Friday, November 7, 2014

Wherever you go, there you are

I know I said I'd write this post earlier in the week, but this is the first time I've had the chance to sit down and do it!

So. I think last time I wrote about kidney disease and I on here, I had only recently discovered I'd relapsed again, and was just about to start some more Rituximab and steroid treatments.

I had two more rounds of Rituximab (my 3rd and 4th sessions overall) in April of this year, and was very fortunate that even though my GFR (amount of kidney function I have remaining) is approximately half of what it was last time I had it, I still tolerated it well and it (along with Prednisone and various other meds) achieved its aim of putting me back into remission reasonably quickly.

This isn't Rituximab, this is IV iron, which I took a photo of while I waited to morph into the Incredible Hulk. I was sadly disappointed. ;-)
I was really encouraged by a conversation I had with my nephrologist where he said that even though I was a "repeat customer" and my first dose of Rituximab didn't put me into remission for as long as we hoped (just short of one year), he had seen and treated several other people who get "second time lucky" and that THIS lot of treatment could be more successful. "It could last you twenty years". Obviously that would be amazing and as close to a permanent cure as I could ever hope to have, but how realistic that truly is still remains to be seen.

Instagrammed this line solely because I liked the colour. Yep. Eight hour infusions are looooooong.

For this reason, and because we know that I will never really improve, only stay the same or deteriorate, we decided that this would be a good time for me to start the transplant evaluation process.

I'm not going to go into every detail of this, simply because it was long, drawn out and probably not very interesting for people outside of my "renal bubble", but the conclusion was that because I'm young, otherwise healthy and mentally fit, there's no reason why I shouldn't be able to receive a kidney transplant.

Right now, I am suspended on the deceased donor waiting list. This is because my GFR is 16 and still slightly too high to qualify as "sick enough". A tiny bit frustrating, but I don't suppose being considered "too healthy" is really something to complain about!

This is what happens when your supervising specialist gets caught up in a car accident on the way to work. Not a lot!

In terms of dialysis, this is still something that's there in the background, and although it was seriously discussed earlier in the year, the consensus in the end was that patients tend to "know" when they need to start, in that they feel very unwell, tired etc. At the moment I do not, I am so lucky to still feel healthy most days (aside from a few medication related issues!) and am able to continue working full-time. Because of this, it's obviously not in my best interest to start dialysis at this point.

So yes, that's where I am right now. It's been a slightly mixed and rocky year, but right now I am stable again, which was our goal. How long for is completely unknown, obviously, but so far so good! :)


Tuesday, November 4, 2014

Life, lately (and, incidentally, NOT so lately...)

So it turns out I've managed to go almost a year without keeping up with this blog!

I never thought I'd be one of those bloggers, especially since I've moved over here, but apparently I have!

Thanks to Instagram and for helping me actually remember what I've done this year!

Not much happened in the first month of this year. I spent NYE in the Lake District with some friends, participating in the entertaining but sadly not very environmentally-friendly activity of letting off paper lanterns. 
I also went to Lancaster, which I've already written about here

This month meant that I had officially been living in the UK for six months. At the time I thought it had gone really quickly, but now, having been here for over a year, I think it's gone even faster!

Spent some more time with Lindy this month, making friends with not just her dog, but one of her friend's dogs too! Fortunately the two of them get along pretty well, most of the time, when they're not racing around fighting over a toy!
I also started treatment for my CKD again, but I'll write about that in a separate post either tomorrow or the next day.

This month I went to Edinburgh because Laurie, one of my very first blog-reader-actual-friends, turned 30. She had a rather quirky, unusual approach to this, including a space-hopper competition and various Mr. Men themed items!

In May I went to Skipton and to Clitheroe, two cute little towns that I absolutely loved visiting and taking photos of - more days like this please! :)

Went to Chester on an epic mission to surprise Lindy for her birthday. She THOUGHT that she and her husband and another couple were going away overnight...and they did...but with multiple other people appearing along the way! Completely hilarious.
I also visited Blackpool Zoo (thanks to working in a nursery) and went to Starquest, the Big Brownie Birthday celebration event for Girlguiding Lancashire North-West, a full-on and crazy day, but lots of fun.

This woman, seriously. Longest birthday ever. Most people probably have a party or dinner or whatever for their 50th birthday. Not Lindy. At the end of July I spent a weekend at her house (along with about 25 other people) doing ridiculous things like massive treasure hunts and wearing crazy hats. It was an awesome weekend, and one of those moments that made me so glad I'm still healthy enough to be here in the UK and life
Also this month, work broke up for summer holidays, resulting in far too much cake and chocolate in our staff room, and Sam (Brownie unit leader) and I went to Guiders Day for LNW and spent the afternoon behaving like overgrown children!

Went to Edinburgh again this month for my first experience of the Edinburgh Festival! Laurie and I spent several days just wandering around, watching all different types of things. I can definitely see why people come back to this year after year!
I also met up with Christina, another Kiwi who has recently moved to the UK, and we spent the day wandering around Manchester.

September is birthday month for me, unfortunately I spent this one at work, but went to Blackpool in the evening to see the Illuminations, which were interesting. I can see why people like them, and I'm glad we went, but taking two and a half hours to drive a few kilometres was completely nuts! Best part of the evening was definitely the ridiculously huge cheesecake!
It was also the 4th anniversary of the first Christchurch earthquake this year. Now that I live on the other side of the world this felt so strange, like it was much more long ago than it really was.

This month I went to Blackpool (again), this time to the annual patient conference for the NKF. I don't want to write too much about this now, because I'm going to do a whole post later on - I think it's worth it.
I also went to stay with Lindy again, and we visited Kirkby Lonsdale and Devils Falls, which were really lovely places to wander around in for an afternoon.

And now I've caught up! Or at least I feel like I have! Aside from a couple of extra posts about health related things, I'm drawing a line under the last ten months and starting from now on...


Friday, October 31, 2014

Thursday, August 7, 2014

Wandering in Lancaster

I'm writing this post on my phone on the train from Preston to Edinburgh. I haven't posted from this Blogger app very much before so I apologise in advance for any strange looking errors! 

Anyway! I am on my way to visit the lovely Laurie and have my first experience  of the apparent madness which is the Edinburgh Fringe Festival! I'm rather excited about this, and figured I'd use the 2.5 hours I have on this train to catch up on some post updates and photos from loooooong ago! 

I do take my camera pretty much everywhere I go, and almost always upload the photos to Facebook, but, as you've probably noticed, they don't always make it onto here straight away! 

This feel like ages ago now but here are some I took when I visited Lancaster, which is about half an hour away. 

Lancaster Castle is pretty cool. It's still a novelty to me that over here you can walk down the street and right there is a huge castle, there's absolutely nothing like this in NZ!

This shop reminded me of something from Harry Potter, and amazingly I managed to leave without buying anything! 

Right about this time I managed to do goodness-knows-what to my camera and end up taking a whole bunch of pictures with a horrible orange tinge! I was a bit sad, until I discovered that in black and white they actually look kind of cool! 

Unfortunately, while I was here I was unaware of some of the really cool (and slightly spooky!) history behind Lancaster. I can't link on this phone but Google "Pendle Witches" to see what I'm talking about. I would have loved to go on a tour or something about this, so it looks like I'll be heading back at some point! :)

Sunday, August 3, 2014

One year, almost!

Hello friends!

After having pretty much abandoned this blog (yet again!), I noticed (thanks to my Timehop app on my my phone), that one year ago today I published this post!

In some ways, it feels like I've been here for much longer than a year, but at the same time it feels like I've only just left home, and there's absolutely no way it can have been that long since I last saw my friends and family!

Obviously I intended to be a much more consistent and better blogger than I've actually ended up being, but since I'm now on summer break for the next six weeks, and have the time and inclination to resurrect this site, I figured I might as well!

I decided that instead of writing one huge mammoth post about everything I've done since I last wrote in April, I'd write a few different ones, since I also have quite a lot of pictures to share as well. Watch this space! :)