Scarey but reassuring : While out... - British Heart Fou...

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Scarey but reassuring

Themcgeevers profile image
17 Replies

While out running last April I had a mi treated with emergency angio drug coated ballon stent to clear block since then I have had ongoing problems chest discomfort fatigue etc 4 visits to a/e with cardio spasm type episodes , another angio showed all big arteries clear after a a/e trip to Papworth ( not my hospital but in area when had episode ) had a stress profusion mri which showed upper and mid basal defect my cardiologist very begrudgingly translated this to mean as small vessel disease . i asked if it was MVd he vaguely answered yes but then said nothing to worry about . I am 59 was really fit and healthy and now getting depressed as feel it’s a struggle to do anything as so much of the time I have episodes of chest discomfort and fatigue . My gp says she has no new ideas how to manage my symptoms she wrote to cardiologist as ecg at surgery showed long t waves or something to ask for advice he didn’t reply till he sent her my discharge letter . Eventually saw cardiologist last week have only met him twice and had to battle for theses appointments he greeted me jovially and said you’ll be pleased to know I’m discharging you .

He said due to my complicated blood disorder I am limited to drugs I can have so just in Isorb slow release and aspirin he said keep taking them and get on with life . He said Gp overreacting ecg fine .

I read on this site all the time about battles with consultants and it helps me not to feel so bad about my consultants lack of interest and concern . my earlier post shared my last emergency experience and I am really worried now about ever going to a/e again I feel very alone and it all feels a it hopeless like no one believes my symptoms or sees how they are impacting on my life .

I really don’t know what to do next or even if to do anything maybe I just have to accept I can’t do what I did and what will be will be I certainly wouldn’t rush to a/e again ( staff in our a:e lovely but cardiologist not so ) just try to ride it out and hope it’s not another mi . according to last cardiologist in a/e ( same team as con) very low risk of another mi .

Maybe it’s me maybe it’s all in my head and I hope the two specialist that have dismissed me and my symptoms are right but it’ certainly doesn’t feel like everything is ok .

We live in a rural area and hospitals are a long way .

Sorry after this long post my question is , is it normal to be discharged from cardiology with mva and if so what support routine checks etc would you expect from your Gp and does MvA get worse or will area of damage stay the same and symptoms episodes remain the same ,

Thank you for reading

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Themcgeevers
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17 Replies
Clerkenweller profile image
Clerkenweller

I’m 69 and fit. Had a stent in November. Real difficulties getting meds sprted but okay now. Still get mild angina attacks but increased nitrate dosage to 60mg and now only occasional problem at night. The GTN spray works. Keep pressing for a proper diagnosis of MVA and have ongoing chats about medication. It will get better.

jimmyq profile image
jimmyq

First of all, stop worrying. It never solved anything. Look at it this way: it has been caught before it became too serious. Your confidence will have taken a battering, that is why you feel nervous about things. Regarding exercise, you might be invited to go on a rehab course. If you are please do it. It will build your confidence and your fitness back up. Apart from that, do exercise but don't overdo it. Listen to your body: if you feel tired rest.

There is loads of information on the BHF website, including downloadable leaflets, etc. Get some of these and read them. Avoid Google, except for reputable websites like the NHS, BHF and similar. We are here to help you both through it.

Your consultants know more about your condition than we do so you should trust them a bit. BUT, if you have an angina attack, take your GTN spray, give it 5 minutes, if it hasn't worked use it again, if that doesn't work in 5 minutes phone an ambulance.

Milkfairy profile image
MilkfairyHeart Star in reply tojimmyq

Once when I was in hospital I asked the on call Consultant Cardiologist responsible for my care if he had much expertise in caring for patients like myself with vasospastic angina.

He said no along with you are the expert by experience in your condition and I will be guided by you and your admission plan.

I thanked him for his honesty and the staff were brilliant they listened to me and my GTN infusion was adjusted according to my pain levels.

Along with my plan I take in all the latest research articles and print outs of BHF information leaflets.

I have also been cared for by a Cardiologist who examined me without my consent, ignored my admission plan, research and BHF information leaflets and did not acknowledged my expertise by experience as a patient.

In this instance I spoke to the Head of Cardiology and received a written apology.

The best patient doctor relationship is one of equal partnership and respect between both parties.

bantam12 profile image
bantam12

I was diagnosed with MVA but given no treatment other than very low dose Bisoprolol which was then stopped as it caused extreme fatigue, I've now got 2nd degree block but Cardio Con has said no treatment despite awful symptoms.

I totally understand your frustration and worry, it's an ongoing battle for many of us.

jimmyq profile image
jimmyq in reply tobantam12

If you have blocked arteries I recommend that you watch the film "Forks Over Knives". It will show you that it is possible to clear out your arteries. It is on Netflix, YouTube and a website of the same name. It is about medical dietary research, including a massive study of 800,000 Chinese people. You might find it helpful, I did.

In the film, there is a bloke with 27 diseases. After 6 months on a WFPB diet he was down to 1.

bantam12 profile image
bantam12 in reply tojimmyq

Thanks but I don't have any blockages on angiogram, my problem right now is electrical and I wish it could be sorted.

jimmyq profile image
jimmyq in reply tobantam12

"I've now got 2nd degree block"?

bantam12 profile image
bantam12 in reply tojimmyq

1st 2nd and 3rd degree block are to do with the electrics rather than the plumbing 😉

Kristin1812 profile image
Kristin1812Heart Star

It may feel like a battle, but I’m not sure that helps. Unstable angina is hard to treat, and Drs don’t have answers for everything. After lots of trial and error, I am now on a slightly different cocktail of drugs (after 4 years) and all my angina is a lot better.

I manage the stable angina better.

By:

Starting off exercise/exertion slowly and building up. Walk a lot on the flat to get my HR up, before tackling slopes or speed.

Lower expectations on cold, humid, foggy and dry, hot days. Cover mouth.

I drink lots. Eat small in the evening.

Lost weight.

For the unstable angina. It’s a lot better, but just catches me out any time. In bed at night, sitting resting. I try and relax and not panic, I take sprays when needed. It’s more manageable, though i still get v occasional A and E visits when the spray doesn’t stop it.

Good luck, finding your own way through this.

Themcgeevers profile image
Themcgeevers

Up date

Had another mi last night blue light jobs for emergency angio to stent , guess I wasn’t imagining all symptoms I was experiencing .

Milkfairy profile image
MilkfairyHeart Star in reply toThemcgeevers

You know your body best.

Wishing you a speedy recovery.

jimmyq profile image
jimmyq in reply toThemcgeevers

Wow! Get well soon! Keep us posted.

Themcgeevers profile image
Themcgeevers

Yes apparently they missed the block last mi in April when they put one stent in and told me all others clear and that it was patch of small vessel damage causing some of my symptoms when in fact there was another blockage hidden deep In a Big vessel. This new cardiologist said he was only able to see restriction from very strange angle it was 95% closed and he feels that this was what had been causing symptoms for last 9 months . I feel so much more confidant with this man so hoping it will be good progress from now on .

DavidG1971 profile image
DavidG1971 in reply toThemcgeevers

Just read all this top to bottom. Really happy that you’ve finally got an explanation that makes sense to you.

Themcgeevers profile image
Themcgeevers

Thank you

Themcgeevers profile image
Themcgeevers

Thank you

Themcgeevers profile image
Themcgeevers

Update .

Feeling great . told this was a stemi 98 -99 closed feel so very lucky had a great team from. 999 call handler to paramedics and team who were ready and waiting for me in lab . echo shows minimal damage . Hoping to go home tomorrow if BP goes up a bit .

Best bit now have new consultant who seems to want to listen to me yayh

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