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Home is where the haemodialysis is

Posted by RenalLife on March 13, 2013
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Before you read any further, please be warned that this post contains images of blood filled tubes and needles poking out of my arm. Those of a nervous disposition might want to turn back, or alternatively swallow some courage and read on. Come on, what’s the worst that could happen? So you vomit a little? You’ll live.

As the title suggests, I’m dialysing at home! A long journey to finally get the machine and the paraphernalia installed in our little third bedroom is finally over – and as an extra bonus, Hollie now no longer has a room in which to store junk. Win-win for me.

My home dialysis room

My home dialysis room

I’ve been home-haemodialysing now for four weeks – and I can’t believe how much of a difference it has already made to my life. Travelling backwards and forwards to the hospital is already a distant memory. It feels like I’ve been dialysing at home forever. It’s so nice having the machine there waiting for me to be able to hook myself up whenever I like, rather than being tied to a hospital schedule. When having hospital treatment, I was up and out of the door by 7am every Tuesday, Thursday and Saturday morning. Now, on a day off, I can mooch about the house, play with the boys, have a shower and choose when I want to dialyse. And as I’m now dialysing more often, I can have an extra cup of tea when I get up; I can have that large Red Bull over a pint of ice without feeling guilty and doing liquid calculations in my head, wondering how this will affect my fluid gain for the next dialysis session. Everything is more relaxed – fluids, diet, lifestyle. It’s just so good. If you are reading this as a dialysis patient, either haemodialyis or CAPD, I beg you to explore the possibility of home-haemodialysis. Once you get past the stigma of putting your own needles in, the rest is easy.

The machine itself takes around 40 minutes in total to set up. From priming the machine, getting saline into all of the tubing and mixing the dialysate fluid (the stuff which removes the toxins from my blood). Then it’s time for the needles. Something I never look forward to, but I’m always pleased with myself once they’re both in! I start by removing the scabs from my previous session, which goes against everything I was told as a child! This is so I can use the same holes as before and the needles can slot into my fistula with greater ease. Once the three hours of dialysis is over – and doing that one hour less per session makes a lot of difference – the machine then has to be put into a hot disinfectant clean lasting around 30 minutes before I can then switch it off, close the door and forget about it for another day. All in all, it’s about four-and-a-half hours that I’m up there in my renal room. But compared to five-and-a-half that I spent out at the hospital – sometimes more – it’s no real hardship. Plus – I can stay in my pyjamas.

needle3_needle_in1_

*Click on each image for a closer look

I can’t quite believe I’m doing my own dialysis. This year will be my 14th year of suffering with kidney problems, and when I think back to how I felt as a 15-year-old boy laying in a hospital bed for two weeks, desperately trying to get my head round what has happened, what will happen and what kind of life I might lead in the future – well, it all seems a very long time ago. That teenager in the old Norfolk & Norwich hospital in 1999 had a central venous catheter sticking out of the join between his neck and shoulder, tubes coming out of the side of his stomach and two parents who were scared. Very scared, partly because I had become so ill in the first instance, but also because they didn’t know what to expect. None of us did. It was like a foreign language – dialysis, plasma exchanges, blood transfusions, creatinine, potassium, phosphate…all the things about which I now know almost everything there is to know about was all completely alien and, at some points, overwhelming in ’99.

Today, I don’t think there is anything I don’t know about dialysis. I want to go back and tell that boy that it’s alright. It’s going to be alright. There will be some horrible days where you won’t feel like getting out of bed, and there will be times when every movement your body makes feels like your insides are filled with battery acid.

But…it’s really alright.

Training days

Posted by RenalLife on February 8, 2013
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My dialysis has increased over the past two weeks. Instead of 12 hours per week, I have been forced to be on the machine for 15. But it’s all for a good reason. I have been undertaking home dialysis training at the Renal Unit as I prepare to begin treating myself. To get me in the mindset of having home haemodialysis (and also to make sure I know exactly what I’m doing) I have been going in every day, Monday to Friday, for three-hour sessions, first thing in the morning.

Home-dialysis training at the hospital

Home-dialysis training at the hospital

The training began with me being talked through each step of the preparation process. For the best part of the last 14 years I have become accustomed to the dialysis machines; how they look, how they sound…but not particularly how they work. I know what each part of the machine does, but when it comes to putting it all together and making sure it all works, then I’m way out of my depth. I’ve only ever been a patient who would stroll into the Renal Unit, take my place on the bed and wait for the staff to connect me to the machine.

But now, it’s down to me.

I had already been shown how to cannulate myself, so the access for home haemodialysis wasn’t going to be a problem…or so I thought. During the second day of training, my venous needle – which is the needle that shoots the cleaned, dialysed blood back into my arm – was a little uncomfortable. It’s never totally comfortable having two needles measuring just short of two inches in your arm for three hours, but this one didn’t feel quite right. Usually if there is a problem with one of the needles, it will be reflected in the pressure monitor on the machine alarming and a soreness developing in my arm where the needle sits. The pressure readings were OK, and so I wasn’t too worried. But later that night and the next day the site where the needle went in was swollen and sore. To give that site a rest and allow the soreness and swelling to go down, Judy – the Sister at the Renal Unit who takes care of all the Home Haemodialysis patients – suggested that we try an alternative site for the venous needle. I was expecting her to decide where we were going to go, and also for her to put the needle in, but she soon informed me that I would be the one doing it. The nerves soon rose and the shakes began…I had never needled myself in a fresh site before; the only previous occasions I had put my own needles in were in ‘buttonholes’, which are already established sites where the needle, theoretically, just slides into the hole. As I took hold of the needle, my shakes got marginally worse as I was anticipating the sharp sting of the needle piercing my skin. Judy had told me that patients who needle themselves experience less pain, something which I was dubious about. But it’s true. I think it must be the thought of someone else coming towards you with a needle that makes the body tense up and the brain scream “THIS IS GOING TO HURT!”, but I was pleasantly surprised that by putting the needle into the fresh, new site myself, there was hardly any pain to speak of. It still stung a bit, and it’s not something I look forward to doing, but it was nowhere near as uncomfortable or horrific as I was expecting.

A side effect of a blown fistula

A side effect of a blown fistula

Everything was going so well, both needles lodged safely in my arm, pressure readings perfect, new needle site performing excellently…until I committed the cardinal sin of the fistula owning haemodiaylsis patient — I moved my arm. Only ever so slightly, but it was enough to cause my needle to blow. As the needle is sitting in my arm and pumping blood back into my fistula, it is held in place by three strips of micropore tape, each on around 8cm in length. Any movement in my arm can dislodge the needle as cause the tip to press against the inside wall of my fistula and cause swelling, an increase in pressure and – most of all – pain. It’s quite easily resolved by taking that needle out and putting another one in a different site, but the swelling and subsequent bruising is still visible as I type, nine days later, and it’s best to leave the site well alone until it recovers. This whole episode meant I had to find another new site to needle, resulting in four separate needle sites on my fistula. Thankfully, and after guidance from Judy, I managed to get the new needle in again without  any problems and so far it’s been fine. Having problems with needling the fistula is common and it was the one thing I was really concerned about. I can get used to running the machine and I’ll soon become accustomed to setting everything up, dealing with alarms and making sure my treatment goes smoothly. But there’s something about plunging a pair of two-inch needles into my arm that I don’t think I’ll ever really get used to.

But that’s a small price to pay for not having to travel to the hospital every other day.

Media attention!

Posted by RenalLife on January 23, 2013
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Below is a story written about my unhealthy history and my plans for home haemodialysis, which appeared in our local newspaper and online last week. I wasn’t sure what angle the journalist was going to go for, but I think it turned out OK. And it’s a nice picture of me and my little family.

Click on the picture for the online article.

Me in the EDP

Me in the EDP

An operation is booked

Posted by RenalLife on August 31, 2012
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I’ve got an exciting date to add to my diary. I will be going under the knife on September 28th, although it isn’t the dialysis-ending operation I would like it to be, its a necessary procedure to save my bones from becoming weak.

The neck of Joe Brown

My beautiful neck will never be the same again.

I’ve mentioned is a previous post that my parathyroid gland is working too hard, causing the PTH level in my blood to spike upwards to a potentially-dangerous level of the high 180s. While this doesn’t result in any side effects in my day-to-day life, a prolonged high PTH level can result in the gland effectively drawing calcium from my bones, which in turn can cause them to become brittle and at more of a risk of fracturing. So the glands are to be removed at the end of the month in an operation which will last around an hour and a half  and could leave me with a permanent croaky voice (although the chances of that happening are very slim) and a delightful four inch scar across my neck.

Forutunately my beard-growing ability is rather spectacular so the resulting scar will be hidden most of the time, but I’m not really bothered anyway.

My consultants threatened the operation way back in 2006, before I got the call that Steve was available for me. Once I had the transplant, the pressure on the parathyroid gland was reduced and the PTH level returned to a more normal level. But now dialysis has resumed, the operation can’t be delayed any further.

In other news, I had a brief stay in hospital as result of an infection which I caught on dialysis. With about two hours of treatment remaining I began to feel a bit rough. Nothing unusual about that, as I usually feel a bit dodgy about half way through anyway as the fluid beuing removed from my body takes effect. My blood pressure dropped and I began to feel cold. So cold that I couldn’t stop shivering. For over two hours I had the shakes but my temperature was rising. The result was that  had caught an infection, likely to be a bug which was hanging around on my arm and entered my blood as the needles went it. It then spent a good couple of hours floating around my blood stream and manifested itself in raising my temperature to around 38.5° and giving me the shakes. I was pumped full of antibiotics and although I felt fine by later that afternoon (albeit shattered) the powers that be wanted to keep an eye on me and admit me to the hospital.

Things like catching bugs and infections are bound to happen, and seeing as my immune system is suppressed due to my kidney still being in, I am at risk of picking these kinds of things up. It’s all part of being a hospital-based dialysis patient. There are hundreds of millions of different kinds of bacteria and bugs floating around the air, and having two holes in my arm for four hours in a seemingly clean hospital ward raises the chances of infections occurring. All the more reason to push on with commencing home-dialysis.

On that note, I finally have a date set for the home renal team to come and assess our house. We’re not exactly sure on which room we’d prefer to have the machine set up in, its all down to what the assessors say. But I’m not particularly bothered, I’d have it in the garage if it meant not having to trek up to the hostpial three times a week. Home dialysis will mean having to insert my own needles; something which I’m a little nervous about. It’s only been the last three weeks or so that I’ve summoned the courage to watch the nurses at the hospital put them in. The needles themselves are about two inches long, and although they don’t hurt when they go in (years of being needled at the same site every other day have killed the nerve-endings at those sites) it still seems so unnatural. But that’s a small price to pay for the freedom of hospital treamtent and a relaxing of the fluid intake restrictions.

I will report back with the results of the home dialysis assessment, in the meantime keep those fingers crossed.

“I’m so tired, I haven’t slept a wink ..”

Posted by RenalLife on May 6, 2012
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There’s a big part of me that thinks I should be doing something worthwhile with the time I am held captive at the hospital for my dialysis. I have 11 hours and 15 minutes per week, every week, where I am forced to sit connected to a machine in order to live an almost normal life, and as much as I like the idea of using those long, boring minutes learning a language or reading the entire works of Shakespeare, the fact is that I just need to sleep. Not for the whole time I’m there, but just for a while.

Sleep seems to act as a kind of reset button for my body. If I don’t manage to shut my eyes at some point during treatment then I tend to feel pretty rough for the rest of the day afterwards. If I do sleep, however, then I usually feel fine once I’m finished – or as close to ‘fine’ as I or any other dialysis patient feels. Fatigue is a common side effect for haemodialysis patients, and the longer treatment goes on for then the worse the tiredness becomes. At the moment it’s OK, and being a father to two young boys, it’s nothing I’m not already accustomed to.

Saturday’s (May 5th) treatment was a sleepless affair. No matter what I tried, I just couldn’t drop off, and I knew the effect it would have on the rest of my day. The fact that my right arm was housing two rather large needles and has to stay as still as possible didn’t help matters, but usually during dialysis my eyes will gradually get heavier, and the next thing I know, I’m waking up. But Saturday was different, and for the rest of the day I was playing catchup.

Further developments in a potential future transplant have arisen, with both disappointing and promising news. My brother, Justin, does not have a blood type that is compatible with mine, which unfortunately rules him out of donating. But on a more positive note, I have received confirmation from my brother-in-law that his blood group does match mine and he is very keen to press ahead with the process. It’s still very early days, but so far I haven’t been able to put him off, which is encouraging. I’ll keep you updated.

The longer I spend on dialysis, the more certain I am that transplantation is the way forward. I’ve made Hollie promise me than when I do have another transplant – whenever that may be – that she will always remind me of how rubbish and limiting it is being on dialysis. I’ve always tried to put a positive spin on everything in the past, but there is little to think positively about being a renal patient.

At least the weather is nice ..

“I’ll give you one of mine ..”

Posted by RenalLife on April 15, 2012
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Since I broke the news to friends and family – via this blog mostly – that I needed to go back onto dialysis again, I have been inundated with offers of potential kidneys. I completely understand that 99.9% of these offers are not serious, but it still warms my heart that people are kind enough to offer, even if their tongues are firmly pressed into their cheek. The quick comment at the end of my explanation of what dialysis is, what it does or how it works of “I’ll give you one of mine” never fails to make me smile. If you were one of the people who have said this or something similar to me in recent weeks, then thank you, your sentiment is not lost on me. But I would be interested to see how the conversation would have progressed had I pushed the issue, by replying “Excellent, what’s your blood group? Here’s the Transplant Coordinator’s number, see you at the hospital on Monday.”, or something along those lines. I do know that two people who have offered their delicious, plump, ripe kidneys for possible donation are very serious about going through with it. My little wife Hollie is very keen to be tested, and so far we’ve discovered that we have are the same blood group, which is a good start. In all honestly I don’t think Hollie would be able to donate a kidney to me, not yet anyway.

Four lovely kidneys in there somewhere ..

Four lovely kidneys in there somewhere ..

Although donating an organ is a much less invasive operation than it used to be, the donor has to be laid up at home for around 6 weeks, hardly lifting a finger – literally. With two young boys at home and with both of us being off work for a few months while we recover from the operation, it’s just not feasible. Maybe when the boys are older, and if the need for another transplant arises in the future we’ll look at it again. For now, she’s just an incubator. Rickie and Freddie had better take care of their kidneys too; I’ve got my eye on those!

The other potential donor to have come forward with serious intentions is my older brother, Justin. In fact, he said I could have both of his, but I suspect he may have been joking. He has had a blood test to determine his blood type, and is waiting for the results. As he is my half-brother it makes the chances of us being a good match less likely than if we were full blood brothers, but we’ll see. If it turns out that we are a good match, more discussions are needed before we take any more steps, but the fact he’s gone this far into seeing if he can give me a kidney means the absolute world. Top work, bruv.

In the meantime, the haemodialysis continues apace. Three mornings a week, every week for just under four hours. I’m waiting to see whether it might be possible to have a machine installed at home, as this would mean that the treatment has even less of an impact on my life. No making the 30 mile round trip to the hospital, no mornings lost to a ward side-room and no impact whatsoever on my working life. If it is possible for me to dialyse at home instead then it would mean that rather than having 12 hours of dialysis per week over three days, I could dialyse myself at home for just two hours per night, but over six days a week. As I would be dialysing almost every day, the toxins in my blood would have less time to build up and I would generally feel better in myself – not that I feel particularly bad at present. Also, the dietary and fluid restrictions are a lot more relaxed as I would be having treatment more often. There’s a lot to think about and the initial disruption to the house could be quite dramatic but in the long-term its something that I definitely want to consider.

That’s the goal at the moment; to explore the possibility of home haemodialysis. The ultimate goal, of course, as always .. is no dialysis at all.

**For more information about organ donation and to sign up to the donor register, click here.**

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.