My angina diary gave me a shock

[bee_bear]

A couple of months ago I was advised to keep a diary of my angina symptoms - left hand side chest/neck/collarbone/arm pain, fatigue, lightheadedness, heavy legs..

I was asked to send it in to the cardiac nurse yesterday and so I transferred all my notes from my phone calendar into a spreadsheet. What a shock it was to see it all listed!

It's insane what you can normalise. I knew it wasn't good but hadn't taken in how often & how severely I was getting symptoms, I think because I've just been focused on dealing with the symptoms & trying to get through each week.

One thing I noticed was that there have been a few times that I should have gone to A&E and I didn't. I now see how stupid that is but I can also see why I did it. It stresses out my family and puts pressure on a heaving NHS and the few times I've been to A&E since my heart attack with angina, they haven't been able to do anything and I've taken up a bed in the ward for a night or two.

Anyway, I've had my eyes opened, will go to A&E when needed and can definitely say that keeping a diary is a very good idea!

[BeKind28-]

Hello

Seeing things written down can be a surprise as you have found but it is good that it has made you realise how things are and that now if you need to you will go to A&E even though I hope you don't have to x

[bee_bear in reply to BeKind28-]

Thanks. It's certainly made me feel more confident about pushing for tests and treatment!

[BeKind28- in reply to bee_bear]

Hello

Well that is good that you were asked to do this as it has now made you feel you can push more for tests and treatment so in a way it has ended up been a positive x

[Fanfab1]

hello

Could you please share what happened in those instances where you should have gone to A&E? What was different about those episodes.

hoping to learn from it. Others might too.

Thanks

[bee_bear in reply to Fanfab1]

They involved my usual feeling of pressure in the left hand side of my chest, lightheadedness, shortness of breath and a strong pain like 3 big squeezes of my heart.

I had that on exertion once but a couple of times I was also woken up at 4:30am by the same squeezing pain too.

Each time I was left with a bruised feeling in my heart, exhaustion, light headedness and heavy legs. Taking days, over a week to feel better.

Reading that back it just seems crazy that I didn't go

[Milkfairy Heart Star in reply to bee_bear]

I don't go into hospital as often as I should either, even though I have a careplan.I have in over 11 years of living with vasospastic angina, have been admitted about 18 times. From 6 to 18 days in hospital on IV GTN.

Have you been offered any further testing to determine the cause of your angina?

[bee_bear in reply to Milkfairy]

I'm so sorry you have to go through that. I've never had the chest pain last longer than a day and even then it's on and off. I've never had to have morphine or IV GTN and can't imagine what it must feel like to need that.

I'm in the middle of being tested. Going through the tick boxes, just had a cardiac CT, waiting for my stress MRI and then, if need be, I'm hoping to be referred to a MVA/CAS specialist for a provocative angio. I'm getting my ducks in a row at the moment to make that happen. I'm desperate for a medical diagnosis and to make sure my meds are right.

[Milkfairy Heart Star in reply to bee_bear]

Thank you for your kind words.

There are more and more centres interested in performing functional angiograms.

The problem is to do with the use of acetylcholine which isn't licensed to be used in this way, along with Cardiologists learning how to do the testing.

I totally understand your wish to want to know why you are having your chest pain.

It's a shame that it is still so challenging to access the care we need.

[Fanfab1 in reply to bee_bear]

Thanks for explaining, I think your family would prefer you go to A&E than try to save them from the stress albeit it is difficult. And the NHS - that’s what they are there for. 👍

[Milkfairy Heart Star in reply to Fanfab1]

The problem is that the NHS is under so much pressure today.

Some aspects of my care have deteriorated over the last 10 years.

Last February I had to wait 48 hours for my bed on the Cardiology ward.

In November I waited 16 hours in A&E for my bed.

[bee_bear in reply to Fanfab1]

I'm sure you're right about that. 💚

[roughquest]

A senior doctor told me “there is so much wastage, management and general squandering in the NHS please don’t ever be worried about wasting our time or occupying our beds. Just get yourself fixed”.

So now I don’t worry and if things aren’t right I go to A&E.

[bee_bear in reply to roughquest]

That's one to remember for sure! I've had the docs at A&E say that it's 'people like you' that we want to use A&E. I knew what they meant, it's still hard though!

[Collectone]

You're right about normalising how we feel .I often think about how I felt before my heart condition and I actually can't get any feeling of how good health actually feels anymore because our not normal is our normal now !

[bee_bear in reply to Collectone]

Oh I hear you. Every now and then I try and do something that I love, like walking up a hill, and within half an hour I'm reminded that I'm not who I was before the HA! I'm still working on it though. Even if I have to take a year to build up to it!

[MWIC]

Adaptability - it’s a great thing but some of us are a bit too good at it and sometimes fail to fully realise how health has actually deteriorated over a period of time

[bee_bear in reply to MWIC]

Absolutely this! About half way through populating my diary spreadsheet it hit me like a ton of bricks. It made me feel sad too but now I just feel annoyed and determined not to mess up my rehab or give up trying to get proper diagnosis and treatment.

I never expected a symptom diary to be so important, it is, on so many levels!

[bludnut]

Hi bee_bear, I like the idea of keeping notes about your issues, maybe I will do something similar myselfe. I do mark my diary about something that I am suffering from (constipation) due to my medication, so maybe I will now mark it when in pain.

bludnut

[bee_bear in reply to bludnut]

I pop in a quick note about type of pain, what I'm doing or have just done, anything else that stands out. Fascinating to see the ebb and flow of symptoms & triggers.

Hope it helps you

[WeeHoolet]

Hello,

I'll take your lead, bee_bear, and keep a diary. Thank you 🦉