At the beginning of March I was taken into hospital with a suspected heart attack. Four days later I was discharged with a diagnosis of unstable angina. The hospital was so busy that I never got to the cardiology ward, but was moved around to wherever there was a spare bed. So I never came into regular contact with a cardiologist and was hooked up to a series of not very reliable monitors. They kept going off, but were never right when the nurses checked them.
Since my discharge I’ve had no contact with the hospital cardiology department. I’ve had an echocardiogram and a CT scan, but the people there were purely technical. Kind and caring, but not doctors. My GP worked hard to get letters with the results of the tests - they turned up recently, but she’s had no luck in talking to anyone or getting replies from emails. She has increased my Nicorandil to 20mg a day and put my furosemide to 60 mg, but I still have no idea what is causing the angina and why it is unstable.
Now I have a telephone appointment at the end of next week, and need to make it as effective as possible. Any suggestions would be a great help. I’ve been keeping a record of my attacks, symptoms etc and plan to have a list of questions by me.
Just to make things more difficult, I was diagnosed with vasculitis ten years ago, have developed Addison’s disease, and also have occasional atrial fibrillation, so I’m anxious to know whether any of these are being taken into account, or whether they think I’m just a fussy minor heart patient who is taking time from people who are more complicated.
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BronteM
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What criteria would you use to decide whether your appointment is really effective?
One idea that might just help is BRAINS.
First, ask if it’s a medical emergency. If no, then BRAINS:
B - what are the Benefits of this treatment? Why is it suggested and necessary?
R - what are the Risks of this treatment? Now and long term (if applicable).
A - what are the Alternatives? (And as it’s not an emergency I have time to wait for you to look into it).
I - Intuition. Listen to your gut.
N - What happens if we do Nothing?
S - smile. This one is an optional extra, but the idea is to remember to enter a discussion and not a confrontation because that’s not usually helpful in achieving the aim.
The doctors have spent a long time training, sacrifice family and social life for their vocation (or profession). They are not wanting to cause trauma, or even “just” bad experiences, but there can be a mismatch between what they want to do and the actual outcome and experience for the patient. The usefulness of BRAINS is that it’s appealing to the medic’s intellect. It’s not telling them they’ve wasted their lives and know nothing. That doesn’t elicit a great response from anybody.
(with apologies to Anna Hagenaar from whom I pinched it and edited it slightly! She attributes it to midwives and doulas)
Thank you, that’s very helpful. I’ve got a list of questions, medication etc, but will add on a ‘what happens next?’ Question and check that they have my correct landline and mobile numbers. I’ve taken photos of my swollen ankles and feet, but as it’s phone rather than video that’s going to be a bit tricky!
I suggest that you see a cardiologist privately if you cannot get to see one through the NHS.
From my knowledge of what's happened to me -- long story, basically I have a blood cancer that caused a massive heart attack through a thrombosis, all undiagnosed and I was sent home from A&E when I was having the heart attack and almost died...!, this all occurred five years ago, I am now a heart failure patient, I had a CRT-P (special heart implant) inserted a year after my heart attack which saved my life, my husband and I had thankfully moved to another city with far better cardiology care -- and I had unstable angina that was also undiagnosed before I had my massive heart attack.
I suffered a lot of permanent, bad damage to my left ventricle due to all the hours missed with what happened to me.
Bottom line: I'm concerned for you from what you have described here, including your additional conditions.. So if you can afford it, I would ask your GP for a referral to see a cardiologist and go privately. I would go now.
I am not trying to alarm you, but I am trying to help you out as best as I can from what happened to me. BTW, I take lots of cardiac medication and a mild chemo daily. I am quite active, and I look fine and dandy. But I have symptoms, of course, and being a heart failure patient is difficult.
I could write more, but I don't want you to lose the thrust of this message. I rarely if ever talk about myself as I have here, but I'm doing so in the hope that it will help you.
Do not rely on your GP. Much as they can know a lot about different aspects of the heart, you need a cardiologist, I think. In fact, my GP always defers to the cardiologists. I'm also under the care of a cardiologist electrophysiologist, i.e. the specialist who inserted my heart implant.
Well, this is, of course, just my opinion. However, I and my husband have read a lot these past five years, and your description is making me advise as I have here.
Thank you. It’s something that I am considering. I’ve been looking on the internet about drug combinations and found an NHS recommendation that Nicorandil and steroids shouldn’t be taken together - exactly the combination that the locum cardiologist prescribed when I left hospital. So I rang my vasculitis consultant (at a different hospital) and have been given a face-to-face appointment at the end of next week. My preference would be that I had all my ailments looked after at one hospital, so I’m crossing my fingers that we can move towards that.
I agree it would be best to have all your ailments looked after at one hospital, but I think that can often be difficult particularly if one is sent to a specialist hospital. I go to two hospitals where I am.
If I can speak to another comment here right below about weighing oneself since I think that's great advice from 'shopman' posted right below this, I was advised to do this myself.
I am on 1500ml-2000ml fluid intake daily, which I have been doing since last October. Although I don't like doing this (of course...), it's much easier and more manageable now that I've been doing it for some months.
I was put on this after I had a very serious event happen last October, in which I got very critically ill very suddenly from what's called "flash cardiac pulmonary oedema" with my heart failing. I was in two hospitals for about two weeks afterwards recovering and going through many tests. I forgot that you initially posted this because you take Furosemide, which I also do etc.
Has anyone suggested you limit your fluid intake with a certain amount given to you, like what I mentioned that I am on?
Along with taking Furosemide, this is a means of trying to prevent a fluid imbalance in one's heart if one is prone to that.
Great that you are seeing your vasculitis consultant next week face to face, I hope things go well for you.
Better than measuring your ankles is to weigh yourself first thing in the morning and again later in the day perhaps 6/7pm - you also need to keep a diary of your fluid intake & if possible measure what you are passing. It tends to suggest if you are retaining fluid then you may need the diuretic increasing - just be aware not to overdo the potassium and if you get up to say 160mg then to have regular checks to ensure your kidneys are coping.
When you had your echo have they since told you what your EF is?
Good idea, I’ll try that. I’ve been weighing myself every morning and put on 3/3.5 kg v quickly but seem to have stabilised since GP put my furosemide up to 60mg a day. So I’ll add in evenings, and do some measuring too. This is a full time job…..
Thank you everyone, I feel I can be a lot better prepared now, and will start the appointment with a careful list of questions and measurements……and remember the BRAN acronym. Bit wary about the measuring of liquids in (and out) as the vasculitis has left my kidneys in a rather poor state and I’m constantly told that I need to drink a lot. Not easy keeping track of everything! And the last ten years have taught me that medicine is not an exact science, unlike the one that I was trained in.
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