My partner came home from work in March 21, very breathless. After a long time waiting for tests we were told he had a thickened heart due to having high bp for 30+years. Then we got told he had mild mitral regurgitaion and 41% ejection fraction. The result was a diagnosis of heart failure. 2 months ago, he had a cardiac MRI, an unexpected phone call last week to say everything came back fine and he does not have heart failure, but they now think he has had an episode of myocarditis. We are very confused, hes tired and weak all the time, breathless on exertion, e.g. pegging washing out! His bp is low, due to meds hes on, experiences dizzy spells, is very anxious. He still has not seen the consultant, and has been told there will be a face to face appointment in a couple of months. What on earth are we supposed to make of this??, my partner is a 62 year old male!
confused......is not the word! - British Heart Fou...
confused......is not the word!
Hi 29Tufty. Welcome to the forum. I am so sorry that you and your partner are experiencing this. When I read it my first thought was that you had been treated appallingly. I’m wondering who provided the first diagnosis and what tests did they carry out to reach their conclusions? . If it was as a result of an echo report then they can be quite subjective and can be misinterpreted. From what I can gather an MRI is much more accurate. Even so, it’s terrible that you’ve not seen a cardiologist although, unfortunately, I’m not surprised. I was told over the phone that I had heart failure by a nurse and that I won’t get to see a cardiologist unless I’m hospitalised again. You need to push to get answers either via your GP or by calling the cardiologists secretary and requesting a telephone consultation, if a face to face is not available. Do you have access to cardiac nurses? If so, try them too. You could also try PALS if you get nowhere.
I’m not surprised that you and your partner are feeling so confused and frustrated. I’m learning very quickly that those who are most persistent tend to get better care even if it goes against the grain to be that way.
I don’t know anything about myocarditis but I’m sure someone on this forum will be along shortly to give you information. They are a very kind and knowledgeable bunch on here. Good luck. Please let us know how you get on. X
Hi Anon2023, Thanks for your reply, it is much appreciated. My partner had a phone call from thehospital, to say "you have your new patient appointment with Dr .... on the 3rd of October. My partner said he had been under this consultant for tha ladt 18 months, the lady reied and said well uou are down as a new patient, is this appointment ok for you? So very soon he will see the consultant he has spkmen to once in the last 18 months. Hopefully we will get some answers, as we have a long list of quedtions. Thanks for your post, I will be back once we have seen the consultant. 😏
Hi. I’m really pleased that he eventually has an appointment. As you say, it’s best to write down your questions and be assertive about getting answers. Make sure you ask how long his next review will be and see if you can get an email address for the cardiologists secretary incase you have any further questions. It’s hard for them to refuse this if you put them on the spot. I really hope the cardiologist is able to answer your questions and give some reassurance. Good luck. 😊.
Hello & Welcome 
It is so confusing when one minute you are been told one thing and the next you are been told another but meanwhile in your case your partner is not feeling very well
I have been there and could tell you my story but this is about your partner but trust me you are not the only one that has been through such a confusing anxious time
I am sorry as well your partner is feeling anxious , I have always been an anxious person now I see myself as a total wreck and if I knew what I knew now I would have done more to try and prevent this happening
I am wondering his Consultant was it the same Consultant that has kept coming back with this conflicting information or has he seen more than one ?
There are a few things you can try and do
Ask for a second opinion if it is the same Consultant that has kept giving you this conflicting information
Ask to be referred to a different Hospital even though this may not be ideal as you would have to go through the tests again and the waiting
You can phone the Consultants Secretary and tell them how ill your partner is and you need to speak to the Consultant sooner than the appointment you have been given pointing out how low his Blood pressure is and the concerns this is causing
You could contact Pals but as they seem overloaded with complaints nowadays by the time they get yours and it was looked at the chances are you will have had your appointment and hopefully got the answers you need , Pals will not be able to get your partner seen sooner they are there to deal with complaints but after this has all been sorted which it will be if you are not happy with how things have been then you can put a complaint into Pals but I would concentrate on trying to get your partner the right diagnosis and treatment first
You need to start writing down all the questions you want answering like why was he told this and now something different and can they explain why the first diagnosis has changed to this one and so on
Writing it all down is a help when you finally get to speak to someone as we can tend to forget or they can talk over us but that list in front of us is a good reminder and makes sure we do not forget anything
Meantime he really needs to speak with his Doctor it seems as you say the medication is making his BP to low and having to lower BP can be as bad as a high BP so that needs sorting now it will give him dizzy spells if it is to low so his Doctor needs contacting as soon as possible
Some medications can make you feel breathless I am not sure if he is on Bisoprolol but that is one that for a lot of us can make us breathless and of course anxiety can make us feel this way to and at the moment he feels dizzy , breathless , that causes anxiety which has the same symptoms and so it feels like a merry go round that you cannot get of
Tomorrow I would get him that Doctors appointment and tell them he needs seeing now not in a months time not only can they look at his meds they may email the Consultant if they have any concerns and they could possibly be able to shed some light on these conflicting diagnosis that he has been getting
You will get the answers you need and things will get sorted but push as much as you can to get listened to now
Of course if you have any concerns about how he is you can go to A&E or phone 111
I do hope this gets sorted soon and your partner will be feeling so much better
If you have time let us know if you get any answers and how you both are x
You are absolutely right. I have definitely noticed a decline too. For most of us it feels very uncomfortable to demand better care but it’s either that, or be forgotten. It’s a truly terrible state of affairs.
Hello
Yes I know A&E is overwhelmed but if someone is feeling dizzy and breathless and starts getting any worse then that is the place to go
I left messages with my Consultants Secretary and I suppose they are all different but I would get a call , it might be how you word your message to them I am not sure but worked for me
Hope you enjoy the rest of your evening x
I totally agree go to a&e I did last year was kept in over night as troponins levels weren’t quite right went in with chest pains got discharged and said I would get a follow up appointment in out patients I knew something wasn’t right with me went back the next day with the pains again they couldn’t figure out what was wrong as my ecg was fine but a angiogram thank god as I had a heart attack and needed a stent fitted now on meds but feel fine
Hello
Sorry to hear what you went through very similar happened to me 3 times so if in doubt it is the place to go Hope you are feeling well today x
My last visit to A&E when having chest pain was a case of waiting 7 hours then told I would be admitted, then cardiac nurse kind of saying, "Well I doubt you want to stay as people are waiting 24 to 48 hours for the beds, sat waiting in a bust a&e chair" I then said I am never coming here again ... sooo Terrible experience.. At first I could not even get a seat and had to stand with low BPM and BP going very dizzy.
Hello
Sorry you had such a bad experience going to A&E but I would still always go if in doubt as I have had a few bad experiences myself but there was something wrong on most of my visits so glad I stuck it out
Hope you have a nice day x
I am battle weary, we still have the tribunal for PIP yet as they didnt award it because "we agree with heart failure diagnosis but there are no symptoms on his gp records" I sent a 4 page letter to the GP and still have not heard back ftom 4 months ago. Its hard work, We can request a sick note which they are doing for 2 mo ths at a time, but still no face to face. I am strong and have stood my ground, but I am gobsmacked right now with a phone call out of the blue, for my partner. Good News, the junior doctor said, your heart scan is fine, but you will see the consultant in the next 2 or 3 months.. Thanks for replying to my post, its all very helpful to me.
The thing is we cannot really talk about the NHS without being political and we all know how the government have damaged the service. Appalling... The NHs standards need to be enshrined in constitutional law that we lack to protect all targets above all is. Health is important to everyone and should include care. From thereon all over vital infrastructure like energy should be ensure they have overcapicity. Anyway I will shut up now as going off topic
Whilst reluctantly being off topic I disagree about with the comment that you can't talk about the NHS without being political. The simple facts are that the NHS consumes about £150bn of UK tax payers money and rising , and during the pandemic was given additional extremely large sums to see it through. So there is no deliberate effort to starve it of cash and/or run it down. The problem is simply how that money is managed. Although front line staff and equipment are usually first class, anyone who has dealt with NHS on a face to face basis will see and be affected by the inefficiencies within the NHS. I certainly have. Two people to do a job where one could do it , support staff chatting when they should be working. Administrative blunders. And that's what is obvious, what about behind the scenes? No wonder the NHS is one of the largest employers on the planet. All that said the NHS is so large that any attempt to make sweeping changes as whole are doomed to failure in my view. Its like shuffling the deck chairs. And because the NHS is usually viewed as a much loved national institution by the majority, any attempt by any government to wind it down or starve it of cash would be political suicide, so the solution is usually to throw yet more money at it.
And so finally the main reason the NHS is in such a particularly parlous state at present is mainly due to the recent pandemic which has further exposed NHS frailties, and notably allowed front line services to hide away from the very people they are intended to serve.
Well said. What a refreshing change from the perennial lazy thinking that says the NHS has been starved of cash. It hasn't. It has a voracious appetite for consuming more and more resources every single year. Remember the additional £350m a week promised for the NHS? It's had that and more. There are wonderful people and brilliant work being done every day by the service. The management and administration of it leave a huge amount to be desired and need to be tackled.
The NHS Constitution which applies to England only, does enshrine some standards and rights in law.
It makes interesting reading.
My husband has problems to and was referred to see a cardiologist urgently only to find it would be a 16 month wait. He had a heart attack in 2007. We paid private to see a cardiologist which cost us 200 pound. It was well worth it as my husband needed more stents and as he is still having problems he is waiting for another angiogram in September under the same cardiologist we saw as he is still having unstable angina which does not go away with the gtn spray, however when he goes to a and e nothing shows up other historical on ecg and troponin levels normal. If you can afford it I would go private for an initial consultation you can look at what they specialize in and then book up on line you do not need a doctors referral. By the way my husband is only 59. All the best and I hope something gets sorted soon.
Hello.I'm sorry to hear about the problems that you are experiencing.
Are you able to have an initial consultation with your Consultant on a private basis? You can then go on his/her NHS list and any tests can be arranged through the NHS.
When I was originally diagnosed with AF, this is what I did.
The initial consultation fee is more affordable than you think. (I paid about £250 six years ago).
Good luck to you.
Thank you and yes the consultant did all the other procedures on the NHS apart from initial consultation. He probably saved my husbands life as when he was re stented his artery was like a pin prick it had narrowed so much it was 99% stenosis and he was getting major problems. All the best to you.
Thank you so much for all your messages with some great suggestions. Its so good to hear that people have already (sadly) experienced the same things. I am very grateful to everyone, I shall keep plodding on and I am sure we will get some answers soon. Sincere thanks. 💙
I'm afraid for us hearties there is usually a long wait for treatment. If I hadn't hadb3 private consultations I would still be waiting for the ablation I had 3 months ago.I was put on my private eps waiting list on NHS so 8 month wait.
I understand your frustration and lack of contact with the health service. Could I just stand up for the health service as a nurse who spent 42 years in the service. My son who is a consultant tells me he and his colleagues are exhausted fire fighting on the front line with all that demands that brings. Perhaps this all boils down to lack of money to recruit nursing/ medical staff ( all who all need training & support)
The people who work in the health service do have a life outside with the same demands we all have ie wives,children & keeping up to date with continuing professional development which is mandatory, also god forbid elderly parents !
I have co morbidity now, suffer and share some of your frustrations
I would love to see the day we have a cross party agreement and road map for the health/social care system
Hi Clipperkid, Thank you for taking the time to post that message. The NHS as an institution is chronically underfunded. The people who work in the NHS are all to be praised and blessed for everything they do, believe me I truly appreciate everyone of them. My dad had cancer for almost 3 years before he died and the people in the NHS, inc paramedics, were phenomenal, i dont have the words to praise them enough. My post certainly wasnt a rant at people, but the systems in place that make the wait so long, its very difficulut for not just my partner but my daughters who are worried about their Dad. I am confused with conflicting information, however I feel much better after reading all the different replies on here. My daughter is a childrens social worker on amazing wages, but, the hours she puts in over her statutory hours work her wages out to a not so good rate, Loads of pressure and not got time to do what she needs to do. My other daughter is training to be an Education Mental Heath Practicioner, anithrr role that is thin on the ground but much needed. I work in education, another sector that requires a lot, massive changes during the pandemic, adjustments all roud then dealing with kids with the fallout of the pandemic. I do understand our People in the NHS are amazing and deserve so much more in conditions and pay, so thank you for your service, thank hou to your son, I wish you the very best in life and thank you for your comment. 🙏
Please do not for one moment think I am here to put down the people who work in the NHS, I am not. I am very glad we have duch wonderful people working for the NHS. Thank you to everyone who has commented on my post, every answer is informative and I am getting a clearer picture of how things work now. Thank you. 👏👏❤️💛💙
Hi Tufty,
I've also been recently diagnosed with suspected myocarditis... I had an MRI 2 weeks ago but still no word about results unfortunately.
My first "episode" was beginning of July, but since then have found my symptoms have changed quite a bit, I still get chest pains, but have had to go back to hospital with dizziness and pins and needles etc. It's very tiring... but they did lower the blood pressure medication dosage to see if this helped. I'm no longer lightheaded, but all other symptoms are still there. I had an 8 hour stint working (desk, from home) yesterday where all I did was talk and listen... it wiped me out, all symptoms flares up again. Sometimes it stops me from sleeping. And the anxiety that comes with it all is unreal.
Imagine you've done something similar, I've googled the hell out of myocarditis and there's not really much out there... information is usually repetitive but nothing helpful. The consistent message seems to be rest, rest and rest some more... I've been advised 3-6 months recovery, some seem to recover in weeks, some seem to be longer.
Sorry, this isn't much help... but wanted to post to show you and yours aren't alone. Take care.
Very helpful, every message is appreciated, I am learning a lot on here. Thank you for the message. 💜
So there is a really long line of people waiting to see the cardiologist. So somehow you have to become a priority. I would go see my GP and tell him/her point blank your not accepting this and demand action. I did exactly this and got immediate attention to find out I had either pneumonia or cancer. Luckily it was not cancer but had treatment plan immediately. You can wait around getting anxious or do something to draw attention to yourself.
Is it queue jumping. Who cares. Get yourself sorted is the most important thing to you.
Don't be fobbed off.
Yes. Always persist. It's your health on the line, nobody else's. Heart disease and long waiting times are very uncomfortable companions. Be a nuisance.
Yes Anon2023 is right, make a fuss and maybe you will get some help from NHS, otherwise don't hold your breath
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