, zoom around the globe on Google Earth, buy stuff both from Ebay and Trademe, send and receive emails, all using the same lightweight device. How did I cope without it?

Apple works with thousands of software developers over the world to bring us downloadable applications (apps) that we can install on our phones and ipads, and sync them with our home macs as well. From this blog point of view, my favourite renal app is called Kidney Diet. It has a simple clean interface that allows the user to search for foods and then have the nutritional information displayed.
The results give Sodium, Potassium, Phosphorous, Protein and Calries, all in an easy to read format,  highlighting values in red if any are considered high, and therefore to be avoided, or taken in moderation. Great! I can now safely wander round the supermarket and rather be in the dark about whether I can eat certain foods, or memorise the long list given to me by my dietitian, i can now look up values there and then and make a purchase based on that. I was shocked to find that strawberries are high in Potassium, as are Cantaloupe and Honeydew melons, so a grumpy summer was had! Luckily Watermelon is not so bad, and blueberries are good too.
I'm not replacing the advice of my dietician, a lovely lady called Lynne Olsen at the ADHB, but rather augmenting her advice, By selecting appropriate food choices I can make the weekend feel better, as the build up of the harmful potassiums and phsophates can be horrible after an extra day of no dialysis. So by avoiding foods high in those substances then my mouth feels less metallic and I am less inclined to be " a bit off".
Being a US based app it does have all the fast food chains over there, so there appears to be a large amount of fast food, but we all know those are bad and all results for those types of fast food appear in red! However there are the basics and most fruits and vegetables are given, which is great for recipes and cooking.

All in all a great little app, and worth paying $6.49 for.
Check out their website for more details or take yourself done to Itunes...
http://www.kidneydiet.com/

Another Public Holiday, a day off for some?

But not for us on dialysis!
Yes although on Monday we celebrate Her Madges Birthday here in NZ (and yet strangely it is not a public holiday back in the good old UK), and that does mean a good lie in on Monday morning, it still does not mean a day off from the routine! Whilst everyone else at work makes plans to get away from the city for a couple of days and enjoy the extra day, those of us manacled to our machines thrice weekly will still have to endure the ongoing ritual, at the same time just to round off the long weekend. Of course with no work it does mean we can arrive earlier, but the shift does not change and so I get there at 3pm, the start of the late shift. Dont get me wrong this is not a complaint, just an observation and a reality check to those who ask what my plans are for the long weekend. we don't get a day off from dialysis.
Yes it is a better drive in because there is no traffic whatsoever on the roads, but the drudge is still the same, except for the nurses and technicians who get a day in lieu and time and a half for working on that day. Good for them, they deserve it!

Corgis barking Happy Birthday!

More pictures of Mum

 This is Christmas in Northampton in 1999, same tree for the last 20 years!

 Near our home on Newhaven's Riverfront 2003, Sussex

More Christmas 1999, in her favourite chair.
 

A sad old world..

Today is a sad day for me, as some of you may know my mother passed away in January after a traumatic collision outside her local church resulted in a leg amputation and then ultimately to lapse into a coma soon after Christmas. Due to the complications in the English legal system  her funeral was delayed pending autopsies. She was eventually allowed to have her service at her church yesterday. Because of the time difference it was 1.30 am here, but I stayed up just so I could feel part of it. I had kindly been sent the order of service by the funeral directors which arrived just in time in yesterdays mail.
This blog is about life on dialysis and its effects on me, my work and my family. I never realised that it may impact on my life to the extent that I would miss my own mother's funeral, but the logistics of getting to the UK and arranging dialysis there and transport, not to mention the temporary removal from the transplant waiting list here all added up to my father asking me not to come as he was worried for my health, and agreed that mothers prime concern was my welfare and that she would not want me to endanger myself by flying over.

So here I remain, and having stayed up late last night to be at least conscious at the start of the proceedings was in some way comforting. I spoke to Dad just as the funeral directors arrived to take him down to the church and we both exchanged comforting words at this sad occasion but also one of celebrations for her life and works.
I feel so sad for him, but am impressed by his resilience and determination to carry on, and cant wait for my new kidney so I can travel freely and see him once more and lay some flowers at my mother's grave.