I wasn’t going to bother posting about these but they’re dragging on for so long that it’s … well it’s just time like I feel I need to talk about them I guess.
The minor health issue is that I had a lump on my head, for a year now. It’s nothing serious just a cyst, lots of people get them, sometimes they go away but at other times they need removing or become infected.
I went to the doctors after putting up with it for about 3 months and he said to come back in 3 more months. That was October last year so when I got it removed on Friday (7/10/2016) it has been there for almost 15 months. It has annoyed me every single fucking day of that time, and night. It’d probably still be there right now but thankfully I started seeing another Doctor (about health issue number 2 below) and she actually did something about it, including the minor surgery to remove it. In the end it’s made a mess because it had not only burst and gotten infected but had done so repeatedly over those 15 months and thus had made a mess of the area.
The second issue is a little more serious but we’re hoping that it proves to be relatively minor and easy to treat, maybe even temporary! (optimism!).
I started feeling faint and having to stop some of my exercise / training sessions back in June (yes this is ongoing, yay for the NHS) so after doing the obvious stuff like taking a break and making sure I was getting enough vitamins etc I went back to exercising and … had exactly the same problem. Since then I’ve only had a few things done: Blood tests, ECG, worn a heart monitor for 7 days, but this has taken absolutely fucking forever.
- General health check, drink, diet, glands etc health interview 10 minutes – 1 week wait for appointment.
- Blood tests – 10 minutes – 2 week wait for appointment then 2 weeks for results (the results showed nothing amiss so they didn’t bother to phone me, idiots).
- ECG – 10 minutes – done same day, instant results! (done at the Doctors surgery).
- Heart Monitor – 6 weeks waiting list, 10 minute appointment (2 hours waiting), 7 days monitoring, up to 4 weeks for results.
I’m still waiting for the results of the heart monitor and probably will be until NOVEMBER! No rush anyone it’s only my HEART. There’s not even any guarantee that the heart monitor will show anything and that’s beacuse it wasn’t really “monitoring” anything.
You see the device you wear has a two sticky tabs that connect the wires to you, you must apply them correctly yourself twice a day which is pretty easy but also stupidly simple to get wrong. These sticky pads come in two forms, really itchy and “AARRRGH GET IT OFF ME!!!“, they don’t give you many of the “really itchy” kind because they cost more…
Next up is the issue that it only actually records something when you press a button it, and you only have 10 slots in the devices memory to record things, the button is very badly placed making it easy to press it by accident when for example:
- You need to move it because it’s clipped to your belt stupidly and you can’t sit down wearing it
- You need to move it back onto your belt because the wires are short and you can’t stand up when it’s clipped too a pocket
- It’s fallen off your belt because the clamp is weak
- You’ve gone to the loo and need to drop your trousers so have to either unplug it or hold somehow whilst you “go”
- You roll over on it in your sleep and try to move it
- a thousand and other situations that make you despair of actually having any slots left to record anything
Also this requires you to realise that you should be recording something, the device does no recording or monitoring of it’s own, just a 30 second long window of memory so that when you do press the button it *might* have caught the thing that just passed by that you wanted it to record. In total it records 1 minutes worth of data in each slot because after pressing it records that previous 30 seconds + the next 30 seconds.
Of course if you’re me you only get these problems when doing things like exercising, which I’ve been told not to do… so guess what I did?
- The day after I got it I deliberately ran up and down the 6 flights of stairs in our building until I nearly collapsed: and pressed the button.
- The next day we went for a long tiring walk around the nature reserve: another press although not sure that was worth it.
- Then the first accidental press round at a friends… great.
- Finally on the Monday I went to see my personal trainer where I used to do group sessions and exercise and we did an hour of very tough training with the result: I had to press that button 3 damned times! I count that as a positive though since that was the point.
There might have been other times that I should have pressed the button, but I’m the patient, I don’t know what my heart *should* be doing, it’s always been in here thumping away and apparently that’s not always been right so how do we know that I’m getting the correct data?
Hopefully by November (NOVEMBER FFS!) we should have an answer to whats wrong and then maybe I can get treatment and start to be more active again, I can stop feeling so tired and worn out as often.
I don’t want anyone to worry, we’re pretty sure that it’ll be some minor form of Tachycardia which will be treatable either with a short course of something, or pills forever.
Here finally is that point of this post though, this whole process has been a fucking joke to go through and I know for a fact that it costs peoples lives. I’ve never been worried that it would claim mine but it HAS weighed in mind just because it’s taken so long.
We’ve all seen videos / images of people wired up to ECG machines, with a mask on, running on a treadmill whilst a Doctor makes notes, yes? Well that would have been more effective than the little device I wore to monitor my heart, I know because I sat next to one such setup whilst getting that fucking device and chatting to the nurse. Apparently they don’t use those much anymore because it requires a doctor to be present.
Let me rewind briefly, to June when this started. Thankfully I started by seeing a different Doctor than usual, my usual Doctor (who I will never see again) would just have sent me away with a “come back in 3 months” which he has done for everything I have ever seen him for.
Anyway I’d been having these issues for several weeks by that appointment and it started with the health checkup/interview, then bloodtests and the resting ECG. Since then progress has been pretty glacial and in nearly 2 months I’ve only submitted the heart monitor device for analysis, by the time I get results it will be 3 months and then? Well then lets assume it shows nothing amiss … so I’ll need the next set of tests like a cardio echogram which i dread to imagine what the waiting list is like for that, after that it might be ..? I dunno an X-ray or CT scan or something?
The point is that each of these will have another waiting list, with another appointment with another wait for the results. So how many people die between “Ow my chest, I feel faint” and the diagnosis? Nevermind treatment just diagnosis.
I know someone who died on the waiting list for the very heart monitoring device that I’ve just given back and it freaks me out because I am the same age now as he was then. For what has actually been just 7 days and 30 minutes of tests I’ve had to wait 5 months and will still be waiting for another for the results meaning 6 months from that first doctors visit which was already a couple of weeks after the first problems.
Lets say that instead of the heart monitor I’d had the exercise ECG which takes about 15 minutes. The total time would be 45 minutes of tests, throw in the cardio echogram and call it 1 hour 45 minutes… why isn’t this a single appointment? You’d still have to wait 6 weeks for it but that’d be the whole thing done and dusted. Lets say instead that you need to narrow it down rather than throwing all the possible tests at people, because I’ve been simplifying and there’s a few of them. Split this into two and do the easy stuff first like blood test & resting ECG at the doctors surgery. If that shows the problem then great you’ve got out of the testing loop early, simple optimisation isn’t it :)
If you haven’t gotten a diagnosis though then you’d move onto stage 2, and a battery of non-invasive/non-surgical tests at the hospital done in a single appointment. Spend 6 weeks waiting and 2 hours being prodded and poked. That’d probably deal with 90% of patient straight away, many filtered out at stage 1 with the simple stuff like viral infections, stress, hormone issues etc. Stage 2 would get most everyone else. The remaining few though could be sent onto the specific test(s) that would help them guided by the data they just got.
Then there’s the piece of shite heart monitor that I just had.
I’m fucking appalled by it’s existence, there are devices which actively monitor your heart, and remember it’s just a waveform so you can analyse it easily probably in realtime to detect any issues that might be occuring.
It stores so little data, it costs so much for what is some sram, a tiny cpu, ADC and a op-amp to boost the signal totaling perhaps £10 in parts, it’s usability is somewhere between insulting and a joke, the software that they use is archaic and does absolutely no analysis of it’s own, NONE. At work we were discussing more advanced beat detection in open source audio programs! It’s shocking, even the disposable pads for the electrodes cost £30 to £50 per pack! The result is a costly piece of shit device which probably won’t capture the data needed and has resulted in them no longer using the Exercise ECG machines very much.
So I’m ranting because I’m pissed off by the lethargic, half-arsed process of it all. The waste, the stupidity, the time it’s taken, the rip-off costs for the piece-of-shit equipment that the NHS is using and nowhere that I look can I find an answer to the question: How many people die whilst waiting for a heart condition diagnosis?
We know that it’s non-zero, it’s at least one.
I’ll be fine, this will get diagnosed and it’ll be something simple that can be treated or it’ll be complex… but can be treated. The process to get that far though, is shite, and I bet there’s plenty in the NHS who know that but are powerless to change it.