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

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.

*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.

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

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.

Click on the picture for the online article.

Me in the EDP

Basically, it’s not happening. Alex had a test to determine how well his remaining kidney will work once he’s given me his other one. It turns out that the level of function he will be left with isn’t quite what the consultants would like. And considering his age and the fact he has two young children, it’s been called off. Which on one hand is disappointing – I would have loved a transplant and full kidney function, freedom from the Renal Unit and a restriction-free diet – but it also means that I can push ahead with getting a haemodialysis machine installed at home, which as far as I’m concerned is the next best thing to having a transplant. As much as I enjoy travelling to the hospital every other day (!), I’d much rather not bother.

All my own work

In preparation for having dialysis at home, I have recently begun training to learn how to put the dialysis needles into my fistula myself. I count this as quite an achievement, as for the first few months of being back on dialysis I couldn’t even look at my arm while the Renal Unit staff did it. Even if I wasn’t hoping to dialyse myself at home, I think it’s still an advantage to be able to self-cannulate. It certainly saves me hanging around waiting for the staff to come and do it for me, and every minute I’m in that place makes me hate it slightly more.

The next step is the building work which will have to be taken out on our house, and then the room renovation and machine installation can be scheduled. I’ve been told it could be as soon as the end of February, which will be great. It’s a goal to aim for and a deadline to meet. Once it’s in I can dialyse when I want, more often and for less time, therefore reducing the effect of having a build-up of toxins floating around my body in between sessions. I’ll also be able to work more, sleep better and spend time with my family. But above all of that, not having to go to the hospital three times a week will be the greatest advantage.

Bring it on.

I was second on the theatre list, so I had a bit of a wait until I was called to change into what I consider to be one of the most unflattering garments ever: the hospital gown. In case you’re not familiar with these things, they are basically a sheet that you put your arms through and tie together at the back. Underpantless, of course. I spared my fellow patients and hospital staff the pleasure of seeing the famed Joe Brown posterior by holding the gap at the back together as I returned to the waiting area.

After a couple of blood pressure checks and being asked the same questions three times (Do you have any allergies? Any metalwork from previous operations? Any false teeth? “No, I’m 28″) I walked through to the operating theatre complete with fetching green stockings and my Next slippers, and onto the bed which would house me during the operation. I had a cannula inserted and after a few deep breaths of oxygen, the anaesthetist told me to think of a lovely day I’d recently had..a walk on a North Norfolk beach, he suggested. But, naturally whenever I think of a perfect way to spend a day, my mind immediately seems to drift to sitting in my pyjamas with my two little boys, and Hollie of course, at home.

As I thought about my very own utopia of a lazy Browns house day, watching DVDs and eating snack food, I slowly drifted off into a deep, hazy sleep. Anaesthesia is a wonderful thing..

The next thing I know, I’m being woken up by Janette, a very friendly (I’m yet to experience any other kind) nurse in the recovery room. Apart from feeling sleepy from the anaesthetic and a slight sore throat, I have no further side effects whatsoever. And I also have a cool neck wound to show for my efforts. I’m still undecided on what to tell Rickie and Freddie about how I got it. Shark bite perhaps? Hmmm, could be tricky as its just a little line. Maybe a scratch from the claw of a Lion? Much more rock and roll than “Daddy had a parathyroidectomy”.

I’ll have to give that some more thought.

And so here I am on the ward waiting for the Doctor to see me and give me the green light to go home. Having not been able to eat or drink since midnight, the cup of tea with the standard two sugars which was offered to me on my arrival to the ward has never tasted sweeter!

I think I’ll go for the Lion’s claw swipe.

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.

But, alas, I do now have news! Some good, some indifferent so reading hats on..

I’ll start with the news that I received from Mandy, the Transplant Co-Ordinator at the Norfolk & Norwich hospital. I mentioned in a previous post that Alex and I had an appointment to meet with her to discuss what was going to happen with regards to him donating a kidney to me and the processes and tests we’ll need to undertake. Following on from this discussion, Alex had numerous bottles of blood taken and sent off to test our compatibility, and the results have come back .. and its good news. We are compatible, and so we can push ahead with the further required tests. Alex’s blood contains the same type of antibodies which were present in my previous two transplanted organs, which is good news in the fact that we know that my body can accept them. Now we know that we are compatible, it’s a question of just how compatible we are. More blood tests will determine that and depending on the outcome the doctors in Cambridge will ultimately decide on whether or not it’s worth going ahead with the operation.

So that’s the good news, we’re still on for a living related donor transplant from my brother-in-law. Very encouraging.

The perhaps not-so-good news is that it’s looking increasingly likely that I’m going to have to have an operation on my neck to remove my parathyroid gland. This is a selection of glands just behind the thyroid gland in the neck which controls the levels of calcium in the blood. The usual range of PTH in a renal patients blood - the indication of how the gland is working – is usually between 20 and 35. My latest reading was 192, which basically means the gland is sucking all of the calcium out of my blood and bones. If left to its own devices at that kind of level for a sustained period of time then it could mean that my bones become brittle and I may develop some osteoporosis, which is something nobody wants. There are two options available to me; either try to control the PTH level with medication or whip them out in a small op. My consultant explained to me that he had never seen a PTH level as high as mine recover to within normal parameters with medication, and so the only option really available to me is the operation. I think in a way I’d prefer to just get rid of them, that way I’d know that the problem is gone and dealt with and I can forget about it. The wait for the operation is around two to three months, so I’ve got a bit of time to steel myself for a nice little scar along my neckline. Yummy.

In the meantime my dialysis has been continuing thrice weekly for four hours, and I’m relieved to say that the after effects I’ve mentioned in my previous posts have been extremely minimal. The fact that I’m feeling fine after each treatment now is good, but it’s  somewhat depressing that I’ve slipped back into the routine of being a dialysis patient again so easily. Can’t have everything I suppose.

Since my last blog there have been some developments in both of my goals for ending hospital dialysis – home treatment and transplantation – with cause for optimism. I had a brief discussion at the Jack Pryor Unit with the nurse who oversees all the home-dialysis patients, and she told me that I am a good candidate to have a machine installed at home. Good access for dialysis is imperative, and as my fistula is in great shape I’ve ticked that box already. Somebody to keep an eye on me while I’m dialysing is important too, just incase I start flaking out while I’m on there, and fortunately I have a lovely wife to do that for me. Tick. Space at home is also taken into account, not just the space the machine will take up, but room to store all of the accompanying bits and pieces needed to dialyse myself; needles, tubing, acid, medications etc – it all needs to go somewhere. I have an idea of which room I’d ideally like to use for the home haemodialysis, but when we have a visit for the house to be assessed, that might change. There is some significant plumbing work that will need to be carried out on the house before things get set up, and although we won’t have to pay for it, it’s still going to be quite an upheaval. Lots of things to consider but the benefits of dialysing more often at home greatly outweigh the drawbacks.

I have a meeting with the Transplant Co-Ordinator on Wednesday 23rd May, along with Alex, my brother-in-law who I have previously mentioned is keen to donate a kidney. I think it’s going to be an informal chat about what kind of tests they’ll need to undertake to test our compatibility and the process of donating an organ, but the scheduling of the meeting alone is a great start. Although I’m starting to feel fine after treatment at the moment, I can’t help thinking about how much I’m going to enjoy not having dialysis again. It’s not the worst thing in the world, but when the day finally comes that I don’t have to dialyse anymore, I’ve promised myself, and my family, not to take anything for granted.

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 ..

Following my session on Saturday (April 21st) I felt truly washed out, for the first time since I started again. It’s difficult to put into words exactly how that feels to someone who hasn’t had dialysis, but I’ll try..

First and foremost, my eyes seemed to take a couple of seconds to catch up with the direction my head was pointing, and if i turned my head too quickly a dull ache would soon rain down across the top of my head and over my eyes. I described this to Hollie as a ‘Renal headache’, as I’ve only ever felt it post-dialysis. Paracetamol doesn’t seem to shift it. My body seemed to complain about every movement I made, most probably because I was forcing it to actually move again after four hours of being still. I felt like my blood was surging around my body – it wasn’t, my pulse and blood pressure were both fine, but it felt as if it was in a rush. This made me feel restless but every time I moved an ache would shoot through my head and I’d have to just stay still, eyes closed, until it calmed down. And then, albeit to a lesser extent, muscle cramps would occur, a result of excess fluid being removed from my body during treatment.

Thankfully these side effects only tend to occur for a couple of hours and they are a part of dialysis that I was expecting, but also dreading. Dialysis itself may only last for four hours a time, but thinking about it never stops. I’ve mentioned before that I have found the fluid restriction the toughest part of haemodialysis in the past and that hasn’t changed this time around. I’m forever calculating how much I’ve had to drink, estimating how much fluid a glass or mug holds and trying to work out if I’m ‘allowed’ to have something to drink. And the more I tell myself ‘No’, the more my mouth feels like a desert.

As the days, weeks and treatments pass I am increasingly grateful for the five and a half years I had my working transplant for, and for all I did while I had it. The freedom from just not having to sit on machine, without taking into account the diet, fluid restriction and the side effects I’ve started to mention above, is priceless. I’ve heard people say that transplants save lives, and while that may be true I like to think of it more that they give life back to the recipients. If you’re reading this and you are not registered as an organ donor, then ask yourself why. I’ve experienced kidney problems for 13 years, and I am yet to hear a convincing argument against organ donation.

**To sign up to the donor register, click here.**