Seriously unwell with heart inflammation

[Kg180]

In serious trouble with my.heart is not beating properly very inflammed tried 111 a and e and gp because troponin isn't up they won't believe me I missed my echo due to illness have had back to back colds and infections fighting for my life at home because nobody will help me I don't know how to get inflammation down at home I feel very scared I know I could die anytime I also have mitochondrial disease

[Hidden]

Have you checked for covid? As far as i know a virus can cause heart inflammation...

[Hidden]

Hello

It is very sad to hear that no one is helping you and you feel unwell as you do

If you are feeling so ill call an ambulance out they can not ignore you

Or take yourself back to A&E and just because there are no signs with your blood levels been high tell them you feel unwell and you want them to do further tests because you know everything is not ok

Sometimes and it should not happen but we can be dismissed but we know our own bodies better than anyone and so if we get that feeling something is wrong we have to fight and make sure we get the help we need

I hope you will do this and don't care what they think as long as you get the medical attention you need that is all that matters

Good Luck and keep us updated x

[Kg180 in reply to Hidden]

I tried to call ambulance but they won't take me im bedbound very ill have been bedbound for 2 years

[Hidden in reply to Kg180]

Hello

Even if someone is bed bound they cannot refuse to give you medical attention or come out to you

If you are bed bound you must have someone caring for you ?

Get them to speak on your behalf and ask them to help you

No Medical service should or can refuse to help someone in need x

[Heather1957 in reply to Hidden]

I am not 100% sure but some people are tagged for making frequent calls to the emergency services. They probably come out but if they can't find anything obviously wrong they won't take the person to hospital.There are people who have some MH issues (I am not saying the op is one of them) but do make constant calls to the emergency services because they genuinely believe they are ill.

I am not sure where the op goes now as it seems they have exhausted the calls to the ambulance service.

I just hope the op is overly worried about their health rather than it being an actual problem.

[Hidden in reply to Heather1957]

Yes I know this can happen sometimes

You would hope if that was the case they would make sure they are getting the correct help they need if it is Mental Health or something else they need x

[Heather1957 in reply to Hidden]

I hope so as whether the op is actually ill or not they believe that is the case and it is causing them a lot of anxiety!

[Hidden in reply to Heather1957]

I agree x

[Kg180 in reply to Heather1957]

I am very very ill and I have no where to turn to horrible to be fighting for my life and yet I can't get thr right help

[Heather1957 in reply to Kg180]

I am really sorry you feel this, my brain just doesn't want to accept that everyone in the medical profession has turned their back on you. Do you have contact with your local Samaritans?

[Kg180 in reply to Heather1957]

What use would they be for my heart

[Heather1957 in reply to Kg180]

They would certainly support you emotionally! I don't know anyone here who can MAKE the medical people do anything for you but it sounds like you need some kind of support.

[Kg180]

I'm not the only one with normal ecg I have spoken to others I can't get to hospital I have mitochondrial disease and have been bedbound 2 years now and can't sit up I have no family to help me so calling for help is all I csn do but got me nowhere

[Hidden]

Good to hear the the voice of reason

[Ascb]

Hi and I'm sorry that you're suffering. I noticed that you'd posted something similar 3 months ago - I'm not sure if you have flare ups of these kinds of symptoms or if you've been in bed since 3 months ago feeling that you will die. I don't doubt you have some physical issues, but I also gently suggest that you ask your GP to refer you to your local mental health services to help you manage your thoughts and emotions around your illness and symptoms. No one should have to feel the way you do at the moment and there is help out there for you. I send you all good wishes for some relief.

[Hidden]

Dear kg180

What a heart breaking post that you have sent this forum.

Judging by the answers you have given to the folks on here, that have replied to your post, your not happy with the answers presented to you.

Now I can fully understand why , no one here can address your issues, as most of your answers need to be medically based.

You state that you are bed bound { which I do not doubt } then you have a team around you that you need for your day to day care.

If that team is not medically trained to help you through your worries, both medical and mental, then they should be able to pass on your concerns to someone that can.

I hope since you have posted that maybe things have calmed down, if not then you must seek the help you need.

I fear that this forum is not the place for that and it can only offer support, which I am offering along with many others on here, now

Take care you are in my thoughts.

[WeaverShaz]

I am so sorry you feel so abandoned and alone. I have no medical training, but, as you are bedbound and alone much of the time, could it be possible you are suffering panic attacks caused by anxiety? My mother used to suffer similarly and felt she was going to die any minute. If you are bedbound, you must have carers coming in to help you. Could they not push for a GP to visit you and maybe try some appropriate medications? I hope you get some relief soon.

[Prada47]

Hello Kg 180

Sorry to hear of your troubles, I do hope you can get treatment soon to relieve the stress over your Heart Concerns. You don't say if you are taking meds for a Heart Condition but are you ??

Meds are the first choice of Treatment for a lot of Heart Conditions long before intervention occur.

I am sure A & E would refer you to a Cardiologist should they have any concern at all with your Heart function.

Try to rationalise you condition worrying would not help a heart condition I know easier said than done but please try.

Regards

[Kg180 in reply to Prada47]

A and e have been useless because my bloods don't raise im on ivabradine

[Seaguller]

Please call 999

[Kg180 in reply to Seaguller]

Tried that a week ago they won't take me in because my temp and blood pressure weren't too bad they wouldn't listen its not uncommon in mitochondrial disease for things to be missed we don't present like everyone else

[Heather1957 in reply to Kg180]

What do YOU want them to do?

[mathematics]

Have you been in touch with the Lily Foundation in the UK their number is 0300 400 1234 or 07947 257247 they have a website and an email address they might be able to provide you with the specialist help that you obviously need as you have such a rare condition Mitochondrial disease.

[Milkfairy Heart Star]

Hello Kd180,

I really sorry that you are feeling the way you do at the moment.

Have you been referred to the specialist services for patients living with Mitochondrial disease?

mitochondrialdisease.nhs.uk...

Maybe get in contact with your GP and ask for a coordinate my care plan to be put in place?

Once agreed a Coordinate my care plan can be uploaded on your GP's, the ambulance service, carers, local council and local hospital's electronic records system.

I also suggest you get in contact with the provider of your care services to discuss your care needs and the further support you need.

coordinatemycare.co.uk/