life

The things only we know: for my friends who really do “get it”.

A few days ago I wrote about how I have brilliant friends who have never made me feel “less than” for having been sick, and who, even though they’ve never been where I am, have just kind of “got on with it” and encouraged me to do the same.

What I didn’t mention in that letter is that I also have another group of friends. These ones do get it. They get it because they’ve been there. They’re sick too.

When I was first diagnosed, I lived in New Zealand. As brilliant as the medical treatment I got there was, NZ is a tiny country population-wise, and as a result of this, I knew a grand total of one other person with kidney disease. A considerably older family friend whose circumstances are completely different. Patient support groups just do not exist there to the extent they do here, particularly for young adults.

After moving to the UK, I was initially fine, my disease was “in remission” and I had reasonable cause to believe it might be years before it came back, if indeed it came back at all.

And then it did. I suddenly found myself living on the other side of the world from my friends, family and previous medical team. The medical side of things was easily fixed once I started seeing a new consultant, but in terms of emotional support, things weren’t great.

In the middle of 2014 I discovered the National Kidney Federation (NKF). Not only are they a charity that exists specifically to help renal patients, they have in-person events that patients can attend, with the intention of meeting one another! Yes please!

In October 2014 I went to Blackpool to the NKF Conference for the first time.

Being in this environment was amazing. Virtually everybody else there knew what I was dealing with, because they themselves, or somebody close to them, had personal experience.

I met people that weekend who will be lifelong friends.

While I was there, I found out that although most of the conference attendees were older than I was, there was another group too, Young NKF. This was specifically for patients between 18-30, and every year, they went on a weekend trip in the Peak District! In September 2015, I joined them.

The friends I have made as a result of events like this are priceless.

As I said in my original post about this weekend;

We’re from hugely different backgrounds, but the one thing we have in common, and the thing that connects us all together, is our need to know we’re not in this on our own. There are others who not only understand at least some of what we’re going through, but are comfortable talking about it, even the really hard parts. The things we might not tell our healthy friends.

Over the last three years, I have watched our group change a lot. We have grown considerably in number (thanks primarily to our social media presence). Members have come and gone, received transplants and started dialysis. Some have got married and had children. Sadly, some have passed away.

Regardless of what happens in our lives, our now not so little group still has the same purpose, to connect us with one another and glue us together through the shared experience of having had our health and bodies let us down.

Once every few months, someone will get The Call. Watching their Facebook wall explode with messages from people who know how life-changing transplants are NEVER gets old. It makes me smile every single time.

A similar thing happens when one of us is struggling. Whenever a comment is posted in our group from somebody needing help, advice or just an audience to rant at, the replies appear almost immediately. People volunteering suggestions, practical help if they’re near enough, or just acknowledgement that nobody is ever alone.

This group of friends inspires me and pushes me to do things I never thought I would.

They also make me laugh. I have never met so many other people who truly appreciate the dark humour that’s only funny to those of us who have really thought about death. They’ll know what I mean.

“Walking with a friend in the dark is better than walking alone in the light.”
– Helen Keller

life

Because you stayed: a letter to my friends

Dear Friends,

The last several years have been anything but easy for me. To go from being a perfectly healthy twenty-something grad student to somebody sick enough to need an organ transplant is a big adjustment, to say the least.

Although this is my life, and I’m the one who’s had to live through all of these things, I know they’ve impacted you, too. No man is an island, so John Donne says.

When I drafted this, I was going to say that you didn’t choose to have a chronically ill friend any more than I chose to have a chronic illness. Then I realised that this isn’t true. By the simple fact you’re still part of my life, I think it’s safe to say that you DID choose to have a chronically ill friend. You didn’t have to stay.

While I’ve been trying to sort my life out, I’ve been surrounded by a huge number of medical staff, patient support groups and transplant liaison people, all trying to make sure I can cope with what’s happened to me. They’ve helped, but some days, it wasn’t them I wanted to talk to. It has never mattered to me that a fair few of you have been on the other side of the world for the last four years. You were still here.

It also doesn’t matter that you “don’t know what to say”. Because you are my friends, the words themselves are insignificant, it’s the fact you bothered saying them, and didn’t do that awful thing of not knowing what to say, so saying nothing at all! That has happened a lot. Nothing is more isolating than feeling like your problems are so awful that people don’t even know where to start.

Thanks for your amazing ability to “just know” when to treat me normally and when to make allowances. I don’t know how you do it, but you do. Even though I’ve changed hugely in the last six years, I’m still myself. Still an overgrown child…and probably still as annoying as hell at times. I suppose if that hasn’t changed by now, it never will! Ha! You’re stuck! #sorrynotsorry

Something else you’ve done, probably without even realising it, is letting me be your friend too. Even though a lot of the time, I’ve been the one who has needed the support, help and special treatment, I am not so broken, or so self centred, that I don’t realise that sometimes you need me more than I need you. I know my illness and I are not the centre of the universe. I wouldn’t want us to be. Thank you for not shutting me out of your life, and your struggles, through fear that you think I won’t cope or worse, don’t care. I do. I realise life can be shit in a thousand different ways.

My entire life has been picked up and flipped upside down, but you have stayed. I could not ask for more.

“Be there. Only be there. Do not leave when you feel uncomfortable or when you feel like you’re not doing anything. In fact, it is when you feel uncomfortable and like you’re not doing anything that you must stay.”
Everything Doesn’t Happen For a Reason, Tim J. Lawrence

future plans, post transplant

The most important thing I’ve ever done; Dear Donor Family

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What do you say, when you don’t know what to say?

A few weeks ago, I did one of the most important things I probably ever will.

I wrote to the family of my donor.

Due to NHS regulations here in the UK, I know virtually nothing about my donor or his family. I know he was male, obviously, and I know he was “middle aged” and healthy enough to donate, beyond that, he is anonymous.

I presume they know equally little about me, probably only that I’m a woman in my late twenties who used to be on dialysis and who now, thanks to them, has a functioning transplant and can move on with her life.

I’m not going to share the letter here, that is private, but I will say that it was strange because although on one hand it was very difficult to know what on earth I could ever say that was “right”, on the other hand, once I sat down and started to actually do it, the words were there.

I think in situations like this, there isn’t a “wrong way”. No two donor family letters will ever be the same, and nor should they be.

As I was writing, I didn’t think about me. I thought about them. I thought about how I could use this opportunity to tell them things I wanted them to know about the way what they did has changed my life.

I wanted them to know that even though it’s been less than a year since my transplant, my life is already completely different. I told them that although I am cautious over my health, and my new kidney is precious, it’s also going to be well-used. I believe that anything less than this would be a waste.

Once this letter is passed onto their donor family liaison team, I may well never find out what happened to it. I would absolutely love to hear from them, and have told them this, but I also have to be ok with the alternative, and I am. In my mind, it’s enough to know I’ve told them that I think of their family, and of my donor, every day. I hope I can do something in my life that honours his. Watch this space.

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nothing that ends in a gift ends in nothing.
post transplant, The Story of Holly & Billy the Kid

Chapter X: Normality?

As I sit here writing this now, I’m almost eight months post-transplant and things are good. Aside from a brief encounter with CMV (a virus transplant recipients sometimes get) Billy the Kid is doing well after his rough start. I’m told that by the 12 month point his results should be virtually indistinguishable from those of a kidney that worked straight away. His 10 day nap hasn’t done any lasting harm.

I feel fine most of the time, and have started to work full time again. This is something I haven’t been able to do for a long time. It’s still a bit amazing to me that I can work from 9 – 5:30 and NOT fall asleep as soon as I get home! Sometimes (not often, ha!) I even go to the gym after work!

Of course my life isn’t suddenly perfect. I’m not “fixed”. A transplant is far from a magic cure-all. There have been various glitches along the way. Anxiety is still a recurring theme in my life and I’m still seeing the psychologist to work out how to deal with this, as well as everything else that’s happened to me, but on the whole, life is good.

There are a lot of things I’m doing with my new, healthy life, but those will be posts of their own one day.

So I guess this is what normality is like?

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I was given this last Christmas. It lives next to my jewellery and I see it every morning. Most days, it works.

For the sake of this blog, this is the end of The Story of Holly & Billy the Kid, although of course it isn’t really!

post transplant, The Story of Holly & Billy the Kid

Chapter IX: Nothing that ends in a gift ends in nothing.

Everybody probably says that THEY have the best friends ever, but they’re wrong, unless they have the same friends as me, because I do.

Mum arrived in the UK (again!) in mid-November, but until she did, my poor friends had to put up with me! My drugged, anxious, sick, tired, generally unstable self was certainly not the best company ever, but fortunately they understood why, and even told ME that on many days when I was convinced I was worse instead of better and would never actually be normal (or not sick!) ever again. Turns out, transplant recovery is not for wimps. It. Was. Hard.

Fortunately, mum and my friends were brilliant at distracting me. As soon as I reached the point where I had more good hours in a day than bad ones, they merrily dragged me here, there and everywhere (Literally, not only all around Manchester, but also to York, Liverpool and Edinburgh!) in an effort to distract me from how ill I sometimes still felt. A lot of travelling probably isn’t what most people would opt to do in the first weeks after a kidney transplant, but it worked for me!

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nothing that ends in a gift ends in nothing; Exactly two months after my transplant, I was in Edinburgh visiting Laurie. While we were in the Botanic Gardens we stumbled upon the National Memorial for Organ and Tissue Donors in Scotland. In the middle of it was a stone circle with these words as a border.
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My donor’s memorial candle in York Minster. I am the least religious person you will ever meet, but some things just feel right.

As painful, anxious and difficult as the first few weeks (months!) post transplant were, I look back at them now (and, yes, now feeling completely normal and non-sick!) and I smile.

“Thanks for not thinking I was nuts when I cried about ridiculous things, or did stuff that was weird or out of character. It really helped hearing “You can do this” and “You’re doing really well.” every time I worried that maybe I couldn’t or wasn’t. I never felt like you were judging me, only encouraging me to be excited and look forward to what life will be like when I’m healthy for what feels like the first time in a hundred years! Can’t. Wait. I could not have asked for better friends.”

post transplant, The Story of Holly & Billy the Kid

Chapter VIII: Billy the Kid

Everybody talks about The Power of Social Media, sometimes so much so that it seems like a cliche, but looking at my phone for the first time after surgery definitely made me a believer! I have never in my life seen so many texts, WhatsApps, Facebook messages, Tweets, Instagram tags, missed phone calls and other notifications. It appeared word had spread. I also promptly discovered that our plan to keep it secret from everyone still in Blackpool had failed miserably, and people I’d met for the first time the previous afternoon had tracked me down on Facebook and messaged me to wish me well and to tell me they couldn’t believe what had happened!

I also discovered that Lindy, who had phoned the hospital several times during surgery for updates on me, had been posting on my Facebook wall keeping everybody updated on what was going on!

Responding to all the messages (and taking the odd Very Drugged Selfie; hilarious, but probably never to see the light of day again!) took the rest of Day 0.

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Lindy appeared on Sunday afternoon. I think she was surprised by how alive I was!

Somewhere along the way, somebody, I don’t remember who, asked me if I had a name for my new kidney. (Among transplant recipients, this is not as strange as it might sound! I promise!) For some reason, my answer was “Billy”, as in, Billy the Kid. As in, some sort of cartoon cowboy! I have not a clue why I chose this name, but it stuck. Billy the Kid it was.

I would love to say that Billy the Kid worked perfectly, that I felt amazing and my life has been happily ever after from there on out. Unfortunately he didn’t, and it hasn’t.

I knew beforehand that because BTK came from a deceased donor, and had spent quite awhile in transit being transported to MRI, he might be a bit “shocked” to be transplanted and not work straight away. At the time, I was ok with that, but when it actually happened, it was much more stressful than I expected it to be.

While everybody around me was saying things like “This is really common!” and “It will wake up!” and “Mine took XYZ days (or weeks!) to start to work!” I was thinking “I just KNOW I’m going to be one of those people who gets a transplant that doesn’t do anything.” This was not helped by my still having to do PD at night while I waited for things to get started. All I’ll say on this topic at the moment is that post-transplant dialysis was an experience I’m trying to put behind me.

On a happier note, after the longest ten days of my life, Billy the Kid woke up. He didn’t exactly go from 0 to 60 in a day (and to be honest he still hasn’t, even as I write this 8 months after transplant) but he worked well enough for the consultants to be happy, and to be able to avoid needing to be biopsied, much to my relief!

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Hands down one of my all time favourite pictures of myself. You’d be that happy too, if you suddenly had a working transplant!!!

On the 20-something of October, after 2.5 extremely long weeks (maybe I’ll write about them one day, probably not, but maybe), I was finally discharged from hospital and went to stay with some lovely friends who live in Manchester. This was brilliant as it meant I didn’t have to go back to the city where I actually live, some 30 miles away, and could stay nearby for regular outpatient clinics and potential emergencies, of which there fortunately were none!

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I’m usually a cat person…except for when I’m not. Dog cuddles definitely helped.
dialysis, The Story of Holly & Billy the Kid

Chapter VII: 18 missed calls; and a tram.

I arrived at the hotel in Blackpool feeling mightily impressed with myself for having lugged the cycler on the train on my own (well, almost on my own, the station staff helped!), checked in and went for dinner with some friends, both of whom are transplant recipients. After dinner we went for a walk to look at the Illuminations and have a drink. While we were walking along the prom, we spotted a tram with a big pink NHS “Donate Life” banner on the side of it, which we thought was pretty cool. It wasn’t until several days later that I saw this photo on Facebook. The tram is in the background.

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While I was taking this photo, my phone was in my pocket, ringing and ringing…

After we’d walked as far as we could, we stopped for a drink and Sarah started talking about how it was coming up to the 10th anniversary of her transplant and what it was like when she got her call.

Sitting in the pub, I pulled my phone out to check the time. I saw 18 missed calls, text messages and Facebook posts. I knew.

I don’t remember what I said to Sarah and Tracey as I jumped up and ran outside onto the street to phone Emma back, but I remember thinking “Shit! My phone is on 5% battery for possibly the first time in it’s life and THIS is when it happens?!”

My friends pretty quickly figured out what was going on, and having both been through this themselves, they realised how big a deal it was. By the time I’d spoken first to Emma and then to the transplant coordinator on the phone, we’d established that everything was ok time-wise (I ended up arriving at the hospital long before the kidney did anyway), and my next task was to get back to the hotel, pack, and then wait for a taxi to go to Manchester Royal Infirmary.

I remember being surprisingly un-panicky on the tram on the way back to the hotel. I don’t know why, usually I’m the first person to run around in circles in a situation like this, but not on that occasion, or not yet anyway!

Once we got back to the hotel, we discovered that the staff had made an absolutely mammoth effort to locate me! They had checked every bar, restaurant, the gym (HA!) and the smoking area, been up to my room multiple times hammering at the door and eventually ended up double-locking it so that when I did get back, I’d be forced to go to reception to see what was wrong with my key card.

When I had packed, we went down to Reception to wait for my taxi. And wait. And wait. The taxi took a ridiculously long time to get from Manchester to Blackpool – the reasons for this will probably be forever unknown, but by this point my stress level was certainly increasing!

Contrary to what I thought I would do, I didn’t tell very many people what was going on. I knew straight away I didn’t want anybody else at the conference to know where I’d gone, at least not yet. This was partly because some people get calls for transplants that don’t end up going ahead for various reasons, but also because of my parents. As luck would have it, they were on holiday in Tasmania at the time, driving through a remote area with very limited phone and internet access, and the last thing I wanted was for them to find out via social media!

Obviously Emma and Lindy already knew, as they’d spent several hours of their Friday night trying to get hold of me, and once the taxi finally arrived I sent text messages to two close friends in NZ, both of whom then talked to me the whole way there. As Jenny put it; “This must be one strange taxi ride!” I remember arriving into Manchester off the motorway and seeing all the cranes lit up, while Cyndi Lauper and Michael Jackson were on the radio. That’s a moment I won’t forget.

When I arrived at MRI, I went up to the ward and spoke with the nurse on duty. It was about 3:30am by this point, and as tired as I was, I had very little sleep as people were then in and out talking to me, taking bloods and checking I was fit for major surgery the next day.

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Just some of the bloods I had drawn before my transplant. Now, I wish I’d taken more pictures of this moment in my life.

It was when I was sitting there on my own in the middle of the night that I started thinking. I realised that although I was there for an amazing reason, somewhere else in the UK, in another hospital, another family was also awake in the middle of the night, doing the hardest thing they’ve ever done, saying goodbye to somebody they loved. Somebody who could have been a son, a brother, a husband, a father and a friend. Somebody who, because of a choice he and his family made,  was about to become my donor. Only other transplant recipients can ever know what that’s like. I think of him every day.

At some point in the early hours of Saturday, I met the surgeon and he told me he’d seen the kidney and that it looked like a good match, but wasn’t perfect. I asked him whether, if it was one of his children or himself being offered this organ, he would accept it. He said he would, and that I shouldn’t be worried about anything because “today is a good day”.