I don’t get it??: Hi everyone, well I... - British Heart Fou...

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I don’t get it??

Bluebell67 profile image
29 Replies

Hi everyone, well I had a call from the cardiologist this morning. 5 minutes of his time was all I got and well, I was diagnosed with CAD in December after results from the ct scan showed moderate stenosis in the LAD and circumflex. Apparently today the specialist has decided the chest pain I get isn’t heart related at all. He says he’s looking at the scan and I have no narrowing of the arteries at all!!!!

So what about the letter I have that says the ct showed mixed morphology plaques and stenosis in 2 different arteries. And what about the pain? If it’s not heart related why do I feel like I’m being stabbed in the heart??? And why continue to keep me on medication?

They’ve decided to do a treadmill test, no idea why as I’m not getting pain upon exertion or anything so really do not know what is going on. Feeling frustrated and worried.

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Bluebell67 profile image
Bluebell67
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29 Replies
Bluebell67 profile image
Bluebell67

Yes, I can understand the treadmill test but just don’t understand the change in diagnosis when the consultant is looking at the same ct scan as he did when he diagnosed me the first time round. Just confused how they can change diagnosis without any further investigation to confirm things 🤦‍♀️

Silvertail profile image
Silvertail in reply toBluebell67

I hear you. I had a CT scan of the heart at one hospital and they said I had 50% blockage of the LAD. Afterwards I had a nuclear stress test at an excellent heart and lung teaching hospital and they said they couldn't find anything but some scarring at the bottom of the heart.

arTistapple profile image
arTistapple in reply toSilvertail

Reply to Silvertail AND Bluebell67. Can I just say that post heart attack 2002 plus continued problems (never sorted out with any heart meds and virtually disappeared when commencing levo) I have had a similar observation. The scarring/not working bit of heart (bottom of heart) has been observed but ‘they’ don’t know why. It showed up as a heart attack PRE heart attack on ects and nobody refers to THAT. My view? Scimpy jobs. No-one really looking. No-one really caring. Sounds like your cardiologist, even with only five minutes is more interested than most. Now that I understand so much more about hypothyroidism I see my scarring/not working bit as having been there as far back as 1985 when (with hindsight) I had a Hashimotos flare up which went on and on and on. Hospital thought gall bladder and heart never checked. Probably not thyroid either!

arTistapple profile image
arTistapple in reply toarTistapple

Reply to self and anyone wondering where the heck this contribution came from! Apologies I thought I was talking on the hypothyroid bit of the forum. Hashimotos is an illness of the thyroid. Sufferers can go for many years undiagnosed and/or considered to be subclinical and not worth treating. Luckily for younger generations the research now covers this BUT doctors are way behind the curve and continue to ignore new information. If I had been treated 25 years ago I would not have had a heart attack and ‘lost’ 25 years of my life. I would have trouble proving any of this to a profession that just does not listen to the patient. I find it highly curious that doctors are not highly curious.

Hello :-)

It is not right they give us these mixed messages as well as I wished they would not bother phoning if they have no time to talk us through things I would rather wait till they have !

But whatever the reason the news is not as bad as it could be and you will have this next test and see what develops from that

Start making a list though of all these questions you want to ask and not sue when your next appointment is but start it of by saying I need these questions answering

You could try the BHF Nurses and see if they can shed any light on this confusion ?

Let us know how you get on :-) x

uzininemm profile image
uzininemm in reply to

Sorry but do you really think they will ever have the time to speak to us as you like when the waiting lists are so long? I am afraid this is the new reality even if it's not ideal or liked.

(I had a updated heart scan in Feb and other than finding out a letter had gone to the doctor, and that the consultant wants a face to face with me, and may ask for another MRI, I have heard nothing else! Yes it would be nice however as I am feeling no different I am not worried).

in reply touzininemm

Sorry for been such a fool and thinking they would even though there is no harm in asking even if it is a no if you don't ask you will never know as I have asked and been given a call or an appointment and can only speak on my own experiences and sorry this obviously has not been yours

Glad you are keeping well

Have a lovely day :-)

uzininemm profile image
uzininemm in reply to

You were not being a fool at all.

You are right there is no harm in asking but just for balance I just thought the 'I wished they would not bother phoning if they have no time to talk us through things I would rather wait till they have it' would mean you would have a very long wait indeed.

Having worked in public service for decades and now working for the opposition I fully know that 'customer care/service' is not like it was in most cases, (I was one of the old school). I wish we would all have our needs met immediately however the reality I think (believe) is completely different.

in reply touzininemm

Hello :-)

I personally do wish they would not phone if they only have 5 minutes but usually you have an appointment and if you do I have found you get longer but as said we all have are own experiences

I have to say I have been lucky maybe ? in one respect

I have always been given time to ask what I need to and get the answers I need as well

I agree old School was the best in so many ways but times are changing and not always for the better but we have to find a way round it and I do always remember my Mums famous words

" If you don't ask you will never know "

And she was right !

uzininemm profile image
uzininemm in reply to

Mums are always right (well 99.9% of the time).

It would be interesting to know if there are set times they are expected to spend with a patient and how many patients they are expected to communicate with in an hour (including the time to read the notes and then to write the follow up).

I think sometimes it is luck who you get, my first consultant took exception to my reaction when he told me I had heart failure as I laughed. It wasn't a funny ha ha laugh it was one of them stunned you must be joking laughs' with me thinking how did that happen followed by 'failure' I know that is serious and how many days do I have.

Lucky for me a nurse on the ward spoke to me and put me at ease.

The second (my current consultant) is much better.

in reply touzininemm

Yes Mums are always right :-)

I would imagine they would be set a certain time to speak with us but then I suppose it depends

Like when the pandemic was rife they were doing so much more via phone and I think you got allocate a certain amount of time then

I understand that nervous laugh I do it but I say as I am laughing I am not laughing laughing as if this is funny it is what I always say a nervous laugh especially when you do not know how to react because of what has just been said or happened

I will make you sit and think now but because I am so anxious my own Doctor phones me twice a week to check in and my Surgeon who has been fantastic a year later still phones me every 4 weeks to see how I am doing she even heard while she was away I had been struggling and gave me an extra call to check on me

I think sometimes it can also depend on the Doctor , Consultant and Surgeon you get and even though I would not class myself as a lucky person I got the best especially my Surgeon so there are still some good one's out there if you are lucky enough to get one :-)

uzininemm profile image
uzininemm in reply to

What it does show is what a decent person you are, if you weren't they wouldn't bother, and certainly from the surgeon's perspective I would imagine that to continue contact like that is perhaps bending the rules! (I know for my 'good' clients I was always willing to go that extra mile even when officially I no longer d/w them, (it was against the written rules but had my bosses blessing as they saw the real value from doing it!)

One of the things I remember from my previous job was going on a interview skills course and being told never say you 'understand' when talking to a client, as you can never know the full circumstances of the person who you are dealing with, it is something that remains with me 20 years on and I always try to remember it.

I say that because whilst in the past I have had mental health issues I have no issues since my heart problems (accept the odd momentary blip), I don't really know why but in my head I put it down using my previous experiences of my 'black dog' and the fact I have been given a second life.

I say this because I could never understand your position, and therefore can't comment or offer any constructive advice other than I do hope that things do improve for you.

Milkfairy profile image
MilkfairyHeart Star in reply touzininemm

It's so true, the most empathetic healthcare professional doesn't know how it feels to be a patient.

They can acknowledge the feelings however not truly understand.

That's why peer to peer support, sharing our lived experiences is so important.

Btw BeKind is the ' forum treasure

Exie8 profile image
Exie8 in reply toMilkfairy

Some healthcare professionals do know how it feels to be a patient !

Milkfairy profile image
MilkfairyHeart Star in reply toExie8

I agree, when they have a lived experience of being patient.

in reply touzininemm

Hello :-)

Not sure if I am a decent person or they just think I am the biggest wreck they have come across but one thing I am sure of is I appreciate it so much what they are trying to do for me and their support

My Surgeon maybe she is breaking the rules I am not sure , I think she will have checked though she is an Honorary Surgeon at that so I am sure she would not do anything she is not suppose to and I have to say she is the most kindest , caring human being I have had the pleasure to come across she actually does go that extra mile and some and she genuinely wants to you can tell

I had before my heart issues as we say Mental Health problems and wished I could now say they had gone but regretfully they have got worse and yes I have tried everything and so much more

Thank you though for hoping things will improve for me , I appreciate that :-)

Hope everything carries on going well for you to :-)

Anon2023 profile image
Anon2023

Hi. I’m not surprised that you are feeling frustrated. Who was the original letter from or was it a scan report? I would ring the cardiologists secretary and ask for a further telephone consult with them. You can but ask. Good luck.

Bluebell67 profile image
Bluebell67 in reply toAnon2023

The original scan report was from the exact same doctor I spoke to on the phone last week. And today I have just received the letter from him. He has completely misunderstood what I said to him. He says I started the gtn sometimes works but sometimes doesn’t. What I said was that I take the first spray and sometimes it Works and sometimes it doesn’t so I take another one!!!They now want to prescribe omeprazole. So as I know something about this med he’s obviously looking to stomach issues which I haven’t got!

The new diagnosis is non obstructive coronary atheroma and says we can draw a line under this now. Can I find any uk information on this issue, not so much.

Still feeling extremely frustrated 😫😫😫

Anon2023 profile image
Anon2023 in reply toBluebell67

I’m not surprised that you are feeling frustrated. You have a few options. You could speak to PALS and ask for their help. I’m not sure what they could offer in these circumstances but you could ask. You could also write to the cardiologist and ask your questions. If you write then it makes it difficult for him not to reply (a copy of your letter would be attached to your records) but it might take a while. You could also go via your gp and ask them to get answers to your questions, if you can get a gp appointment that is.. In terms of your new diagnosis the BHF nurses might be able to provide information. They can be contacted on 0300 330 3311. If you go on the BHF website there is also an online chat facility. I think most of us get prescribed omeprazole to protect our stomach from the myriad of meds that we take. It’s usually just a precautionary thing but you are entitled to ask your gp why you have been prescribed it. I’ve always been a bit reluctant to be assertive with health professionals but I’m quickly learning that I need to be, in order to get answers. Good luck. X

Milkfairy profile image
MilkfairyHeart Star

I live with vasospastic angina, I have no blockages in my coronary arteries.My coronary blood vessels go into transient contrictions causing a lack of blood supply to my heart muscle.

I have also faced Cardiologist saying I couldn't have cardiac chest.

I had a specialised angiogram which showed the coronary vasospasms.

Unfortunately microvascular and vasospastic angina are poorly understood, under recognised and often overlooked.

As you are still having chest pain I suggest you ask if the Cardiologist could consider all possible causes of your chest pain, including microvascular and vasospastic angina.

Perhaps even ask for a second opinion.

Bluebell67 profile image
Bluebell67 in reply toMilkfairy

Apparently my cardiologist wants to draw a line under it after now diagnosing non obstructive coronary atheroma. I would like access to my ct scan so I can ask for a second opinion privately but unsure if I’m allowed that!

Milkfairy profile image
MilkfairyHeart Star in reply toBluebell67

Has the Cardiologist explained how and why they think you may have non-obstructive coronary artery disease NOCAD?

There are 2 types

Microvascular angina which is caused by the inability of the small blood vessels to dilate, or stay stay dilated in response to extra demands like exercise.

Vasospastic angina which causes transient contrictions of the coronary arteries.

Also some people have vasospasms in their small blood vessels.

A CT angiogram will not be able to confirm a diagnosis of microvascular or vasospastic angina.

Microvascular and vasospastic angina are complex conditions and require the input of a knowledgeable Cardiologist.

I hope your Cardiologist has not decided to try and discharge you ?

I suggest you ask for a second opinion from a Cardiologist who understands NOCAD and who will arrange the appropriate testing.

It's important to have the appropriate testing as the treatment is different for each condition.

You can ask for a copy of your medical notes and all test results.

Contact the Patient Advisory Liaison Service PALS of the hospital to make the request.

Here's some more information from the BHF about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo....

This website was written by 4 patients with over 50 years combined experience of living with angina non obstructive coronary arteries ANOCA another term used.

They are supported by 30 World expert Cardiologists.

internationalheartspasmsall...

Where in the UK are you based?

If you are prepared to travel there is a research study taking place at St Thomas's Hospital in London.

You can contact the researchers yourself. The contact details are at the bottom of the article.

isrctn.com/ISRCTN94728379

Bluebell67 profile image
Bluebell67 in reply toMilkfairy

Hi, with the sounds of the letter the cardiologist is discharging me. I am concerned as they seem to be passing this heart pain off as stomach related which if it were not for the ct scan showing moderate stenosis in two arteries then I would have given that possibility some thought. I think I will make an appointment with my own doctor and ask for a second opinion.

Thank you so much for the links, I really do appreciate it. You’re a star ⭐️

I have to say 5 minutes on phone is not good. My cardiologist has been very good. She was there at my mri and had a chat afterwards. Also sent out mri report after 2 weeks. So I think iam very lucky. Regarding the stress test it is worth doing. I have had one which required me to be on a bike all rigged up to a computer. That's where they found I have cyanosis when iam under pressure. Due to my congenital heart defect. Just one thing, I did manage 7 minutes before my muscles in my legs got tired. So I stopped. The nurse did not stop me. And basically from that test they got alot of information. The longer you can go the more data they can get. 8 to 10 minutes is optimum. So I did not do too bad.

statinsinthebin profile image
statinsinthebin

im sure sometimes they just try " to swing it".i recently had a phone chat with a NHS cardiologist,he told me "keep an eye on your ldl"

i told him it was in the so called normal range,

"well keep an eye on your blood sugar"

i told him there was no problem there either.

he said "speak soon" and hung up,

although i cant prove anything,i got the feeling he wasnt even looking at my notes!

Bluebell67 profile image
Bluebell67 in reply tostatinsinthebin

I actually had the same feeling!

BARTLETT1965 profile image
BARTLETT1965

Totally understand. I have the same problems and I had for over 20 years since informing GP. I’ve had all test and all came back clear except for heart spasms and unstable angina which was diagnosed about 3 months after having heart attack and stroke in 2008. ( then it was over turn following month by a consultant looking at same results as the director of cardiology) Then last moth they found the abnormalities in ecg

This is near on 25 years on.

My problem I’ve been told that there isn’t a problem , I refuse to attend hospital with the pains, but now the new cardiologist has told me to attend any time I get pain to do some blood tests.

But feel I would be in hospital more than at home if I did that.

Good luck on getting sorted

Prada47 profile image
Prada47

Sorry but it looks like you are going to have to live with it, I try to work on the basis I sometimes have uncomfortable episodes but they have never developed into anything more serious. MRI and CT scans are not easy things to give a 100% assessment of coronary arteries. Just try to rest assured that doing a Bruce Protocol will give you a good diagnosis one way or the other or lead into an Angiogram.

The system is stretched but I don't understand how a phone consult is the way forward. My personal opinion is within 10 years the NHS as we have known it will disappear, it is happening now before our eyes. It looks like there is a deliberate policy of overloading A & E i.e. You can't see a GP so hey ho lets go to A&E.

Regards

in reply toPrada47

I must just say that my personal experience with the NHS over the years and more recently has been of a very helpful, supportive and speedy response.

My NSTEMI a year ago today resulted in six days in hospital whilst they tried to understand what brought it on and despite all the different machines it was agreed I was a healthy individual that did all things well, low cholesterol, good blood pressure, strong regular heart beat, good blood flow, but I was one of the unlucky people (around 12%) who have an unexplained HA and that in the future, with more research, the cause may become apparent.

More recently I have been sent for urgent cancer referal and again I was seen promptly despite first appointment being cancelled on my way there (very early in the morning) as surgeon tested positive for covid. Second appointment was quickly arranged and I was in and out. When operation site swelled they were reassuring and took time out to call me to check I was ok. A followup appointment happened really quickly too so now just the waiting game for the biopsy results to come back.

So for me the NHS is an absolutely precious resource doing a fab job. However my six week cardiac discharge phone call has not happened yet due to number of patients, but again thats not a concern as i am feeling fine and it seems only right my cardiologist is concentrating on those that need him the most.

My own GP surgery has been great and yes I did get an prompt appointment on the day I rang as I said I preferred face to face rather than phone call, he obliged.

Apparently according to the news our health services down here are the most stretched as we are full with holiday makers swelling the population masively. So they certainly get my praise.

I trust it gets better in your area soon.

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