An Inpatient Man (Part 1)

You may have noticed that it’s been a long some time since I last posted. In part, this is due to a lengthy and unexpected admission to hospital in July, leading to my second Cardiac Ablation in 12 months. In greater part, the silence is due the time it’s taken me to organise my thoughts on the subject I wish to write about and get myself motivated (Thank you Mrs. Skwerg and Dr. Nashat for the encouragement!).

The stay in hospital has, in fact, provided the subject – hospitals, my experience of them and hopefully some words of, if not wisdom, at least useful advice. It’s a big topic and will require several posts and along the way I’ll reference my “Rules” of being a good patient. Think of them as soundbites of advice. Lest I confuse, they don’t crop up in order. Rather, when a rule is illustrated by a passage I’ll mention the relevant rule. You can see the list of rules here.

I’m going to let you into a secret. I really don’t mind going to hospital.

Just to clarify, it is not that I enjoy hospital so much I want to have an arrhythmia so I can visit, but rather that when I am there, I’m used to the environment and I don’t find it intimidating. Despite my positivity about hospital, my wife points out that, after a couple of days, even I get grumpy, in a Victor Meldrew sort of way.

I think there are two significant reasons for my positive attitude to hospital.

Oxygen Tent with Premature baby
An Oxygen Tent – though that’s not me in the tent!

Most important is simply the amount of time I have spent in hospital. Hospitals have been my second home pretty much from the moment I was born. I spent at least the first 6 months of my life in hospital. My first memory is of someone (I’ve no idea who) unzipping a clear plastic tent and reaching in for me. It’s not a clear memory by any means but I have always assumed it’s someone opening an oxygen tent.

I continued to spend much of my childhood in and out of hospital, and have particularly fond memories of the Westminster Children’s Hospital. (Now gone, proof that the destruction of the NHS was already underway many years ago.) I watched my first Bond movie there (“Diamonds are Forever”) and ran (well, moved slowly) up and down the ward corridor when playing StarWars™ with other children (imagining I was Han Solo of course). There always seemed to be ice-cream and jelly available for pudding and I developed a lifelong love of Crusha Milkshake there. There was also an amazing grey rocking horse and many Richard Scarry books in the waiting room that made an outpatient visit so much more tolerable.

Through my teens my visits became less frequent and were more often outpatient visits. Through my twenties and thirties, I had only outpatient visits to monitor my condition. (Except for a single abortive attempt to insert a Stent.) Now, as I get older, the inpatient stays are returning with a seemingly ever greater frequency as my condition progresses. They’re nothing like as frequent as when I was a child, but the point is I go to hospital a lot, and I go to a lot of hospitals (but more of that later).

The other reason for my positive attitude is perhaps a rather more unsavoury character trait – I quite like the attention. Being a complicated patient is one of the few things I excel at (it doesn’t require much effort – at least, not on my part) and a trip to hospital always seems to involve meeting people who find me interesting. (Now I’m older I realise it’s purely a professional interest, much in the way an engineer will find a complex machine interesting.) As a child, longer stays in hospital meant visits from friends and family. On at least one occasion I received letters from all my classmates at the time (Thank you all, where ever you are now – they had more of an impact than you may have realised). If I underwent an operation, I often received a gift on recovering consciousness (which encouraged among other things a love of Asterix and 1980s Space Lego). Overall, hospital as a child was as far as I recall, quite enjoyable. All the pain and nasty bits that must have occurred, I was either asleep for (thank-you general anaesthetics!) or they have faded from my memory with the passage of time. Hence, I have a reasonably positive attitude to hospitals in my adult years.

Confessionals aside, I feel I’m in a strong position to talk about hospitals given the number I’ve been to. A quick mental tally puts it at around nine throughout my life (though it feels like more) – three in the last year. Mrs Skwerg jokes (At least I think it’s a joke) that I collect hospitals, and that I should do a “Michelin Guide” style gazetteer of them.

Beside my familiarity with hospitals, a couple of things recently have made me realise that sharing my experiences of hospitals may help people.

The first occurred last July. A fellow patient across the way was clearly frustrated with his situation and the medical professionals treating him. Now I can’t claim to know his true situation, but it appeared to me that he had come in as an emergency and had been waiting some days for a diagnostic test. In the meantime, he wasn’t being allowed home, despite him feeling well. His regular complaint was “I’ve got things to do! Can’t you just give me a day and I’ll come back then?”.

The second was a comment from Mrs Skwerg, herself a health care professional. She couldn’t comprehend how anyone not intimately involved in the NHS ever manages to navigate its labyrinthine corridors, given the difficulty even she and her colleagues have doing so, despite working for the institution.

The more I considered my fellow patient’s anxiety and Mrs Skwergs’ comment I thought that perhaps I could write something about what people could expect when they went to hospital. Whilst there are many sources of information about the topic on the internet, the ones I examined seemed a touch clinical – lots of information on what to bring, who you’ll see and what will happen, but very little on the actual experience. I hope I can bring a slightly more personal perspective to the sources.

I just want to highlight that I am not an expert on navigating the NHS – I’m dependent on Mrs Skwerg in that area to be honest, and even with her help it can prove a challenge. I hope that telling people about what I’ve experienced may help them should they require the care of our superb National Health Service.

Let’s start at the doorway with getting to hospital. Not in a geographical way but in terms of how one’s visit may be initiated. Hospital visits come in three varieties:

  • Outpatient appointments
  • Inpatient admissions
  • Daycase admissions

A visit to A&E, rather than being a category in its own right, is a kind of outpatient appointment. But it can quickly turn into an inpatient admission should the patient’s condition warrant it.

An outpatient appointment is much like a trip to your GP. It is a short appointment to a clinic that doesn’t involve an overnight stay. It allows for a doctor to assess your condition, so sometimes the appointment consists only of performing a diagnostic test which can’t be done at a GP Surgery (such as an Echocardiogram, X-ray, MRI scan or Lung function tests) but often as not one gets to see a doctor to discuss one’s condition. Most of my visits are outpatient appointments. At one time, I only went once a year, I think just to check I was still alive. I always thought of it as my yearly M.o.T. As my condition has progressed, the specialists have needed to keep closer tabs on me. I’m having an exciting life at the moment, so currently each of my main consultants want to see me around once every three to six months. I see several different specialists including Electrocardiologists, Pulmonary specialist and Congenital Cardiologists. The clinics never run on the same day, so each specialist requires a separate trip. Then there are the more general specialties who I can see at our local hospital (currently Rheumatology, Lung Function, Gastro, Ophthalmology, Cardiology and ENT) who call me in as and when necessary. It’s fair to say it’s an unusual month when I don’t have at least one outpatient appointment to see some specialist or another.

The most important thing to take to your outpatient appointment is a good book. You will spend much of your visit waiting, even if you only see the doctor for ten minutes. It’s not because they don’t like you or aren’t organised. It’s just hospitals are very busy. For example, if a clinic plans to see twenty people on the day you visit and each appointment is ten minutes, that adds up to a clinic lasting three hours and twenty minutes. That is assuming all goes to plan. As soon as you have a patient who is only just returning from their ECG when called and takes a couple of minutes longer to get to the consultation room, needs fifteen minutes to examine instead of ten, or the doctor gets called to an emergency or to advise a colleague, the timing slips and the later appointments get later. To be fair, hospitals are getting far better at managing their queues, but expect to wait so take a book (or in these modern times a handheld device like a smartphone, tablet or kindle). This is an example of Rule #3: You’re going to be waiting, so make the most of it.

An inpatient admission involves an overnight (or longer) stay on a ward. There are two main ways I know of to initiate an inpatient stay. The good way, through what’s known as a planned admission is where one turns up to a specified ward at a specified time for a specified procedure. Alternatively, there is what’s termed an unplanned admission. Unplanned admissions are (in my experience) noisier, slightly more exciting (and I use that word in the medical sense) and sometimes involve flashing blue lights. They are also worse for your insurance premiums. An increasing number of my admissions seem to be unplanned.

An Unplanned Admission in progress
An Unplanned Admission in progress – though it’s not me in the ambulance!

A planned admission usually arises after seeing a consultant at an outpatient appointment. It maybe they need to do more complex tests that require an overnight stay or have decided the way forward in your treatment requires an operation or some other form of extended care. For example, I’ve had planned admissions when starting new medications where I need to be kept under observation for a night or two to ensure I have no adverse reactions to the new treatment.

 

Eventually you’ll receive a letter from the hospital asking you to attend a ward on a specific date. The letter will usually ask you to confirm the admission the day before it occurs. The reason for this is that it is a planned admission, not a guaranteed one. The space on the ward is allocated on the predicted demand for beds on the ward. If there are unexpected emergencies, or people take longer to recover than normal, the bed that it is planned for you to use, may not be available. It’s part of Rule #1: There’s always someone less well than you. So make sure you confirm your admission, else you may find yourself travelling home before you even reach the ward.

If you are really in need of admission the hospital will move mountains to get you in. Now the phrase “really in need” tends to be interpreted differently. I’m using it here to mean medical seriousness and urgency. You may need a biopsy, but the person whose appendix is about to burst is in greater need. Normally, planned admissions, whilst needed are rarely as urgent as unplanned ones. As to the efforts a hospital will go to when they feel you really need to be admitted right now – here’s an example from my personal experience. In July I arrived at a hospital A&E by ambulance. They decided that I needed to be admitted but there was no space immediately available on their cardiac ward. They ended up moving patients to other hospitals across town, and at one point were considering whether they could break their single sex ward policy to find me a bed (they decided they couldn’t). It took a long time and I had a bit of a wait (Rule #3) but I was found a place.

It’s entirely possible that in trying to find a bed for me someone, else’s planned admission may have been postponed for a while. I’ve been on both sides of this situation so I try never to get upset if a planned admission must be postponed – generally I’m just grateful that this time, I’m well enough to be “bumped”!

Daycase admissions are trips that require the facilities of a ward and possibly surgical theatre, but are for minor procedures that don’t necessitate an overnight stay. I have little experience of them as the complexity of my condition tends to lead to caution on the part of doctors, and an inpatient stay!

Having discussed the types of hospital trips in this part, next time I shall delve further into my experiences of A&E and the nature of life on the ward.

Until next time,

Skwerg.

Go Technology!

I was recently shown this article about the NHS using wearable and portable health technology. That combined with my own experiences over the last few weeks has inspired me to write a different post to the one I had intended to.
The full article is well worth reading. In summary it says the NHS is about to fast track approval of cheap portable ECG device. This device can help monitor a patient’s heart in the home (or out in the garden or in a coffee shop etc…). It is hoped that this will aid the prompt detection of serious problems and potentially save lives.
As it happens I have recent experience of sort of thing being talked about in the article, so I thought I’d give a patients perspective on what it is hoped the deployment of these devices will achieve.

A flowchart showing the steps in treating an arrythmia
A flowchart showing the steps in treating an arrhythmia (click to enlarge)

Currently in the NHS the process through which problems are detected and monitored are quite cumbersome and expensive. Here’s an example. When I was experiencing arrhythmia a couple of years ago or so, I went through the following process to get them sorted (See the handy flow chart for a more pictorial representation).

When I began having the episodes I raised them at clinic. I was given advice on managing the episodes, but essentially was told that until there was some data to work from there was little that could be done. I was given increasingly long duration ECGs (between 2 to 7 days each.) to get a baseline and if we were lucky, capture something happening, but they revealed little.

I had several more arrhythmia episodes, and as we discussed them with the consultants in the Royal Brompton they became increasingly concerned that these could be a serious issue, and advised that should I experience them in future I should go to A&E as quickly as possible for medical intervention.
Each time I had an episode the arrhythmia would self terminate by the time I was at a medical centre where an ECG could be taken. This meant I was unable to collect the necessary information to progress the diagnosis. Whilst it was good that they terminated without medical intervention it left me having to roll the dice again each time it happened.
I could have been given more long duration ECGs, but this has its own difficulties.
Firstly my arrhythmia were infrequent enough that even the longest ECG couldn’t guarantee catching an episode.
Secondly I am not local to the Royal Brompton, so setting up one of these diagnostic ECGs would involve me making a long journey to have it fitted and a similarly long journey home. I would then have to return the device by post when the recording finished.
Alternatively it requires cooperation among hospitals. The Royal Brompton would engage my local hospital to perform the test and pass them the results. The current fashion for an internal market place in healthcare makes this very difficult because of the tortuous beaurocratic navigation required to make sure the money is spent out of the correct organisation’s pot of money. In the end it’s inconvenient and expensive for someone.

A variety of portable ECG recorders and the analysis Software. Gone are the days of something looking like an oversized Sony Walkman Cassette player (bottom left) with a record function!
A variety of portable ECG recorders and the analysis Software. Gone are the days of something looking like an oversized Sony Walkman Cassette player (bottom left) with a record function!

There is also a resource element. A portable ECG recorder for these sorts of tests can be found on Google starting around £1500-£2000 and that’s before buying the software and computer needed to analyse the recordings. Sure, hospitals may manage to negotiate deals with the suppliers, but they are still expensive pieces of equipment which are given to the care of notoriously careless patients and often the postal system. As a result there is invariably a waiting list (though rarely long in my experience) because the hospitals do not have many of the devices.

Eventually I got “lucky” and by “lucky”, I mean I had an arrhythmia that lasted longer than usual and was still in progress when I arrived at my local A&E. Whilst waiting to be seen I turned greyer than usual and felt like I’d just been made to run a couple of marathons on the trot. That got me seen quite quickly (Queue jumping super power – Go!) by a somewhat nervous A&E doctor (Nervous because I’m likely to have been one of the more complicated cases in his shift; possibly his career to date, depending upon how smug I’m feeling about my condition. The opportunities for things to go horribly wrong with me were significant). Fortunately the arrhythmia terminated of its own accord as he was obtaining the drug to Cardiovert me. We were both very relieved. The real score though was a nice clear ECG of what was going on in my heart at the time.

The ECG was sent to the Electrophysiologists at the Royal Brompton. Now having the data they needed they were able to schedule me for some space age heart surgery in the form of a procedure called a Cardiac Ablation (subsequently described by the surgeon who performed it as “adventurous”!).
Now all this took well over a year – possibly two or three years (I’m afraid my time line memory isn’t brilliant) – from me first raising the issue in clinic through to the Ablation procedure. That’s time where, had things gone differently I may have hit serious – even for me – medical problems, ranging from fainting or blacking out to strokes and embolisms. Arrhythmia are part and parcel of my condition, so the real issue is not so much how to stop them happening, as how do we obtain the data quickly enough to take corrective action?
This is where the article at the start of the post comes in.
You may recall that in a previous post I mentioned I had invested in an AliveCor ECG device. It’s exactly this type device that the article is talking about and recently I have had the opportunity to put mine through it’s paces. Incidentally  AliveCor is a brand name and though I use it throughout this article, I’m not sponsored by them nor have I anything to gain from using the name. It’s simply the brand I have because that was what I was shown by my consultant – there may well be other similar devices available that perform just as admirably.
In the past few weeks I have been experiencing increasingly frequent arrhythmia episodes. Much as before the episodes have tended to last only a short time, ending before I can get to a health centre of any kind.
This time however I had my own little mobile ECG recorder. Each time I had an episode I would take it out and record what was going on. Often I would also record myself when the episode finished to get a before and after view.
During this time I had been in contact with the Royal Brompton, receiving advice on managing the episodes with an intention to follow up in Clinic later in the year.
Eventually on a day I had experienced three or four episodes I rang in and spoke the Arrhythmia specialist nurse. The discussion turned to the mobile ECG recordings I had taken and proceeded something like:

“Excellent! Do you still have the recordings?“
“Yes.”
“Can you email them to me? I’ll get the consultant to have a look at them.”
“Of course. You’ll have them by this evening. ”

As I indicated, I then emailed them the 15 or so ECG recordings I had taken in the past couple of weeks. That was on the Friday. On Monday I had an email saying that the consultant felt I needed another ablation and would I like to go on the list for one, or would I prefer an outpatients appointment first?
In essence the AliveCor ECG compressed many months of diagnosis and testing into a few weeks.
As it happened I didn’t get to go through the full cycle of diagnosis and action. I was hospitalised by a serious arrhythmia a few days later (and will be having an ablation somewhat sooner than expected!). Even during the episode that hospitalised me the AliveCor ECG proved it’s worth to my mind. I was able to track what was happening and show it to the paramedics when they arrived, giving them more information to help make their decisions.
I have no doubt that over the last few weeks I have been using the AliveCor just the way envisioned by the NHS in the article. At a tenth of the price of a full portable ECG recorder they’re a financially attractive diagnosis tool for the health service. They can be available to gather data when needed, reducing the need to trawl through hours of data from a more traditional monitor. They can also provide reassurance, of a sort. Having the device with you makes you less worried about what’s happening – at least it does for me – and gives a feeling of empowerment and control over ones condition. I don’t have to simply endure it and get someone to help, I can take action and be involved in my own care.
They have their limitations though.
They can only capture events if the patient is aware of them to record them. If an arrhythmia occurs whilst sleeping for example it won’t be recorded, where a portable ECG would capture it.
The patient has to be able to use the device. Unlike a portable ECG recorder, which sits passively recording, the user of an AliveCor ECG must possess and be able to operate a compatible phone/tablet to activate the device, and some of those needing the device may be less confident with such technology but as generations roll on that will be less of an issue.
Perhaps the bigger issue is the limitations of what the device records. An AliveCor ECG is what is described as a ‘two lead’ ECG meaning there are two contacts on the patients skin picking up electrical signals when recording. A portable ECG recorder is likely to have more leads (often 5 or 7), collecting a more detailed set of information. One advantage the AliveCor has though is that it will take voice recordings as it takes the ECG, allowing symptoms to be described giving an extra dimension to the information that the traditional recorders lack or must obtained through pen and paper notes made by the patient.
The level of detail available on the AliveCor type devices may change as things develop. Approval by health organisations such as the NHS may well encourage companies to improve the devices as the market opens up further.
Despite the issues discussed above, I really hope the devices are approved for use, as I think they will prove a useful tool for many people dealing with heart conditions on a daily basis.

And of course, like fezzes, they are very cool…

Until next time,
Skwerg

The Weighting Game – A reduced salt lifestyle

Last weekend I had a McDonald’s breakfast (a Double Sausage & Egg McMuffin meal and an extra Hash Brown, in case you were wondering). That may not seem any great news, but I’ve not had one for a long time now and I love a McDonalds Breakfast.

A McDonalds Breakfast
Nom, Nom, Nom… And No! No! No! (Oh, go on then…)

The immediate cause of my orgy was because my weight had dropped to under 62 kilograms. This may illicit the questions “why are you trying to lose weight?” and “is a meal packed full of grease and processed meat really the appropriate way to mark the occasion? Surely a lettuce leaf would suffice?”.

All valid questions, however I’m not trying to lose weight particularly. I have never been a particularly heavy person by any measure. I think “scrawny” may be the right description – all elbows and ribs. Weight loss has never been the primary goal of my dietary shenanigans, though a slight obsessive nature may have made it more prominent than strictly required.

What I’m getting at is I wasn’t trying to lose weight as you might if you had a few too many chocolates over Easter. In fact, I’m at a healthy (just) weight for my height according to this NHS chart. I watch my weight not to lose it, but rather to maintain it, and have done ever since I went into Congestive Heart Failure in August 2013.

I’m going to talk more about my experiences around that time in a future post, but for now, it’s sufficient to say it was a life changing event and I came out of it taking diuretics. The diuretics are to stop me retaining fluid, which is both a sign of, and exacerbates, Heart Failure. With fluid retention comes, rather unsurprisingly, weight gain. I use the deeply untechnical term “Swelling up and Dying” to describe this. By monitoring changes in my weight and checking for ankle swelling one can get an early warning of the onset of heart failure. Appropriate action can then be taken and a repeat of my 2013 trip to hospital avoided.

So every day I weigh myself.

I use the same set of scales to ensure I get a consistent measurement because without being properly calibrated any two set of scales are likely to be reading different weights. I also take my weight unclothed (It’s OK, I won’t add pictures!) I also aim to weigh myself at the same general time each day – not so much clock time, though it tends towards that but rather what I think of as biorhythm time. i.e. I weigh myself after waking up and before I eat or drink. Fortunately for me, I’m not that interested in the exact numbers, just the amount they change day to day so providing I stick with the same set of scales, I should be good.

The weighing can get a bit more difficult if I go away, especially for extended periods (and on a ship it gets really tricky!) For the most part on those occasions I just skip the day’s weigh-in and rely on other indicators (whether I can get my socks over my ankles for example…) as to whether I am heading towards problems.

The weighing is all well and good, and produces a lovely graph (when you don’t lose all the data updating your phone, as I did a week ago…) but it is just monitoring. The real work goes into controlling the weight in the first place.

When I began taking the diuretics back in December 2013, I began to notice that certain foods seemed to cause my weight to go up quite rapidly in conjunction with water retention (I hadn’t simply been eating ALL the pies, as is my wont). It was pretty clear that the common factor was salt.

Excessive quantities of salt have long been known to be bad for the heart, however some salt is vital for good health. An adults GDA of salt is 6g. My diet at the time was fairly heavy on the salt (I never added any to my food but my food choices were, to say the least, poor in that respect).

While the medical professionals I see didn’t instruct me to reduce my salt intake, I began to reduce the salt in my diet. In fact, I aimed to eat a low salt diet, keeping to around 2g of salt a day. It has been seen as a generally prudent move by the aforementioned professionals. I don’t always – probably don’t often – manage to keep to that little, however I have certainly reduced my salt intake by (I reckon) at least half. Over the last couple of years, my diet has changed, and I’ve made a few discoveries.

The first discovery was just how much salt there is in the food we buy. Sure, there are some obvious foods to avoid – Bacon and Cheese (I love bacon and cheese!) but there are many unlikely containers of Salt – and not just there’s a bit of salt but amounts that seem designed to make keeping to the GDA, let alone a 2g limit almost impossible. For example, a slice of bread typically contains around 0.4g of salt. A quick sandwich (2 slices of bread with something in between) or a couple of slices of toast (even without Marmite, which I rather like) is for me almost half my day’s salt intake. Similarly, a 125g pot yoghurt contains around 0.2g. And it’s not just foods. Many fizzy drinks (Typically – and you may spot a theme developing here – the ones I drink by preference) contain 0.1-0.2g per 100ml. Distressingly, beer can be quite salty too, with a can containing between 0.3g and 0.5g. Chocolate contains 0.2g per 100g. I have not investigated the salt in Scotch Whisky!

What I’m trying to show here, is the prevalence of salt in almost all the food we buy. Much of this is down to salt being a good preservative, and a fair portion is that it an important element in the taste of many things (Our early experiments in making salt free bread produced quite distressing results! Though we found the answer was to add alcohol.). The upshot of this it’s much harder for me to ‘snack’ the way I used to when I’m out of the house. Many premade foods are high in salt. In the past I’d think nothing of having a sandwich with my coffee in Costa Coffee for breakfast, or a pack of premade sandwiches, or a Sausage Roll if I were peckish. Alas no more. Whilst the high salt content is by and large down to the combination of ingredients in the item, I can’t help feeling that an egg & cress sandwich shouldn’t need to have over a gram of salt in it.

I’ve also discovered there are foods that I just have to avoid. I suppose that’s less a discovery and more a logical conclusion of watching my salt. Take away Pizza stopped when I found it had about 8g of salt in it. McDonalds when I looked up the nutritional information. Recently I felt I needed to stop having Chinese takeaway after a day of weight gain, tiredness and general sluggishness following one. Most recently I’ve decided to stop drinking Latte Coffees as I’ve found milk has a surprisingly high salt content (0.1g per 100g according to Wikipedia – and indeed the label on the carton in my fridge). Unfortunately for me there is a very high correlation between salt content and food I like to eat…

A selection of Nutrition Labels
A selection of Nutrition Labels

An important learning point was how nutritional labelling on food can be not actually inaccurate, but rather be somewhat obfuscating. I have developed the habit (obsession) of always reading the nutritional information label on a packet – partly because of the unexpected salt in food discussed above, but mainly so I can keep a running total of my salt intake.

Whist the labels are informative one has to check carefully what the information relates to. Rarely will a pizza tell you how much salt is in the whole pizza but rather ‘per slice’ or ‘half a pizza’. Sweets will be ‘per X sweets’. Fortunately, the values per 100g are nearly always available too, allowing a level of comparison. The danger is – for me at least – I don’t eat half a pizza, or 7 sweets, or one third of a pie – I tend to eat the lot.

I realise that I’ve just written several paragraphs of what might be termed whining. I’m very aware that compared to many others – diabetics, coeliacs and lactose-intolerant persons, I really don’t have much to complain about. I’m not even particularly hard done by in the salt realm – I know of one person who is unable to process any salt. In fact, when I look at it, much that is positive has come out of reducing my salt.

Obviously, not ‘Swelling up and Dying’ is a major bonus.

I probably eat much more healthily now. Simply by the necessity of cutting out much of the processed foods and takeaways, my diet has become better. As part of that I’ve discovered many things I like that I previously never really tried. Spinach for example, Quiche (but not of the Lorraine variety). Sure there’s still cheese in our cooking, but less of it. I’ve learnt to make (after a fashion) bread. I’ve tried making hummus (I need to give that another attempt). We make our own pizzas – still a treat with a big dose of my daily salt in it but better that any takeout one. We make our own Curry too – The purchase of a couple of cookery books and many spices has introduced a world of new flavours, and with far less salt. I’ve explored new flavours – I’ve moved from not eating particularly spicy food to actually seeing chilli as a flavouring to add taste to all sorts of things (I’m still not going to have a vindaloo though). Anyone who has eaten my cooking will realise I am not the culinary genius creating all these dishes. The credit there goes to my wife (Although a satisfactory low salt sausage recipe continues to elude her!).

Having reduced my salt intake, I notice it’s presence much more in other foods when I do eat out, often wondering why so much is needed (answer: we – the population – have become desensitised to its presence in our food).

The main thing I’ve learnt is that, like many things in life, managing my salt is about consequences. Having 6g of salt one day isn’t actually a problem but I have to accept that if I do that, I will retain fluid and over the next few days will need to manage that. So when I say I can’t eat something what I mean is the consequences are more than I am happy to deal with, but that doesn’t prevent me from eating them if I am happy to accept those consequences. Hence the McDonalds breakfast. I was happy that with my weight that low, I would be relatively unaffected by the extra fluid the salt may cause me to retain. Equally there are times that I just can’t manage my salt intake as effectively – usually if I am visiting friends or on holiday. At that point I have to rely on a combination of my growing knowledge of what is relatively salty, close monitoring of my ankles and my weight, and accepting that I may need a period of extreme desalination when it’s over to fix me..

I’m looking forward to my next McDonalds breakfast, but it won’t be for a while, and in the meantime, I’m afraid I’m going to be a fussy eater.

Until next time,

Skwerg.

Addendum

When I began this blog I was thinking of making the low salt aspect a significant part of the site. I wanted to be an information hub on salt in foods, with a searchable database of the salt content of various foods. I also planned a page with recipes that were either zero salt or tweaked to minimize the salt.

Since researching this post my initial plans are evolving. There is actually much more information out there on salt than I had thought, so I’m going to start by providing a page with links to various resources I’ve found. The recipes will stay and I’ll aim to put the first one up soon. I still want to do the database but I need to think about exactly what it will contain.

Skwerg.

Rhythm, and All That Jazz

I spent the early May Bank Holiday weekend in Hospital wired up to an ECG machine with my heart rhythm being monitored. On the Friday I had experienced a severe arrhythmia.

Whilst stays in Hospital and trips to A&E in particular, are always exciting and (in retrospect admittedly) entertaining – more on that in a future post – this was a bit of an upset as I was hoping the Cardiac Ablation I had undergone six months previously would have resolved things for a bit longer.

I had my first arrhythmia in my mid-teens; I think when I was fifteen, but my memory gets a little blurred now. What I do remember is waking up in the middle of the night with my heart pounding. Looking back, I suspect it was doing 150 to 200 beats a minute. That’s a lot, considering my resting heart-rate is around 70-75 beats per minute.

Not knowing what to do I lay in the dark for a while somewhat worried, before waking up my mother. I don’t remember doing anything to stop it – there was no ambulance called and after a while (probably an hour or two, going by subsequent occurrences) it stopped and my rhythm returned to normal.

Overall, as I recall, my response was to worry during the arrhythmia, then pretty much forget about it, once it had passed and no harm seemed done. It was probably mentioned to the consultant the next time we saw her. How times change!

My heart rhythm has always been… interesting. It’s pretty irregular with ectopic beats thrown in every now and again in for a bit of variety. One GP has described it as going two beats, a pause then two quick beats, as it tries to catch up.

Additionally, if you listen carefully (ideally with a stethoscope) you can hear a swooshing sound in the beat which is, I believe, the blood moving between the ventricles through the hole in my heart. At best, my rhythm has more of a jazz feel to it than a steady marching band beat. I often suspect this is the reason for my:

  • Dancing skills (mostly flailing and stumbling with occasional pauses to get my breath back),
  • Musical ability (it took me three years to complete the first year book for the violin – though that may have been, in part, due my lack of diligence at practicing!)
  • Complete inability to clap along in time! I’ll start of in sync with other people and then sort of, drift…

Unfortunately, I don’t think I can blame my singing voice on it.

To continue with the jazz metaphor, there’s also the improvised solos. Occasionally (not like every day though, or even every week) my heart will do a little run of rapid beats known as tachycardia, which I feel as palpitations, . If these runs are the short refrains, what I experienced on the Bank Holiday was a extended solo.

There are all sorts of arrhythmia, with different names describing the nature of the rhythm and the areas of the heart affected. Some of the more common ones are entertainingly demonstrated in this video…

I have, until recently, tended to suffer from attacks of Supra Ventricular Tachycardia, with the prolonged, rapid heartbeat described earlier as happened during my first attack. Every few years I would have one – and aside from the slight discomfort, there never seemed to be any harm from them. Invariably as soon as I went near a medical professional, the attack would end and I’d feel guilty for bothering them. I’d dutifully report the incident next time I was at the Royal Brompton, and then carry on. After one incident I was given a 24 Hour ECG and an episode of some sort was recorded. I was given some beta-blockers to regulate my rhythm, the Tachycardia were much reduced and all seemed well.

In the last couple of years, I experienced more frequent arrhythmias (Including one in the Antarctic, which got me confined to inside the ship – another story for another time). When I discussed them with the Cardiologist it provoked a somewhat more worrying reaction than on previous occasions. It turns out that the “no harm seemed done” attitude I had been taking was somewhere between lackadaisical and downright dangerous.

For most people, an arrhythmia of the sort I tend to experience is only a danger if they continue for a long while (and I believe we’re talking days here) as the heart gets exhausted from maintaining the rapid beat. Needless to say, for myself it’s a little more complicated.

First off, there’s the pressure. My blood pressure is low because of the various medications I’m on, but in certain arrhythmia the blood pressure can drop as the rapid beating means the chambers do not fill properly before they being emptied out. Most people’s bodies can deal with the reduced pressure and loss of efficiency that causes, but mine is at more risk. In one attack last year, after 2 hours I was grey and exhausted. A few months later I was in a similar position after about 10 minutes. A drop in blood pressure can also lead to dizziness, fainting, and blacking out – fortunately I’ve never experienced those.

Additionally, because of the non-standard blood flow in my heart, there are areas of little or no movement I’m in more danger of blood clots forming. In an arrhythmia the changing patterns of blood flow could result in a clot escaping and travelling round the body, potentially causing an embolism (Very not good).

So my instructions changed – no longer was I to sit and wait for the episode to finish of its own accord. If I experienced an arrhythmia that didn’t self-terminate in around 15 minutes, I was to call an ambulance and go to A&E with all haste.

The reason for this is that I was told that if I experienced a long lasting arrhythmia (more than a few hours), with my underlying condition it could prove lethal.  They even put it in a letter for me.

Instructions like that give one pause for thought. I subsequently received further instructions from my local hospital, that I am not go to A&E, but rather phone ahead and go directly to the C.M.U. I’d only have to be transferred there anyway, and the time lost going to A&E could be vital. Fortunately, I’ve not had to use this system yet though the “Oh Crap!” letters (as they are colloquially called) have been used a couple of times causing outbreaks of consternation in Doctors who were unlucky enough to be shown them!

So, having had a certain level of concern instilled, and the attacks being more frequent, surgical treatment became a priority and, after an episode resulting in good ECG data, possible.

So what is there that can be done about arrhythmia? Well it would seem there are several paths that can be taken.

The first path is what you might call immediate treatment, to stop an episode that’s in progress. There’s easy stuff I can try at home such as sitting quietly (I’m not doing a glossary entry for that one!), Eating Ice cubes or the Valsalva Manoeuvre.

Once the ‘home treatments’ are exhausted it’s off to Hospital for Cardioversion. I’ve heard one description of drug based cardioversion from a friend who told me:

“They gave me an injection of something that would – and this is a direct quote – ‘give me a feeling of impending doom’. It stopped my heart for a few seconds and then it was right as rain. Amazing stuff.”

I have to say, it’s got close, but I’m very glad I’ve never been on the receiving end.

A longer term response to the problem can be through drugs. A class of drugs called Beta-blockers in particular are used to give a more regular heartbeat. They reduce blood pressure, so I think my doctors are reluctant to increase the dose too far for me. There are other drugs too, but I’ve not experienced them and they have their own drawbacks.

The final approach (That I’m aware of) is through surgery such as a Cardiac Ablation, which destroys the malfunctioning nerves causing the arrhythmia, or the fitting of a pacemaker, which intervenes automatically to maintain the heart’s rhythm. I’ve had a Cardiac Ablation but I hope I’m some way off needing a pacemaker.

I suppose the real questions though are: “what’s it like?” and “How does it affect you and those around you?”.

I’ll start answering those by talking about the episodes themselves. I’ve fortunately avoided the fainting and dizziness, and experienced weakness from it only twice. The weakness is like an extreme exhaustion, as if you’d spent the day exercising hard, and whilst you aren’t out of breath, your muscles are incapable of any strenuous effort, to the point that when standing I’ve needed to lean against something.

The rhythm itself does not bother me – it’s disconcerting but does not impede me from doing anything. When there are palpitations it’s a little strange, as I feel every heartbeat reverberating through my body, and can actually watch my hand shake as my heart beats.

For all those things, the overriding emotion I experience is not fear – not now I know what’s happening. Rather it is Annoyance (that it’s happened); Guilt, that I may be needing other’s help or disrupting their plans; and at a certain point, Confusion over what to do.

The confusion may seem a surprise as I’ve indicated I have some pretty clear instructions, but often the arrhythmia feels like is about to self-terminate, or I’m worried that if I call an ambulance it will stop and their journey will be wasted, or perhaps worse they’ll take me in anyway and I’ll lose a day or two (and be wasting the Healthcare Professionals valuable time) as I’m observed in my perfectly normal rhythm.

For me an arrhythmia is often accompanied by some quite horrendous belching. I have no idea why, just something to do with internal pressures I guess! One time I managed to rattle next doors windows (which is across the street!) with the burping. Barney Gumble has nothing on me once that kicks off.

Nowadays even a series of innocent burps (say due to an over-fizzy drink) tend to draw questioning looks (of concern) from my wife and must be accompanied with a disclaimer regarding the cause.

Once the arrhythmia terminates I am invariably left feeling tired, and need a bit of time being relatively inactive and quiet to recover. All around me tend to be on a somewhat heightened state of alert for a day or two as well.

Outside of the immediate episodes, there is a wider affect. Though I perhaps should have carried something before, since the arrhythmias were flagged as a serious issue I now carry a little folder of medical information (made up of the “Oh Crap!” letters and discharge paperwork from my previous hospital admission) just in case I need to hitch up to A&E.

For the most part I hope those around me are unaffected, however those closest to me certainly are. For example, my wife rarely drinks alcohol in case she needs to drive me to hospital.

Though I have not, so far, experienced any of the more severe effects (fainting, weakness, etc.) we both are wary of me being left on my own for too long, due to the concern that, if something happens, I may not be able to get help before I am incapacitated.

In case that all makes it sound like I’m constantly supervised and house bound, far from it. It’s simply that one is aware of the risks and takes precautions; much as wearing a seatbelt doesn’t mean you expect to be in a car crash. Here are two examples of what I mean:

  • I frequently text my wife when I’m at home by myself to let her know I’m ok. It’s rarely so functional – fortunately there’s plenty we have to talk about and would probably be texting anyway. It’s just adds a bit of reassurance (for both of us).
  • When I go away I aim to stay with friends rather than on my own in a hotel which is, to be honest, what I’d rather do anyway!

One final thing. Recently, my arrhythmia has caused me to acquire a new toy. After speaking with the Arrhythmia Surgeon, she mentioned she had a device for her phone that takes 30 second, fairly basic ECG’s that I might find one useful (though I think it was actually phrased “Isn’t that a cool toy!? I love my toys!” – But I knew what she meant!).

In all seriousness it is likely to be useful to me. Often an arrhythmia or tachycardia self-terminates before I can get any data about it. It. Needless to say, being a bit of Nerd, and having an excellent excuse, I couldn’t resist. Here’s a few photos of the device, and the special phone case to carry it on an iPhone:

iPhone ECG device and case
The ECG pads and a special phone case to secure them to the phone.
iPhone ECG device
The ECG Pads in place on the phone using the special case

and in use:

iPhone ECG in use
The start of the recording
iPhone ECG in use, mid recording
A recording well underway

And this is the ECG it took (Actually it’s one it took earlier, in best Blue Peter tradition.)

ECG
If you fancy your own ECG machine they’re surprisingly cheap (for an ECG machine) at around £100. You can pick one up from Amazon.

Until next time,

Skwerg.

In case any of you were interested in the outcome of my trip to the Royal Brompton mentioned in my last post
It went well, and Neddy (along with a brand new Nerdy Spreadsheet) is now a permanent feature of my treatment! Though from now on I know I’ll be inhaling the real stuff.
I also ended up buying an ECG Machine! You will be able to read more about that in my next post…

Neddy Nebuliser and the Nerdy Spreadsheet

Later this week I’m off to spend a few days at the Royal Brompton as my participation in a clinical trial comes to an end. I thought for this post I’d write about the trial, Neddy Nebuliser and my particularly nerdy spreadsheet that it has prompted me to create.

Clinical trials are awesome things. They are the foundation of the incremental improvements in health that have seen the average lifespan dramatically increase in recent history. A good trial will tell you if a new pill, or treatment is better for a patient than doing nothing or giving them homeopathy or a placebo (sorry, I just repeated myself there). Crucially in these days where accountants have been set to rule over us all as the arbiters of moral propriety, a good trial can show whether it is worth opening their wallets to pay for a treatment (of course that is whole other discussion – one that I’m not going to enter into here!).

A bad trial will, at best, tell you want you want to discover not the truth. This can lead to poor treatment and spending decisions. At worst it will provide a veneer of pseudo-science with which to beguile and mislead the unwary.

After that diversion you’ll no doubt be pleased to hear I’m in a good trial! It’s a type known as a double-blind, double-dummy. For twelve weeks I took drugs from Box A. I then stopped for a week, and was given a different, but identical looking, box of drugs (Box B) which I took for another twelve weeks. One of those boxes was full of the real drug, and one was full of a placebo. (That’s the double-dummy bit). Whether Box A or Box B contained the placebo is noted somewhere, but neither I nor the clinicians administering the trial have access to it. The only way I can tell if I’m taking the real drug is by (hopefully) finding that I can walk further and get less breathless when taking one and not the other (That’s the double-blind bit).

You can read much better explanations than I can give of Clinical Trials at and their benefits, risks and abuses at Ben Goldacre’s excellent blog Bad Science.

The major benefit (for me at least) of the trial is that having started on the drug, if the drug is effective, I can’t have the treatment taken away once the trial is over if I still want it.  All being well I get to stay on the drug I’ve been using for the trial. Why is this good (aside from the medical benefit)? Well it comes back to those pesky wallets. The NHS will only pay for me to have two of the class of drugs this one fall into. I’m already taking two, so by starting it through a trial I gain a third treatment I wouldn’t routinely eligible for.

Now if that’s seeming like I’m unfairly getting more than my share of the NHS funds, well, possibly. To be honest though that ship probably sailed over 30 years ago.

Also there’s a chance it won’t be the NHS funding the drug, but rather the company supplying the drug. They’ll see it as a part of the cost of expanding their market for the drug. The pharmaceutical company pays for my treatment (Or at least a portion of it e.g. the first X years.) on the basis that they can now, thanks to the trial, sell the drug to a whole bunch of other patients (though given the parameters of the trial, it’s probably not a particularly large bunch!).  Don’t quote me on this; I don’t know if this is the case in this study, as I’m not privy to the financial ins and outs of it – I’m just a patient after all! I know it has been done on other clinical trials though.

The actual drug being studied is inhaled Ilaprost, it’s a drug that is well used for treating Pulmonary Hypertension (PHT) where the PHT is the primary condition. The study is looking at whether it will be beneficial in cases like myself where the PHT is a secondary effect of another heart condition (Which in my case is Eisenmengers Syndrome).

Inhaled Ilaprost is delivered through a natty little device called a Nebuliser. I’ve called mine Neddy (I’m not sure why its a boy. Mostly it’s name was selected for the alliteration).  Here’s a picture of him:

A picture of Neddy Nebuliser
A picture of Neddy Nebuliser

Neddy is pretty special because he’s hand held and most nebulisers aren’t. This means I can take Neddy out and about with me which is important as I have to take the Ilaprost six times a day – at 7:00am, 10:00am, 1:00pm, 4:00pm, 7:00pm & 10:00pm. I have a lot of alarms set on my phone to keep track of it all!

Everything I need to use Neddy. Clockwise from Top Left. Mouthpiece, Main body, Ampule of Drug/Placebo, Ampule snapper, pipette, Filter, funnel and Dose Well/Filter Clasp.
All the bits I use to take one dose. Clockwise from top left. Mouthpiece, main body, ampule of drug/placebo, ampule snapper, pipette, filter, funnel and dose well & filter Clasp.

To use Neddy I load the drug from a little glass ampule into a well in the top of the machine and seal it with a filter. You can see a picture of the parts involved in taking a dose below

I then put the nozzle in my mouth and breathe in and out deeply for about 20 minutes. Every time I breathe in the mechanism vibrates and turns a little bit of the drug it’s loaded with into vapour, which I then inhale. Once the correct dose has been delivered a tone sounds and the vibrating stops.

Neddy in use
Neddy in use

I think it looks like an e-cigarette, if it had been made by the soviet bloc in the 1970s. Friends have said I sound like Darth Vader when using it (though there’s less speaking and I have not yet managed to throttle anyone with the power of my mind). My wife tracks where I am in the house by the sound of it.

party blower
An addition I need to try out

She also thinks I should get a party blower (see the picture on the left…) to attach to the vent at the top of Neddy, so that when I exhale it unfurls, tooting.

I think it would be pretty cool too. Maybe I’ll do it and post a video.

Once a day I have to wash all the filters (I have 6) and the well piece I’ve used during the day. It has to be in soft or filtered water, because the filters are a microscopic mesh and the impurities in hard water can cause the mesh to clog up, which is bad. At least once a week I have to boil wash the parts. The local water is very hard, and despite always using filtered water I’ve had problems so I tend to boil wash my kit every day.

Using Neddy for the past 6 months has been interesting. The six times a day usage strangely gives a great deal of structure to the day. Though there is some leeway on the timings and it’s OK to miss the occasional dose, I’ve done my best not to. As It’s part of a clinical trial there is a compliance level, which means I have to take at least eighty percent of the doses scheduled. At the time of posting I have (by my own calculations admittedly) a 94.1% compliance. My tendency toward OCD and perhaps competitiveness means I’m up a 07:00am every day for my first puff (though I tend to use the term ‘breathing’). I organise appointments where I can around the times I have to stop and breathe. For example, I’ll arrange a haircut at 11:00am not 10:00am or GP appointment for 03:00pm not 04:00pm. When I’m really organised, I’ll get my diary out whilst breathing at 7am and work out my days’ schedule around the doses.

Neddy has proved relatively unobtrusive. My friends have been good enough to sit through my ‘breathing’ and chat among themselves – something that’s not a problem for twenty minutes. It’s the odd occasion where it has taken much longer that one starts to feel self-conscious.

I was very nervous of using Neddy in public initially, fearing censure from other people, who (in my mind) would inevitably think I was taking some heinous illegal drugs or using an e-cigarette in a no smoking area and take me to task for it. I must have had a guilty conscience or something. Now, I have no Idea why I though that – I’ll pretty much whip Neddy out anywhere, even travelling. Needless to say I can’t actually drive whilst using Neddy, but if I’m a passenger and there aren’t too many pot holes or hairpin bends I can set things up whilst we’re moving and the dose delivery itself is no problem.

Neddy in his travelling box
Neddy in his travelling box

I think I get the odd small child looking at me curiously, and everyone else is pretty much oblivious to it. In fact, I’m almost disappointed. I was looking forward to self-righteously remonstrating with a would be busy body about it. I was so nervous about it that the first time I did use the nebuliser when I was out I was actually shedding tears of gratitude whilst thanking the staff f the coffee shop I was in for allowing me to use it in their premises.

Having read the title, you may be wondering about the Nerdy spreadsheet by now. Well it’s like this. As a trial, I have to record the doses I use on a sheet, ticking off that I’ve taken them and noting any doses I’ve missed and why. I’d been doing a few weeks  when I began to notice that the time it took to complete a dose seemed to be about 10 minutes longer than it had been.

Being of a slightly scientific mind-set, I decided to start tracking the phenomenon. Initially I just wrote the times down on the form instead of putting a tick. It was quite interesting, and strangely motivating.

I would occasionally get really poor time and my data analysing mind then thought “I wonder if these times are caused by a particular filter?”. So I started noting the time and which filter I’d used.

The final step to the Dark Side came when I realised that what I really needed was to track my times on a spreadsheet. So was born My Nerdy Spreadsheet – so called because one of the Health Care Professionals on the trial team told me it was the sort of thing a nerd like me would do. I’m not sure I really qualify as a nerd, but I’ll take the compliment.

The problem with Nerdy spreadsheets is, they grow. So I quickly saw that not only could I track average times and average time for each filter, but I could add graphs of the times across each week, calculate my compliance and many other things that I finally realised weren’t really necessary at all.

All the data did have a use though. When I had problems with the timings again, I was able to send the spreadsheet to the relevant people and it was clear what was happening (if not why!).

And now I can’t stop myself. The trial is coming to an end, and hopefully I will have been effective and I’ll be allowed go onto the real drug (called open label, as the vials will have the drug name on so I‘ll know that I’m taking it). And I’ll still maintain my spreadsheet. I’m not sure why, it just seems wrong not to. And you know, maybe that data will still be useful…

Until next time,

Skwerg