My first kidneyversary – one year on from transplant!

As my first ‘kidneyversary’ just flew past, I felt it was time to connect with you all again; to apologise for my radio silence; and, most importantly, to give you an update! To be frank, I am swamped with things I want to write in this kidneyversary post. I have decided to share the highs and lows of getting to know my new kidney over the past year – and will put the immediate transplant aftermath in the hospital, in a separate blog.

Firstly, I must introduce you to KP, my new kidney! I will not bore you here with the ‘method behind the naming madness’ but will be more than happy to share with you offline, if you ask.

I am delighted to announce that, as I type, I have that ever so slight feeling, of needing to run to the loo! This is a feeling I have come to know well and – even when the timing is most inconvenient – it is a feeling I relish. I am not surprised I feel that tell-tale pressure on my bladder again, as I have had 2.5 litres of tea (decaf of course) so far today. When people joke that ‘Scots drink a lot’ I had no idea this is what they meant!

On that note, I must prepare any potential transplant patients reading this… Assuming (fingers crossed for you) that all is going well post-op… expect, firstly, to be running to the toilet like your life depends on it – which in a way, it does! Having gone through dialysis and being told you can’t have more than 500ml a day. It is rather a shock to the system, to come round from transplant, to be told that you should now drink upwards of 3 litres every single day. You do get used to it – but even the happiest transplant patient will feel like a balloon at first and be sick of the site of the toilet within a couple of days!

Since transplant, it has been quite a year for me. The recovery was not as instant as my impatient nature would have liked and I spent, what feels like, a very long time, certain that things would never be well again. Things were not back to normal, even though I did carry on with life as if they were. Every day was a struggle, as my body got used to the kidney, the drugs, its new state. However, looking back, things were ‘righting themselves’. Much like the ‘frog in the water’ I, paradoxically, failed to notice that the water was cooling down!

Post-transplant time is a time of hectic madness and worry – and I was not prepared for it. I had spent so much time worrying about the operation (which was actually the easy bit for me as the patient) – I had absolutely no concept of what would be required of me afterwards. The endless days spent sitting in the hospital, for the third blood test that week. The scans, the questions, the detail and the nervousness. Never really feeling confident that the kidney was still working – and never feeling like the kidney failure, dialysis or the transplant could ever be anything other than at the front of my mind. Those freezing January mornings, feeling sleepy, disorientated and seeing patients and staff who I would come to know so well over time seemed to go on for ever, but now seems like a distant memory. Am I complaining? Not a bit! The level of care I received at the hands of our NHS was incredible. Not once in a year have I ever felt alone, mistrustful, or uncared for. If there is even the slightest hint that all is not absolutely perfect, they were on it.

If anything, I would say that, as a patient, one is perhaps given too much information. I must admit to having stopped the nurse from going through, in great detail, all the terrible things I might go through now I have the new kidney. I wanted to keep things, very much, on a strictly ‘need to know’ basis. Complications may arise and, of course, I want to know what to look out for, but I really didn’t want to spend my precious gifted time, worrying instead of living.

This on-going looming potential threat of a million things that could go wrong was the most difficult thing to cope with post-transplant for me. I spent so much time worrying about what would happen if the kidney didn’t work; how many viruses I would now catch; or tirelessly fretting over the latest horror story I had heard about the immune suppressant drugs. The truth is, maybe I am one of the extremely lucky ones, because all I have to report is positive. I have no side-affects from the drugs what-so-ever and the kidney is working well (knock wood!)

Life is certainly different from how it was in many ways; I am healthier; I need to remember to take the ‘kidney pills’; and I absolutely must drink more than anybody can believe! I always have KP at the back of my mind, but this is no bad thing. I am due my 3-monthly check-up tomorrow, which always makes me nervous, but I will go in with my fingers crossed and my bladder full!

I write this as a brand new being – and feeling like the luckiest person in the world. I have not thrown up in over a year. I have had no headaches, no sickness, no sleeping during the day – none of it. I can barely recognise myself. I can go to work, then the gym, followed by drinks and return home late – and I feel as normal as anybody else would. I can’t describe how incredible this feels, to be able to say I feel ‘normal’ when, in truth, looking back, I had no idea what normal was. To even feel an interest for things again, things that I had lost. The desire to go for a walk, or to the theatre, to listen to music, or watch a film. All of those little, every-day events were rather eclipsed by the kidney failure for the longest time. I now feel like I am living, rather than just surviving. I had the best December 2017 I could have wished for, because I was able to fall in love with Christmas all over again. I could go to the carol services, the Christmas parties – join in the fun and do all the things that made me feel Christmassy – something that was snatched from me for years by kidney failure.

As my transplant happened just before Christmas, I can recall, rather bizarrely, a wonderful troop of carol singers, regaling the ward with Jingle Bells, over and over and over again – because that was the only tune they had rehearsed at the time. I was not sure how I would feel upon hearing it this Christmas past! Fortunately, it reminded me of the best Christmas gift I could have ever wished for – one which can never be topped!


Transplant Time

(as promised, ‘the kidney is working; we are well and I have just had the greatest pee of my life!’ – 14th December 2016.)

So December had arrived and everybody was anticipating the 25th of December, Christmas day, but not me. December 14th was to be my Christmas day. The day when my loving partner Andy would give me the best Christmas present imaginable, a good – but slightly used *one careful owner!*, kidney. So whilst others rushed around buying gifts, attending parties and consuming heroic quantities of delicious Christmassy food – I had my mind fixed firmly on just one thing – the impending day that would *hopefully* change my life.

One of my biggest fears – in the lead-up to transplant, among many, was that I would not have the emotional capacity to go through with the transplant. I had very many wobbly moments where I felt the whole thing was just impossible. I could not imagine packing for the hospital; getting the car to go to the hospital – everything seemed terrifying. I didn’t want to go through with it and – more importantly – I did not want to put my partner through it. However, I was quickly and firmly told by Andy that he was getting rid of that kidney and – if I did not take it – he would give it to somebody else!

There were some days where I just wanted to get on with it – and others where I just wanted to burry my head in the sand – a desert preferably! I recalled, with great frequency, having my dialysis line inserted, when – I am not proud to say – I was a hysterical mess. The transplant would make the line insertion look like child’s play – and I was convinced I would freak out and the whole thing would have to be called off. Throw in my overwhelming fear of needles and you have a recipe for a very tearful disaster!

Then Sunday 11th December arrived – a day that would fix my mind firmly on going through with that transplant, no matter what. December 11th I got the flu. I was so ill with it – I could barely move – but my only thought was, ‘please, this transplant must go ahead’. The fear that it may not happen made me realise that the new kidney was the thing I wanted most in the world and I would go through anything for it. Fortunately my flu had gone by Monday evening *a miracle in itself* and we were soon on admission day, December 13th *unlucky for some* – but not for us.

Contrary to my worries and fears – I can honestly say that I felt very little trepidation. The mind is an incredible thing. I do believe that in times of great fear or peril – it has the ability to shut itself down to an extent, so as to preserve the body and allow what needs to be done, to be done. My fear of needles had completely vanished, which was a very good thing indeed, as there were a lot of needles in my future!

The preparation day (T – 1) went by relatively quickly and without fuss. Final tests were done and the doctors ensured they knew where to cut; by drawing on us with felt-tipped pens! A slight, worrying hitch occurred when the hospital FORGOT that I absolutely must have dialysis before transplant. This meant me having, only two hours, emergency dialysis in the middle of the night before transplant. I was so tired by the morning; I’m not sure anaesthesia was necessary!

So ‘transplant time’ had arrived and Andy was taken away from me at 8am for his nephrectomy – and I had three hours to wait, worry and contemplate – the bit I was dreading the most. I simply lay down, listened to some comedy and thought about Andy. When, a few hours later, I heard he was okay, I sighed with relief and it was now my turn.

As I was wheeled through the chilly hospital corridors, snuggled in my blankets, towards the operating theatres – I kept my fingers firmly crossed the whole way; desperately hoping that the new kidney would work. After waiting for a while in a reception area – it was now time for me to ‘go under’. Having confirmed my name and date of birth for the last time, the game was now on! Being put to sleep was an interesting – and not unpleasant experience. I was firstly covered in, what I can only describe, as a giant deflated lilo. Warm air was then pumped under this lilo-like thing and within seconds I felt very snugly and warm indeed. The needle was placed in the back of my hand and the oxygen mask placed over my face. I remember taking the mask in my right hand and being coached through breathing deeply and calmly into the mask. After a short amount of time, I was enveloped in a misty fog, I felt a great feeling of euphoria and the next thing I knew – I was waking up on the recovery ward.

When I came round, my immediate feeling was one of pure elation, because I knew it had worked. Despite me insisting that they MUST tell me whether it had worked or not, as soon as I awoke, I knew that it had. I can’t really explain how I knew – but my body knew. For one thing, I was absolutely desperate for the toilet – more desperate than I have ever been in my life. After being assured that I had a catheter in – I was told that the feeling was so strong, because the kidney was not only working, but working extremely hard. So, with this in mind, I could let go of my fears and my pee! …and with the kidney producing over 500ml of fluid an hour – I most definitely did let go of my pee!