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All posts for the month March, 2012

Settling into life

Posted by RenalLife on March 29, 2012
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A full week has passed since I began dialysing again, and I write this hooked up to the machine for my fourth treatment.  So far, I am yet to experience any major upheaval to everyday life, other than having to go to the hospital every other day. I’m not naive enough to think that it will always be like this. For example, I am not on any form of dietary restriction yet as my blood results have been OK. And because my kidney – Steve, as it was christened by Hollie back in 2006 – is still working, I’m not on much of a fluid restriction either. Past experience tells me that this won’t be the case for long; while dialysis can initially benefit a transplant, prolonged treatment will cause it harm and eventually the transplant will wear away, until my renal function is effectively nil. I think this is why the doctors have decided to begin my dialysis while Steve is still working, hopefully I should feel very few effects of the transplant running out as the dialysis will take over it’s job, and when that happens, the restrictions really kick in.

So it’s definitely a case of ‘so far, so good’ for us at the moment. The beautiful weather we’ve been experiencing in Norwich has helped, too, and it’s great to be able to get the kids in the car and get out and about in the sunshine. Even trips to the supermarket with the boys are more enjoyable and I’m really enjoying days off at the moment. Not that I wasn’t before, but good weather tends to lift everyone’s mood.

Rickie Brown

Lazybones

As I’ve mentioned previously, this is the first ‘full week’ if you like, this first time we’re discovering how dialysis is fitting into our family life. Tuesday just passed – March 27th – was my first full day of dialysing in the morning, followed by work in the afternoon. A long day, being at the Renal Unit for 7:30am, getting out of there at 12:00pm and then working from 12:30pm until 10:45pm. In the end, it was all fine. I was feeling quite tired at some points during the day but that’s nothing I can’t handle. I’m fortunate, in many ways, that my job involves a lot of sitting down at the moment! If I was building houses or laying roads then I’m sure I’d feel the effects a lot more. One major downside was the fact that I went a full day without seeing my oldest son, Rickie, which is the first time that’s ever happened. It was all his fault; his brother had the decency to get up at 5:00am in order to see me off, whereas Rickie decided to sleep in until past 7:00am.

Selfish of him? You might say that.

Apologetic? Absolutely not.

Forgiven? Most definitely. He can get away with anything, that boy.

Everyone has been so kind with their comments and compliments about the blog. I’m overwhelmed and (almost) embarrassed that so many of you lovely people are taking the time to read it, and the fact that I am told how helpful and insightful it is proving to be is inspiring me to continue.

As always, I am more than happy to receive comments and queries, and if you want to get in touch you can always comment below or email me.

Normal life resumes

Posted by RenalLife on March 25, 2012
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Today has seemed very, very long. We all lost an hours sleep during the night but Freddie doesn’t seem to care. We were both awake and downstairs watching Match of the Day in our pyjamas with our drinks (milk for him, tea for me) at 4:55am. That’s far too early, I’m sure even milkmen are still sleeping at that hour! And after a morning of helping Rickie play with his toys and an afternoon of celebrating my sister-in-law’s 21st birthday, it’s a relief to have both children in bed and the opportunity to relax in front of the telly before I go up for an early night.

Yesterday’s dialysis left me feeling better than before I went on the machine. While in some ways that does make sense, to me there’s also something a little odd about that. Yes my insides are being ‘cleaned’, but having over 80 litres of your own blood taken out of you, pumped through a machine and shot back into your veins over the space of four hours shouldn’t make you feel good, should it? In the past, dialysis would leave me feeling a bit ‘washed-out’. But there was no lack of energy in the middle of the afternoon, no onset of a headache and no need to nip upstairs for a quick nap. Watching my beloved Tottenham earn a point at Chelsea when I got home might have helped; had the result been any different then my mood and general well-being may have altered, but yesterday was a good day and gives me a sense of positivity about forthcoming dialysis sessions.

I’m not having any fluid taken off me during dialysis at the moment, so that may be a reason why I feel OK after each session. Usually renal patients have to have excess fluid removed from their blood via ultra-filtration, as little or no urine is produced. This is a very important part of the treatment as having too much fluid on the body can cause various other health problems, such as high-blood pressure as a result of the heart generally having to work harder, pumping fluid around the body. This is why it’s important for renal patients to stick to a fluid intake restriction, so as to not overload the body with too much liquid in between dialysis. At the moment I’m still weeing a pretty decent amount so I don’t have to stick to much of a fluid restriction, something I’m taking advantage of while I still can.

It’s back to work tomorrow for me after a great, relaxing week off with the family. Fortunately I’m not due in until 2pm as I’m directing the BBC Look East late bulletin (10:25pm, BBC One, Sky Ch981) and so I’ll get to enjoy a lay in tomorrow morning. That’s one of the advantages of getting up with the kids at 5am – the knowledge that it’s my turn to stay in bed for a while the following day. And while it’s great to get to spend the morning at home (sleeping, in bed), the only real downside to working that shift is not getting back to the house until around 11pm. For some reason the BBC are yet to agree to my request for an 11-3:30 job.

Spoilsports.

This coming week is set to be a bit of a test for Hollie and I, we’re going to find out exactly how this dialysis business is going to fit into our lives. Two kids, a full-time job and 12 hours of treatment to fit into the next seven days seems quite a daunting prospect. We’ll cope, I know we’ll be absolutely fine as we always are. But it’s going to be an insight into what our future is going to be like.

Until that phone call comes anyway…

A quick thank you

Posted by RenalLife on March 25, 2012
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I just wanted to post a very quick thank you too all of you who have read, commented on and shared my blog. I began writing this as I wanted to keep a record of how I was progressing with going back onto dialysis and my thoughts and feelings about it. To have had such a positive reaction from not only family, friends and work colleagues, but people across the globe who I’ve never met or even spoken to, has been fantastic. I never imagined that I would receive the reaction I have just from typing out a few of my thoughts.

Your responses and kind comments have inspired me to continue writing, and so…

THANK YOU

…and please keep reading, commenting and sharing.

D(ialysis) Day

Posted by RenalLife on March 22, 2012
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Well, here I am. The one place I never wanted to be again, but the place I always knew I would return to. Dialysis is once again part of my life.

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I’m making it sound much more dramatic than it really is. All I’m doing is sitting on a bed, MacBook open, cup of tea on the side and listening to music. There are worse ways to spend a morning!

On arrival at the Jack Pryor Unit, I was greeted with a face whose name I couldn’t remember. “Joe Brown?” he asked. “That’s me” I replied. It turns out that he, Paul, was a Renal assistant at the West Norwich hospital, where I used to dialyse way back in 1999 as a mere child of 15. As we were speaking I remembered that he was a transplant recipient himself, and he told me that his current kidney – his third transplanted one – has been going strong for almost fifteen years. There’s hope for us all yet.

I entered the room where I’d be dialysing, one of the smaller rooms they have here, containing just four machines. The two gentleman on machines opposite me both greeted me with a nod and a smile and I settled onto the bed for a blood pressure check. It was, maybe unsurprisingly, a little high, but the Renal nurse – Dios – put it down to the fact that I was about to have two needles put into my arm and kept there for three and a half hours.

On that subject, it came as a massive relief that my fistula (people who know me will know this as my lumpy right arm) still seems to be working absolutely brilliantly. A fistula is kind of an inflated vein in my arm, made by connecting an artery to a vein in order to enable it to have needles inserted on a regular basis. The alternative to a fistula is to have a line inserted into an artery somewhere on your body, usually the neck, which is there permanently and used to connect the tubes to. Not pleasant at all. And so for my fistula to still be performing perfectly was a great relief, not bad for a ten-year-old graft that hasn’t been used for five years.

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It all seems to be going very smoothly so far. It’s my first session, and so for a couple of weeks I’m expecting to feel fine after a nice blood cleanse. I know that sometimes it’ll take it out of me and I’ll feel rubbish after a session, but to be honest – this isn’t so bad.

Looking at the bigger picture, I have a wife who loves me, two gorgeous boys who think I’m a superhero (I don’t know how they came to that conclusion), and a job I love. I’m a very lucky man. This dialysis lark is going to have to get used to fitting in with my life, not the other way round.

Hmmm, time for a nap I think. 1hr 40mins to go…

Nocturnal nuisance

Posted by RenalLife on March 20, 2012
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As I write this, I am laying in bed. Not an unusual place to find me at just after midnight, but what is unusual is that I’m finding it difficult to get to sleep. Over the past couple of months I have been exhausted by 9pm and could often be found snoozing in my chair while my wife and I watch tv. “Old Papa Brown” Hollie calls me, whenever I fall asleep. My Hb (red blood cell count) has been through the floor lately, at around the 5.4 mark (‘normal’ is 13-18), which I’m told should make me feel completely void of any energy. But I don’t think that’s the reason for my sleepiness, I put it down to having two little boys and those wretched Breakfast shifts!

Tonight’s insomnia could have something to do with the little person laying immediately to my left. My youngest son, Freddie, woke up with a scream and Hollie has brought him in for cuddles. I should really take him back through to his own bed, but he looks just a bit too comfortable and adorable for now.

Another reason I can’t sleep could be down to the fact that the imminent dialysis is probably playing on my mind a bit. As I’ve said previously, it doesn’t quite seem real at the moment, and more than likely won’t until I’m hooked up and watching the minutes tick down, or up – I can’t remember which way the display goes on the machines. I haven’t been given any instructions or Do’s and Dont’s by the renal team – apart from yet another blood test today – and so nothing has changed. But I’m sure the long list of rules to abide by will come.

I’ve managed to get this week off work thanks to some shift switching and very generous colleagues. With my first dialysis a mere 48 hours away, I plan to spend some time doing nothing in particular with my beautiful wife and two lovely boys. And getting up at 4:45am to direct the Breakfast news on Tuesday morning just doesn’t fit in with that schedule (thanks, AJ).

Right sod this, where’s that free sachet of Horlick’s gone…

‘Free’ time

Posted by RenalLife on March 17, 2012
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This week has felt a bit strange for me and my wife, Hollie. It’s almost as if I’ve been given a last few days of freedom, a stay of execution, perhaps, before I make the long, lonely walk into the Renal Unit for the first time for a few years. We can both see the dreaded haemodialysis machine looming on the horizon, creeping ever closer to us. And there’s nothing we can do about it!

I suppose I’m making the most of still having a free diet and not having to stick to a fluid intake restriction. For those of you who don’t know, dialysis patients have to adhere to a strict diet between treatments as the kidney acts as a filter for the body, taking all the rubbish stuff that goes into your blood through food and drink – horrible toxins and disgusting poisons that can cause you harm if the levels become too high – and turns them into lovely golden urine. All this is done for a renal patient during the dialysis treatment, and so in between sessions it’s important that these levels don’t get too high, as this can lead to further, far more serious health problems. Renal patients are often placed on a low-Potassium diet, which doesn’t allow all the tastiest foods and drinks – it seems – like chocolate, crisps, peanuts, bananas and coffee. Potatoes have to be double boiled during the cooking process to remove much of the potassium they naturally hold, and although cutting out tasty treats is initially a struggle, it’s quite easy to get used to.

Another sometimes difficult aspect of decreased kidney function is having to stick to a fluid intake restriction. With less, or sometimes no urine at all being produced as a result of poor kidney function, renal patients also have to keep a close eye on the amount they drink. When I was previously dialysing my daily fluid restriction was 1 litre a day. One litre. One. That equates to about 4 decent-sized cups of tea per day. Four. And when you take into account milk used with a bowl of cereal or the water used when cooking rice or pasta – even a cheeky ice cream at the beach – then that one litre doesn’t always go very far.

But I can handle sticking to the diet. Cutting out foods isn’t a problem, and you are usually allowed to take a ‘treat’ to dialysis to enjoy during treatment anyway. It’s the fluid restriction that I used to struggle with. And the more I used to try and stop thinking about having something to drink, then the more I wanted one.

So for now, and until I’m told otherwise, I’m making the most of it. And the McDonald’s lunch and large Coke I enjoyed earlier today tasted all the better for it.

Now, where’s my coffee…

Invictus

Posted by RenalLife on March 15, 2012
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I wouldn’t say I’m an expert on poetry, or even much of a fan of it. I’ve probably only read a maximum of ten poems in my life, and most of those were forced on me at school. However, I have found myself returning to Invictus time and again over the years.

It was written by William Ernest Henley, who contracted tuberculosis at the age of 12 and had to have his foot amputated at 17, which I can’t imagine would have been very pleasant in Victorian England!

Despite his disability, Henley lived a very active life until his death at 53.

Invictus strikes a chord with me as it serves as a reminder that no matter what life might throw up, nothing can bring me down, nothing can defeat me. The last two lines in particular resonate with me: “I am the master of my fate, I am the captain of my soul.”

Invictus

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

The call I was expecting

Posted by RenalLife on March 14, 2012
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I received a very important phone call today. Not the one I was hoping for (a new kidney) but one I was certainly expecting. Heather from the Renal Unit at the Norfolk and Norwich Hospital – who knows me from years ago, but I can’t remember her – called to tell me which haemodialysis slots were available and to find out which ones would work best for me.

She had Tuesday’s, Thursday’s and Saturday’s free, and I decided to go for the early morning slots, arriving at the unit at 7:30am on each of these days to be connected to the machines. All being well I should be free of the hospital by 12 noon, which would still allow me to work the late shifts at the BBC, as well as getting home in time for the traditional ‘Football Day’ that me and my two boys will look forward to for years to come. Hollie understands, it’s all part of having sons!

My first dialysis session in over 5 years is due to take place on Thursday, March 22nd at 7:30am. I’m not sure how I’m going to feel afterwards and I don’t think the fact that I need dialysis again will really sink in until I’m there and connected. I’ve always been a positive person and not the type to wallow in self-pity, and I know that there’s always plenty of people in a much worse position than me. And with the support of my family – in particular my wife, Hollie – I know I’ll be fine.

In many ways I’m fortunate; I know what to expect and I know how to deal with the forthcoming dietary and fluid restrictions. You just never get used to going to the hospital three times a week for a four hour session.

That never feels normal.

Day One

Posted by RenalLife on March 13, 2012
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March 13th.

This date has held some significance in my life, particularly when it comes to my health.

It was on March 13th 2000, as a 16-year-old, that I underwent surgery to receive a kidney transplant donation from my Mum. March 13th, 2000, that I effectively got my life back and was able to go to school, to play football, to take my exams, to be a teenager. Less than a year previous to that date my life was turned upside down without warning. My kidneys had failed. I can’t remember much about what happened on the night I was rushed to hospital, but the fact remained that nothing would ever be the same again.

The gift of a kidney from Mum still humbles me today, 12 years on. Now that I’m a parent myself I can fully, finally appreciate the sacrifice she made for me.

March 13th, 2012. Today. The day I was told that I will once again need kidney dialysis. It was a lot different this time around. I knew the deal, I had been told weeks before today that my transplanted kidney was on the way out. I had been told not to be surprised if I was back on dialysis in six months (in actual fact it has turned out to be three) so I’ve had a bit of time to prepare myself for the news. But it’s still disappointing.

On the positive side, the transplant – my second after the condition that put paid to my own kidneys came back and attacked Mum’s – has lasted for five-and-a-half years. In that time I have got married, we’ve bought our first house, been blessed with two beautiful sons and I’ve found a career I love. If I was offered that before my last operation in 2007 I would have gratefully accepted.

I’ll try and keep this updated with news and views about my life as a haemodialysis patient and how it’s affecting me and my family. And you never know, one day I might be sharing the news of a call from the transplant coordinators informing me that there’s a kidney waiting.

Maybe on March 13th.