Coronation artery spasms and care plans.

[Divasong]

Going through a bit of a bad patch with chest pain and am diagnosed with CAS/vasospastic angina. Have an appt with my gp next week to discuss a care plan for those times when I end up in a&e as I usually get left for hours in a chair in a&e with just troponin levels checked and then sent home. I asked st Thomas's for a care plan when they diagnosed me, I chased them for it but no joy. I remember them telling me I would need nitrates intravenously but also wondered what other help I might need as part of a care plan. If any of you have any advice from your own experiences I would appreciate hearing about this please. I'd like to be well prepared as time will be short in the appt. Thanks.

[Milkfairy Heart Star]

Hello,

I am sorry you're going through a bad patch with your vasospastic angina.

Me too😭

I have had a careplan in place for many years.

Have you got a local Cardiologist?

Mine is an Interventional Cardiologist at a leading north London hospital.

It took me a while to find him. However over the years I have developed a good relationship with him and the other staff.

I had some awful experiences of care which meant I developed PTSD. I raised this with the hospital and my careplan was created.

It's updated every year.

It was co designed by my Cardiologist, Pain Team, Ward Nurses, Clinical Psychologist and myself.

My careplan is uploaded onto my local hospital's electronic patient records system and I carry paper copies to give to the Paramedics and A&E staff.

The Paramedics tell the staff I have a careplan. It's also flagged on my electronic patient records.

Anybody with a long term condition can ask for a careplan or Patient Passport.

My careplan guides the staff how to care for me. My coronary vasospasms and my pain are treated by an IV GTN infusion and IV morphine via a patient controlled analgesia system.

I am usually in hospital for about 10 days.

Regardless of my ECGs or troponin blood levels, I am not sent home. I am admitted to the Cardiology ward.

I do have dynamic ECGs but not always as it can be difficult to catch a coronary vasospasm in action on an ECG.

My Cardiologist also uploaded this paper onto my electronic medical notes.

I suggest you share it with your GP and ask to be referred to a Cardiologist at your local hospital who understands vasospastic angina and is able to write your careplan with you.

journals.sagepub.com/doi/10...

If necessary contact the Patient Advisory Liaison Service PALS and put your request in writing.

I was also refered to a Pain Management Programme and Cardiac Rehab.

[Holidayescape in reply to Milkfairy]

Hi, can I ask how do you get a care plan. The Cardiologists at my local hospital have no idea how to treat me. The hospital near me who has a Cardiologist passionate about this, is out with my catchment area. Thank you.

[Milkfairy Heart Star in reply to Holidayescape]

I asked my Cardiologist for a careplan. I am admitted to hospital several times a year.

What part of the UK are you?

Here in England you have the right to be able to ask to be cared for by a named Consultant or ask for a second opinion.

There is a patient survey being carried out at the moment.

healthunlocked.com/bhf/post....

[Divasong in reply to Milkfairy]

Thanks Milkfairy. Sorry to hear you are having a difficult time and hope it passes soon for you. 🤗I have no cardiologist. They signed me off once I asked for a second opinion (they wanted to send me to the refractory clinic without any testing for either cas or mvd and i insisted i wanted both of these ruled out first. Of course i got my diagnosis for cas by doing this).

I will share info with my gp like you and ask for it to be uploaded to my notes.

Thanks for all your help.

[Milkfairy Heart Star in reply to Divasong]

Thanks for your good wishes. I am unfortunately badly affected by Vasospastic angina.

My Cardiologist has seen me several times during really severe episodes of my coronary vasospasms.

He is very supportive as a result.

I email him when my symptoms are becoming unstable and he will come to see me when I am in hospital.

Perhaps ask your GP to refer you back to a Cardiologist?

Vasospastic angina is a serious heart condition. Unfortunately too few Cardiologists understand the condition

Did you see my post about the patient survey?

healthunlocked.com/bhf/post....

[Eeee13]

hi

Treponin is the primary test to see if you ve had a heart attack

I’ve been in A&E 15 times in last 14 months with just about every chest pain some really bad. My treponin levels are always between 14-16 they said if it is 50/55 or above that’s the sign of a heart attack. My case has turned out to be really complex and yes it can take a lot of time to get a plan.

If you have your hospital app on your phone as soon as the lab release the results it will be on your app it shows the results and where it is and if it’s within the safe or normal parameters. You will see exactly what the doctors see, makes it easier to understand and gives you time take it in.

Good luck

[Divasong in reply to Eeee13]

I hope you get some answers. That's a lot of a&e visits and you are obviously suffering. I understand why they do a troponin test and what the results mean but in my case the hospital don't seem to understand/ know how to deal with vasospastic angina and I need to figure out how to fix that - so a care plan is the way forward as I have that diagnosis. It's exhausting trying to self advocate when at a&e in the midst of a bad attack and without a professional who understands the condition I'm singing in the wind really.

Good luck to you.