Could it be angina? Or endocarditis? ... - British Heart Fou...

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Could it be angina? Or endocarditis? Or in my head? This is a long post sorry!

woodlandwonders profile image
23 Replies

I answerd someone's post on endocarditis last week and while looking at the symptptoms realised that they were what had been going on with me for several weeks, after months of slowly going downhill. My friend dragged me to the GP on Tuesday who sent me straight to amblutory care, because I'm high risk, for several reasons, and they admitted me.

I have chills during the day, nightsweats, constant breathlessness, extremely fatigued, constant headache but no feaver. I've lost nearly a stone

They have run tests, normal bloods and infection markers are normal and we are waiting for the 3 endocarditis cultures to come back. They sent me home on Thursday as my sats are good, though blood pressure up and down, which is unusal, and they really need the beds. The Doctor phoned first thing yesterday to tell me to come back 8am monday.

I have also been getting a really tight chest and pain in my shoulder blade that radiates around the front of my ribs. When I really exert myself, like changing a duvet, its an awful pain almost like an "electric" stabbing across the front of my chest" that take several minutes to alleviate, bent double. I also get very hot and clammy. These have been going on since last year. The doctors just say it can't be a heart attack........

Yesterday I totally over did it and then got very confused. My friend came and I knew it was him, because I was told but I Just couldn't recognise him, understand anything he was saying and it felt wrong to call him by his name because I didn't think it was him. This went on for several hours with the confession slowly lifting.

I just really needed to get this out as I'm feeling quite scared, thanks for taking the time to read x

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woodlandwonders profile image
woodlandwonders
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23 Replies
kefalonia1 profile image
kefalonia1

Please ask to be checked for Sepsis, l had most of your symptoms especially the confusion, next to come was the slurred speech and lack of urine. Ring for an Ambulance straight away if that happens!!! because my Sepsis was only diagnosed when l was very close to death on life support, it lead to Complex lnfective Endocarditis and two open heart surgeries and 3 months in hospital. l was convinced it was just a tummy bug, if l had got help earlier my very healthy heart would not have been in the state it is now. On a brighter note l am mended now and once more enjoying life. Please let us know how you got on, Take care, Sue.

woodlandwonders profile image
woodlandwonders in reply to kefalonia1

Thank you xx

Milkfairy profile image
MilkfairyHeart Star

Hi agree with the others you need to be assessed by a healthcare professional promptly.

Please ring 111 or an ambulance if necessary.

woodlandwonders profile image
woodlandwonders in reply to Milkfairy

Thank you xx

woodlandwonders profile image
woodlandwonders

Hello Sue , Jo and Milkfairy

Thank you for taking the time to reply early. That post took me hours to write so please don't think me rude by not replying to you individually. I'm just exhausted.

After you all reached out I decided to call ambulatory care and spoke to the Secretary there ( the doctor had called on Friday so I had a direct number he'd left for me to return the call). Cheeky, I know, but I knew 111 would want to call an ambulance so saved him time in the end 😆

Swindon A&E will be a nightmare after the first reported case of corona virus there. Everyone wil now think they have it!!

Anyway I got an email address (easier than talking for me right now and can go slow) Explained everything that had happened since I left the ward and he called back. He agreed that what happend yesterday is of concern and they will need investigate further on monday. But as the episode has passed ,I'm not FACE and doing nothing seems to be working to prevent another one. The best place for me this weekend, unless it happens again, or i get worse in any other way, is not on a trolley in A&E. He had cheacked to see if my cultures are back, they are not.

Im in first thing Monday, he's already written up the tests and put in a request to cardiology (not my usual hospital for heart) to come down to review everything and pay more attention to the chest pains, tutted something about women being ignored, you'll be pleased to know Milkfairy.

I can't thank you enough for giving me the confidence to do that xx

J x

Milkfairy profile image
MilkfairyHeart Star in reply to woodlandwonders

I am so pleased to hear you able to access ths care you need.

I hope your appointment goes well on Monday and do say how you get on.

Good to see the sisterhood in action 😉

woodlandwonders profile image
woodlandwonders

Thank you xx

kefalonia1 profile image
kefalonia1

Hi, that's great you have acted and made yourself high up in the NHS system. l don't know you but l have been worried about you this weekend, please get back to us when you know results. ln the meantime relax, have a glass of wine or six, and eat chocolate, (so good for the soul) Sue x

woodlandwonders profile image
woodlandwonders in reply to kefalonia1

Thank you xx

When I feel better thats exactly where i will be! But at the moment its water and a little soup. That's how I know I'm poorly. There could be a slab of my fave chocolate one side and a glass on the other (forget the £50 note test) and I would leave it. Not me at all 😉 jx

Sunnie2day profile image
Sunnie2day

Are you alone or is there someone there with you to monitor your temperature and blood pressure? Those numbers should be read every two-three hours today and logged on a sheet of paper to take to the doctor tomorrow. It will be an enormously helpful quick read for the doctor of how you did today and might make a very real difference in how you're assessed and a treatment/care plan put in place.

I agree with the others, Woodland, you do not sound well at all. (((HUGS))) and all the very best wishes for you!

woodlandwonders profile image
woodlandwonders in reply to Sunnie2day

Thanks for replying Sunny x

I live in a caravan in my Parents garden.

BigBang health event at 30 = long term Ill health = career loss = mortgage loss = parents at 42.

Whoever i talk to i tell them to grab it. Dont ever wait! But everyone on here already knows that x

So, its not by choice really. And I'm the ONlY carer in the family, so this has been hard. But i think my friends have a Rota going because they are "just passing " The closest lives 35 mins away. I feel blessed.

I've never had a problem with my blood pressure till now, even white coats don't effect me. But I will take your advice and when this is over get a monitor for the future.

I'm just hanging on till tomorrow when I hope they will know what's going on and can help me.

You four ladies have helped me to get through these four day as as much as my friends, thank you more than you could know xxx

Sunnie2day profile image
Sunnie2day in reply to woodlandwonders

Please keep us updated. We're not able to be boots on the ground but we would be if we could:)

Milkfairy profile image
MilkfairyHeart Star in reply to woodlandwonders

One more sleep until tomorrow and hopefully some answers for you.

Sunnie2day says it so well we can always be here for you the best we can even if we can't be actually with you in person

kefalonia1 profile image
kefalonia1

Good luck for today, its 04.23 and l am awake because my Husband is a trucker so l wake when he leaves. Keep in touch honey. Sue x

woodlandwonders profile image
woodlandwonders in reply to kefalonia1

Hey Sue, Long days for you then? Thank you for thinking about me, means a lot x

woodlandwonders profile image
woodlandwonders

Hello Ladies,

So the good news is the cultures were clear which is great. They want to do a TOE to be 100% certain and look properly at my valves. Aggghhh!

They have done an urgent referral to cardiology at this hospital , not where i am currently seen. I should see them in two weeks. They think my valves have become worse, worse..... they also think my current cardiologist has not been applying the best care - my friend has bat ears !

Im happy with that because he is quite smarmy 😂

The other thing they were concerned about is COPD. Bit of a shock, I'm not gonna lie! So urgent referral to the wierd alien breathing machine too.

The confusion? Well thats oxygen deprevation! They are so to the point! I'm not to do anything till I've been back to cardiology other that put some weight on! But not chocolates or wine. I asked😆

THANK YOU, THANK YOU, THANK YOU XX

Milkfairy profile image
MilkfairyHeart Star in reply to woodlandwonders

It must be a relief to get some of the answers you needed to explain your symptoms.

I am glad you were able to access the care you needed without having to wait too long.

Do tell us all how you get on.

woodlandwonders profile image
woodlandwonders in reply to Milkfairy

Ive been blessed this time for sure Milkfairy. But this is has been a long journey of 12 years for me. of being laughed at, riddiculed, fobbed off and being made to feel like I'm mad. Seriously mad. They all know that what is happening to me now could have been prevented if someone had listend. They know because I tell them so maybe they won't do it to someone else.

The emergancy staff have been amazing considering how streatched they are, it truly is a war zone in there at the moment. But in all honesty, they can't really ignore me the way I am at the moment. They have to do something, a 90yr old on a Zimmer would beat me in a race!

I think I'm like you in that way. They can see what I've ploughed against to get the diagnosis, treatment and just some simple respect that everyone deserves. And I know more about it than they do. Not so crazy 😨

Milkfairy profile image
MilkfairyHeart Star in reply to woodlandwonders

The validation of being listened to as a patient is very powerful.

I share your thought of

'could have been prevented if someone had listened. '

You know your body best and I hope you now can work with your Cardiology team to get the treatment you need

kefalonia1 profile image
kefalonia1 in reply to woodlandwonders

Great news mate, just chill, keep warm and eat good food. Sounds like you are in the right hands at last. Try and keep positive, watch funny rubbish on the tv it might help. Take care, Sue x

woodlandwonders profile image
woodlandwonders in reply to kefalonia1

Thank you xx I got rid of the tv Ariel about a year ago so i could only watch stuff that made me laugh me 😊

woodlandwonders profile image
woodlandwonders

It's great Jo, but you are right, I am pretty scared about what's going on. Felt a bit "yeah whatever" about it yesterday but my brain is now catching up with what this could mean.

Least the finding out bits will all be done quickly. That's definitely the worst bit. And there is comfort in having a plan. Any kinda plan 😊

woodlandwonders profile image
woodlandwonders

Not had that before so this will be new to me 😊.

The first thing my cardiologist ever said to me was "I should have retired last year" Um, yeah. Seems that he should!

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