Log in
British Heart Foundation
10,400 members6,314 posts

Appointments & tests next week

I have my appointment with my consultant cardiologist tomorrow afternoon, not really sure as yet, what I want out of the meeting. In fact, yes I do. I want answers. I want to know why I am suffering with chest pain on a daily basis. I want to know what can be done interventionally to remedy this. I want to know how quickly this can be achieved and by whom.

What I don’t want is more medication. What I don’t want is more re-assurances that it’s nothing to worry about or as bantam12 quite rightly stated a ‘pat on head’ from him.

This is the NHS 2019, I deserve a concrete diagnosis and I deserve to be able to function without chest pain on a daily basis.

I’m sure I’m not alone in contemplating tests/ appointments next week. I was just wondering what other people expect to achieve in the aforementioned next week.

58 Replies
oldestnewest

I so feel your frustration. On and on it goes with no answers from medics. I have been having scans tests, many and various ones and still no answer to my excruciating chest pain this last four years, including trips to a and e. Perhaps I am imagining the pain, not. I have been referred for chronic pain management who suggested CBT and other self help strategies. They even suggested I need a goal like booking a holiday, argh.

Do these people think they are speaking to kids, as a capable adult all I am asking, like you, is some answers and a proper diagnosis. Not too much to ask for is it in 2019, although apparently perhaps it is.

I hope you get some answers next week and are determined to stand your ground. Good luck.

3 likes
Reply

Thanks meadfoot, I know I’m going to have to be assertive with him because if not I’m going to come out of there with yet more medication and no answers 😔

I take more medication than a lab rat 🐀 as it is.

2 likes
Reply

What if there is no answer?

I saw my lovely Cardiologist on Friday.

He has had the challenge of trying to treat my vasospastic angina for 7 years.

I emailed him a paper from Prof Colin Berry's team in Glasgow before my appointment. Which he had read and really liked.

I took a list of questions to ask him he was so keen to look at my list he kept trying to take it away from me ....No it's mine I said.

Outcome. My ECG is showing ischaemia again, I am maxed out on oral nitrates and other stuff. He added daily injections of heparin for 5 days then it's time for hospital for me early next week if my spasms don't settle.

He emailed me at 6pm as he set off on holiday to go through my care plan with me again.

Cardiologists know very little about pain management. They also need to see beyond the blockages and recognise vasospastic and microvascular and just how debilitating it can be.

Doctors find it really challenging not knowing how to fix their patients and cover for their lack of knowledge by either discharging the patient, transferring them to another specialty or behaving in away that means the patient asks for a second opinion.

We do need to keep advocating for yourselves.

Our pain needs to be acknowledged and treated appropriately.

I found attending a 10 week Pain Management course really helpful it wasn't about saying you are imaging your pain. I have lots of stratergies in my tool box to help me manage.

Time for a group hug, wail and tears of frustration.

😖😫😭

4 likes
Reply

Oh yea, forgot u where seeing the ‘lovely local devil’. I didn’t know you where that ill at the moment 🤱🧚‍♀️. U don’t fancy that neck injection then.. I might discuss it tomorrow. Because I need some pain free time just to have some restbite

Reply

Dunno 🤷‍♂️ whether to rope in my local MP as he’s shadow deputy. What do reckon ?

Reply

If you don't get any satisfaction tomorrow I would definitely contact your M.P.

good luck

Reply

I understand the respite.

That's why I'll go in for a week of IV GTN and morphine. It is the only time I am completely pain free.

I use a PCA patient controlled analgesia pump. I press a button and get a blast of morphine.

Needs the input of the Pain Management Team. They come to see me twice a day and are very good at reminding the Cardiologists about the importance of good pain management.

I then have input from my very special cardiac psychologist too.

Reply

Hi Gunsmoke,

I sense your frustration with the whole process, you are right about meaningless reassurances and pats on the head. I do wonder if going into the consultation with the aim of no more medication is helpful?

The reason I say that is it’s the right medication that’s important, not more or less. I was very reluctant to take any cardiac meds for my chest pain until I received a diagnosis, at that point ECG’s and troponin were negative. I was fortunate to be recruited into a clinical trial and vasospastic angina was diagnosed. Since then I have tried many different meds to control my chest pain with varying degrees of success, it’s definitley been a work in progress! I feel the most important thing is the quality of the relationship between patient and Dr, working out the next steps together. It sounds like you don’t have a great relationship with your cardiologist, do you feel they understand the impact your symptoms are having on your quality of life?

3 likes
Reply

Thankyou Tynemouth, I totally agree with you. I need to vocalize to him exactly how this is impacting my life. I’m starting to realign my ‘boyish’ notions of being cured.

I’m finding myself looking at random people thinking to myself, I wish I was them ‘anyone’ in fact. The constant feeling of is today the day... some people of this forum will understand wat I mean... it’s horrible, truly a living nightmare. It’s so unnerving & upsetting...

Conversely, I’m genuinely pleased for the people on this forum who have success stories around procedures involving stents/valves/ bypasses. It feels me with hope rather than despair.

I also agree Tynemouth that the correct medication can be the correct intervention. It just feels like failure, second best or settling... and as I write that, I think James don’t be ridiculous...

2 likes
Reply

James, I can very much identify with those feelings. My cardiac problems are secondary to my rare, auto immune disease, I had a 4 year diagnostic odyssey which entailed over 9 second opinions and travelling all over the U.K. to find answers.

At every new appt I allowed myself to hope, only to have them dashed. When I was eventually diagnosed and started treatment I expected a cure which didn’t happen. It’s a very emotional journey, thankfully I was referred by Occ Health to a Clinical Psychologist who really helped me come to terms with things.

There is a fine line between giving up and being realistic. I had adjusted to a new normal then in the past 2 yrs I developed the vasospastic angina and had to readjust all over again. My life is very different, I had to take ill health retirement aged 50 and lost my driving licence but being unwell has given me some wonderful opportunities as well.

I hope that your appt tomorrow is everything you need and want it to be. I hope sharing my story with you hasn’t come across as patronising, people don’t get it till they get it!

3 likes
Reply

No not patronizing at all, and it’s taken in the way it is given 😊. You really have been to the mill and bk.. I feel humbled in comparison.

This is going to sound like a bizarre statement. Even more so considering I’m trained in the ‘dark arts’ I cannot CBT myself around this at the moment, nor could it be in receipt of a psychological intervention. I’ve even considered re-gression therapy.

One eureka moment I have had from reading your post is that I need to transgress from relying on the medical model of care to heal me and consider the healing impact of the social model of recovery.

2 likes
Reply

We perhaps learn to heal ourselves.

Acceptance is not giving in.

Courage is not the absence of fear but the acquired ability to move beyond the fear....

5 likes
Reply

You are anything but ridiculous James. Those feelings stem from frustration and being not appropriately supported. A big issue which is evident from the many posts here is the amount of knowledge we all build. We are researchers absorbing much information and assimilating a lot of trends from the personal experiences of others on here. Wear your heart on your sleeve (no pun intended) make a list of the issues just as you told us, keep calm say you are doing everything on your part the exercise the diet taking meds as prescribed but you need some answers in order to understand and a plan to attempt to improve your situation of pain. Keep positive easier said than done but you are a caring person who needs some help yourself. Good luck with the appt.

4 likes
Reply

Thankyou Nathan, your words focus and motivate me. I think what concerns me is I’m becoming emotional and anxious about the whole situation. An ineffective combination in any clinical situation. I’ll probably come out of there on a IV drip of Bisoporol 😂

I feel like I’m going to see the wizard 🧙‍♂️ only to be told there is no magic. Only a cohesive mixture of cardiac medication😩

I think the minimum I’ll settle for is either a cardio angio or a myocardial scan or something that involves more radiation and a follow up appointment.

2 likes
Reply

Hi I finally got mine answered after being put forward for mri scan under stress .

This gives cardiologist the answered. Now waiting for my bypass . Why not go straight in with MRI !!! and save time on other tests .

Hope you get your answers soon

Take care x

1 like
Reply

Ah right, thanks jelliebean9. I’m going to mention that test to him.

Reply

Hi maybe ask were your bloods and ecg normal? I'm like gunsmoke123 having a tough time getting a diagnosis for my daily chest pain too.

Reply

Hi flowers

My bloods and ECG were fine.

I had chest pain at rest and just walking a little quick . Worse on excersie . After my first scan it did show stenosis 70% in 2 areas.

18.months and 2 stays in hospital and even more pills before getting mri under stress, this showed my cardiologist I need a bypass.

I knew stents were not an option for me . Hope you get sorted soon .

Reply

Thank you. My cardiologist said just ignore the pain it will resolve your ecg and blood tests are fine it's not cardiac. But i have had st depression in them.

Reply

So u had a cardiac CT angiogram scan not the traditional angiogram (carduac catheter)?. Many thanks

Reply

Had angiogram and again under stress, echo scan ,perfusion scan .mri under stress other tests I can't remember . I do understand not all chest pain is cardiac related and at the end of the day we have to them .x

1 like
Reply

He did say that to me. That I have to seriously consider that the pains not cardiac in origin.. I was like ‘ yea, yea whatever, when can I have the angio done 😆

Reply

Hi, The gold standard Test is an echocardiogram to ensure all is ok with your heart valves etc. Bloods of course and ask him for a Pro B blood test this will check for any cardiac muscle damage and can be done via your GP. You could also ask for a chest X Ray this will show size etc. of your heart. Your Cardiologist is the best person to chat with regarding your chest pain which can be intramuscular i.e. rib pain etc. Good Luck with your appointment.

Reply

Thanks for reply Frenchi, I’ve had a stress echo which came bk as normal. Which is great but also mega frustrating. I just want to know what’s wrong with my heart...

Reply

Hi, thanks for your reply. Ask if you may have had a virus ? they can cause pain - also you need to tell him when you get the pain e.g. on exercise, resting, eating, drinking. Something could be a trigger. SCPHN good Luck.

Reply

Thanks Frenchi, will do

Reply

Hope today's appt goes well. Fingers and everything else crossed.

1 like
Reply

Thankyou Calliope153..

Reply

Hi James. Hope everything goes ok today and you are able to get some answers and strategies that help you. Take care stay positive and strong. Zena x

Reply

Thankyou Zena, I will, I’m starting my prep work now..

Reply

Good luck with your appt. I hope you get the answers you need so you can move on. Nothing worse than being shifted from pillar to post. Hope the Bisoprolol IV drip is replaced by single malt!!!! We really need these moments of humour xxx

Reply

Lol, thanks Handel. I do believe humour can help with a lot of lifes woes.. I’ve never took my self to seriously..

1 like
Reply

Take a diary, write it all down, build a file. Helps concentrate minds.

Reply

Thanks Lanc2, I remember a posting ages ago that you posted this idea. I think it’s a great idea that’s why I’m prepping so I can take it along today.

Reply

There’s a core at the heart of this forum ( pardon the pun). That offer support through experience which is invaluable to us all on a daily basis.

I know this afternoon I have the support from the people on this forum ( as does everyone else ) going into every appointment, test, etc.

That makes me both lucky and proud to be a member on this forum guys 😢.

God I dunno 🤷‍♂️ wats the matter with me today, it’s like I’m oft to the gallows lol 😂.

2 likes
Reply

Good luck. Write all your questions down b4 u go in. And ask what do u think it is then??? What makes u think it's not cardiac??? That's what I'll be asking. I've got my ct angiogram on Thursday. Hopefully we will both be more informed soon. Lets us know how u get on.

1 like
Reply

Thanks flowers9, I will

Reply

Hope you get some answers today and that you are able to take someone with you. Second pair of ears ... always helpful ! 👂👂

1 like
Reply

Thanks Penfold_5, good idea 💡

Reply

I hope all goes well today. Getting to see a consultant was the turning point for me.

Jo

1 like
Reply

Thanks Happyjo, I’m just repeating the mantra ‘ I will not be fobbed off again’ over and over again to myself 🥺

Its strange I can advocate for other people till the cows come home ( I do it for a living) but myself ... nah useless at it

1 like
Reply

I know what you mean. I took my sister the first couple of times. When you see the right person you won’t be fobbed off, they really do go into the profession to help people. No confrontation was required, just clarity on symptoms and concerns from me. Don’t get worked up it will be fine.

Jo

1 like
Reply

I know just how you feel. I was put on some medication to try rather than going direct for a late and pace. Medication has destroyed me. I have no energy can do nothing useful and have become a blob with severe sodium deficiency!

1 like
Reply

Omg that’s must be horrible for you Nanne. Hope you also get some answers

Reply

Thank you

Reply

Woohoo. The appointment couldn’t have gone better. The end result is I’m having an angiogram with a few bells and whistles to test for various things. If nothing is found on that then a perfusion scan to look for MVA. Although, he did say he doubts I have MVA because nothing indicated that on the stress echo. My faith in cardiologists is restored ( I’m very fickle like that 😊).

I don’t really want a further angio as this will be my 3rd one, but what can you do ( Rob, if you read this last one to 10 angio’s is a rotten egg 😂).

Thankyou for all for your support 👍🏻

4 likes
Reply

Thank goodness you weren't fobbed off (although I doubt you would have allowed much fobbing!!). Keep us up to speed with developments.

All the very best xxxx

1 like
Reply

Thanks Handel, no chance he was fobbing me off today. I had me folder and articles at the ready, he did ask me where I’d got all my information from lol.

1 like
Reply

This forum is great for picking up information. Our GP started Googling some of the stuff we fired at him!!! xx

1 like
Reply

I mentioned I was on a BHF forum, and he was like ‘ oh right, that makes sense’. I think some cardiologists think they’re talking to a right dumbo 🐘. But he soon upped his game then.

1 like
Reply

Nice one - well played!!! xxx

1 like
Reply

That's great news hopefully you can get some answers now. Worth the persistence.

1 like
Reply

Thanks Flowers9, yr turn to get some answers now.

Reply

Im so hapoy for u as totally understand. Yes fingers crossed. Just changed a duvet cover on my little girls bed and so breathless, and chest pain.

Reply

Group cheer, whoops of joy and sighs of relief required!

😀🙃🤗🤸‍♀️🎉

3 likes
Reply

I know... I feel I won a battle today. But the War is still up for grabs 😂

1 like
Reply

Hi, do you think it might be an idea to go private.....just for a consultation. You can ask for all your notes to be sent prior to your appointment. It’s about £150 but at least you will having a listening ear and not on conveyor belt if you get my meaning. Have done this in the past and have felt as though I was able to ask about everything that was causing me anxiety and was not rushed.

Reply

I was seriously considering it, I think I totalled it up to £220 with an ECG. In the end I complained through PALs who resolved it by arranging the appointment. I don’t think a cardiologist likes any negative feedback, which is understandable.

Reply

You may also like...