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I'm new and I need help

Sleepybear987 profile image
29 Replies

I'm new and I would be grateful if someone could help.

I haven't got an official diagnosis but I have been having heart issues for the past year. I'm 23 years old and last year I had really bad chest pains. I went to the walk-in and they were like "you're feeling anxious".

Anyway, a couple of ECGs (privately) later and an MRI, my GP came back and said that I had all the symptoms of having a stroke. I currently have fluid on my heart and I suffer from chest pains. I'm currently at home shielding and I find it hard to complete normal tasks. I'm on bisoprolol currently, upped to 2.5mmg as of recently. I work in a year 6 SEN class so it's made working really difficult - I'm currently looking for a job that isn't as intense - which is looking to be impossible because of the pandemic.

Earlier last month, I got a letter from my consultant saying that he's not worried about me at all and has delayed any investigation until May. I partly understand because of COVID, however my whole life has been affected because of this. Just this week I felt like I should have called the ambulance because I was struggling to breathe. I don't know why I didn't but I've been having these flare ups more regularly whenever I try to exercise or do something that mildly intense (e.g. doing the laundry or cooking a big meal).

My question is; what would YOUR next steps be? If you felt dismissed by a consultant and are unsure on what your future looks like, then what would you do? Would you change hospitals? Would you ask for a higher dose of medication? I mean obviously I'm looking for new work but I'm a teaching assistant, I'm not qualified for much else.

Any ideas would be helpful! Thanks in advance.

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29 Replies
vinixxx profile image
vinixxx

Of course you should try to find more details about your condition.

Sleepybear987 profile image
Sleepybear987 in reply to vinixxx

You're right! I just don't know where to start, I'm gonna call my GP and ask what they think but I have a funny feeling that I need to go privately.

Montmax1 profile image
Montmax1

Next time this happens ring 999 do not wait I lost my son in December due to him not being seen by specialist. Told by ambulance to ring 999 don't ring 111. Hope you get sorted soon.

Sleepybear987 profile image
Sleepybear987 in reply to Montmax1

Oh my goodness, I'm so sorry! You're right, I think my fear of the hospitals was also a factor but I need to put my foot down. Thinking of you

EmmyLaury12 profile image
EmmyLaury12

Hello Sleepybear

You definitely need some reassurance from health professionals .

I would ring yourGp ASAP and discuss what you have told us .

Don’t delay they have to help when they listen to how poorly you are .

As far as your job is concerned . I’d get your health fixed first then when you feel stronger look for a more suitable position.

Wishing you well,

Takecare x

Bassman65 profile image
Bassman65

First step, make an appointment with your gp even if it is a telephone call from them. Whilst you are waiting for that appointment give the bhf nurse helpline a call they are super knowledgeable and they may have some advice for you

Page12 profile image
Page12

Hi sleepybear, I'm sorry about your situation and my heart goes out to you as. Your so young. When ever you feeling bad just ring 999 and get in to hospital and make sure you looked in to it. As for having breathing episodes often I personally feel stress and your fear n Anxiety brings that on. Best to speak to your GP and tell him/her about how you feel.

Sleepybear987 profile image
Sleepybear987 in reply to Page12

Even if it was anxiety, you're right it's still worth me flagging it up I guess because anxiety can lead to strokes.

Hi Sleepyhead 897 - I think I would call 111 - they are very good at picking up who needs help and tell them how bad you are feeling - do not minimise your symptoms.

Hi this is similar to myself fluid on the heart I assume you mean pericarditus I had this last march due to covid and i still have chest pain now but it is fading so give it time and rest If you can but if pain gets worse go to a and e to get checked out again as no chest pain should go unchecked

Sleepybear987 profile image
Sleepybear987 in reply to

You're totally right (and I don't know if it's what you have or not as I haven't had a "formal diagnosis". The only thing I've been told is that I have pericardial effusion and I haven't had anymore information since). I definitely think that I've been on auto-pilot and now that I've had time to think about it, I've realised how bad my symptoms are.

Sleepybear987 profile image
Sleepybear987 in reply to Sleepybear987

Thank you btw!!!

Sunnie2day profile image
Sunnie2day in reply to Sleepybear987

If you have been told you have pericardial effusion, you have pericarditis. The following link is to the BHF page on the condition:

bhf.org.uk/informationsuppo...

It is very important to advise your GP and/or consultant about the continued breathlessness as it can be a signal of developing cardiac tamponade - a life threatening increase in the amount of pericardial effusion.

When they discovered the pericardial effusion did anyone suggest a course of Colchicine? It is a gout medication that is exceptionally effective in pericarditis and is now the standard medication for the condition; for a 'mild case they usually prescribe a 14 day course, for more severe cases it can be as long as a 90 day course - and be advised not everyone can tolerate it.

I have recurrent pericarditis (since the late 1990s-early 2000s), can't tolerate Colchicine but a course of a diuretic (usually furosemide) works nicely to 'drain' off the effusion when it increases to where I'm breathless.

Also, if you find you're waking in the middle of the night coughing, it is a sign the effusion is dangerously increased - ring 999, tell them you have been diagnosed with pericardial effusion and now you're coughing when lying down.

Once you've advised your consultant you're having breathlessness and chest pain, if he/she still seems casual about moving your investigations along with urgency, do go private. I did and have never regretted doing so - it saved my life (I was on the verge of cardiac tamponade and the private cardiologist caught it in time, if I'd waited for the NHS appointments I likely wouldn't be here now). All in it cost me just under £1000, well worth the bite out of my savings.

And once the private consultant got a look at my echo, he put me on his NHS list marked 'urgent'. The longest I've had to wait, even during the pandemic, has been no more than 3 weeks and in emergencies, much less. I recently (just before Christmas 2020) I telephoned his secretary about increased symptoms and within 24 hours was in the lab for an echo to see if I was correct about increasing effusion (I was, went on furosemide and began recovering almost immediately).

Sleepybear987 profile image
Sleepybear987 in reply to Sunnie2day

Okay so you've confirmed something that I was researching. The bisprolol has been alright at muting the problem but the medicine you mentioned I read is really helpful. I'm gonna add that to my already mounting pile of notes!

And I don't know if you saw my last comment but yeah, the doctors were really lax so I think going private is going to be an option because even if it's an "easy fix" so to speak, at least I can know what I'm dealing with if that makes sense.

Thank you so much, you've confirmed what I was already thinking.

Sunnie2day profile image
Sunnie2day in reply to Sleepybear987

I did see your last comment and was dismayed on your behalf - telling them the pain is still there and you're having periods of shortness of breath should have had them escalating things. Going private is probably the best way forward at this point.

Please keep us updated as you go along.

GeoffM profile image
GeoffM

I agree with what everyone has said. If in doubt phone either 111 or 999 if really bad. Getting back in the system keeps you higher up the list. Doctors are doing a great job but you know yourself best. I am still awaiting results from my diagnosis for rapid AF and next steps - sometimes you have to fight your own corner for your on peace of mind and reduce worrying about it. Keep phoning if concerned. Good luck

Sleepybear987 profile image
Sleepybear987 in reply to GeoffM

Thank you!!

in reply to Sleepybear987

I had to go private also as hosp refused to look any further into chest pain said I'd pulled a muscle when in fact had pericarditus and pleurisy put on colchicine and short course of ibuprofen I was very disappointed at nhs especially when my sister is a senior sister at the same hospital and she could not convince them to look further

Fifimyangel profile image
Fifimyangel

You know your own body and how you feel. Ask to see another doctor.

Sleepybear987 profile image
Sleepybear987 in reply to Fifimyangel

You see I already asked for another doctor but they said no as they would have to start the whole process of investigations again

Fifimyangel profile image
Fifimyangel in reply to Sleepybear987

Stick with it then. Continue to see doctors. Voice your concerns. Try not to get too anxious it will make things seem worse. Keep chatting to everyone on this site. We are all here to support each other. Take care.

Sleepybear987 profile image
Sleepybear987 in reply to Fifimyangel

Thank you (I got an earlier appointment so if they are being silly, then I'm gonna ask for a new doctor! So thank you <3)

Ianc2 profile image
Ianc2

Give yourself an MOT. Check your weight against you height. Have a look at your BMI. Is your waist half your height.? Your weight is crucial in over loading your heart.

Have you had your blood sugars and electrolytes checked?

Do you drink coffee/ alcohol, take recreational drugs?

How much continuous exercise do you take every day. like gentle walking? Do you eat a lot of sugary food? Have a sedentary job?

Sleepybear987 profile image
Sleepybear987 in reply to Ianc2

Yeah weight has nothing to do with this but thanks

Flummoxedlou profile image
Flummoxedlou

I agree with Ianc2, get yourself armed with a BP machine, oxymeter and thermometer. Go to the chemist and get your weight, blood sugars checked - my pharmacist does that. Eat and drink healthy and avoid 'triggers' - stress, coffee, sugary crap, overly fatty foods. Keep a log of morning and night readings so you have it ready to hand, then also diarise your symptoms so that if a pattern emerges you can see it. Don't fixate on it obviously but it arms you with information that helps your GP and he/she will take you seriously if they see you are trying to help yourself and concerned. Don't wait to call 999 because of fear - I say that but of course I do exactly the same - if you feel unwell and your chest is painful then call - better than taking the risk you may become very ill, the ambo crew at least will do an ECG and reassure you of the traces they can see - my sister is ambo crew and most have tons of experience of this and you will know if they are concerned too. As standard practice they will sweep you to hospital for a check up and at that point you are in the care of the hospital and its consultants and they are obliged to investigate. The problem is we are all sat waiting for the hospitals to resume normal working and that is going to take months. You say you are shielding, as I am, but you are very young and you deserve to have this sorted out so you can resume a normal life. I had three visits to hospital before and after Christmas and didn't catch covid - I was exceptionally cautious with hand washing, masks etc. and the staff were brilliant. Call your GP and ask for help, tell them you are worried and don't be put off. Unless we all make a stand for help then we will sit in limbo - I sound like an activist! Wishing you lots of luck and good health.

Sleepybear987 profile image
Sleepybear987

Thank you for the help and the advice.

I wanted to update you all. I've called the doctor. They said they're going to order some blood tests and they're going to message my consultant. I'm a little disappointed with how they dealt with me because it was almost as if the doctor was talking down to me. As if I don't know my own body. I'm going to email a few people, including my consultant if I can get an email.

And I wanted to add - this isn't anxiety. I WISH it was anxiety. This type of thinking is what led to me leaving it until the problem got worse. And even if it was, anxiety can be dangerous. Anxiety can cause things like strokes or other health complications. Additionally, regardless of my weight, this shouldn't be happening. Losing weight is not a solution to heart palpitations.

But the rest of you are right, I'm very young to be experiencing this and I'm hoping that it's something that will just pass. I just highly doubt it considering how this week has gone.

Qualipop profile image
Qualipop

You should not have to go privately. I'm afraid there are still an awful lot of doctors who look at age first and decide you are too young to have problems so you need to be persistent and demand answers. Write to the consultant and tell him that he might not be worried but you ARE and you are not happy being delayed so long, that this is affecting your entire life and you need help and answers now. Keep it polite but very firm. Meantime try to get some answers from your GP or from the BHF nurses and don't let anyone fob you off with the "too young" or "just anxiety" excuse.

isobelhannah18 profile image
isobelhannah18

I agree with montmax1. Ring 999. Also keep pestering your G.P. for an earlier appointment with the cardiologist. Stress and anxiety could be contributing to your symptoms. After my completely unexpected heart attack my anxiety levels were sky high and gave me lots of physical symptoms. I had a course of C.B.T. on the N.H.S. and it really helped. This forum really helped with support and advice.

Sleepybear987 profile image
Sleepybear987 in reply to isobelhannah18

You're right, this forum has already convinced me to go to the GP and bug the hell out of them. I hear you about stress but this incident in particular was exacerbated by exercising and other activities. But the ball is *slowly* rolling to getting a diagnosis so I'm so grateful for the help on here.

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