Nervous newbie: Hi everyone firstly I’d... - British Heart Fou...

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Nervous newbie

Yellabelly
Yellabelly

Hi everyone firstly I’d like to apologize for this being the first time I’ve written in although I’ve been reading lots of your posts for two or three months . It’s amazed me how many different lots of heart problems we have between us. I’m 53 and due an angiogram in two weeks after being told I’ve got dilated cardiomyopathy, eschemic heart disease, and a leaky mitral valve. The positive comments I’ve read on here and the fact that things could be worse( I’m still fairly stable and mobile) have kept me going on the dark days. I’ve certainly learnt patience and to put my trust in the professionals and apart from the length of time it’s taking I’ve got no complaints, and that’s only because of their workload! Anyway I’m trying to go with the flow and not get too anxious, but it’s the results and next stage , the fear of the unknown that’s keeps niggling away at me, but knowing I’m just one of many and that I can post any queries/worries is comforting.

I’ll let you know how I get on, and I also have an travel insurance claim( for flights only) that were booked after breathing problems but before heart diagnosis, so could be interesting. I’m not holding my breath, no pun intended. On that note I’ll wish you all the best and say bye for now and thank you all for the posts I’ve read

9 Replies
oldestnewest

Hi Yella

Thanks for posting your story - there are similarities to mine.

Since you’ve been ‘lurking’ for several months reading the messages here I hope any fear and anxiety has largely subsided. There are, indeed, many different cardiac issues discussed here. I was diagnosed with Heart Failure and Dilated Cardiomyopathy last year. I tried for a long time to find an appropriate local support group but couldn’t find one. Thankfully,I eventually found these forums.

I imagine that you are now letting the NHS go through their processes in an attempt to identify a root cause. I assume that you are on medications, have had blood tests, ECGs and possibly an echocardiogram. An angiogram is different in that it is ‘invasive’, requiring a cannula in your wrist. It’s a very minor procedure, though, and nothing to worry about. As you should have been told, it is to check blood flow through your heart veins and arteries to make sure there are no blockages. The next step will depend on what they find / don’t find. It’s a long process but, as you say, best not dwell on it. Fear of the unknown is understandable but cardiology has made great advances in recent decades and I suspect that you’re in a good place mentally to cope.

Good luck with your insurance claim and don’t hesitate to come back with any concerns and queries.

Yellabelly
Yellabelly
in reply to IanMK

Hi Ian

Thanks for your reply. Yes I’ve had blood tests, echocardiogram and two nuclear perfusion scans, but the Angiogram should hopefully reveal what the problem(s) are and if they can be sorted 🤞.

I’m on quite a lot of meds but not feeling too bad fortunately.

I have also been comforted by some of the posts and have been hungry for knowledge and answers, which I now know I’ll just have to wait as everyone is different etc . Did you have stents fitted? I have been told I’ll be on the Bisoprolol ,ramipril ,spironolactone , clopidogrel, statins, isosorbide monotrate, for life whatever but it’s better than the alternative.

Thanks again for your reply

IanMK
IanMK
in reply to Yellabelly

Perhaps this is where our stories diverge.

My angiogram showed everything as normal. The next step was a cardiac MRI. I was then expected to wait 5 weeks for a consultation to get the results. Since I was on sick leave - I felt that work stress was exacerbating my symptoms (and most likely initiated my condition in the first place) - I took the option to take the Private route since I had insurance in place. I’m very grateful for a GP in my practice for doing his homework and referring me to a cardiologist in London (the GP has a personal interest in cardiac issues so Is particularly knowledgeable). The cardiologist concluded that my cardiomyopathy did not have a physiological cause but was a result of complex arrhythmia. He referred me to a colleague - an Electrophysiologist (a specialist in the electrical function of the heart) - and I am receiving treatment for my arrhythmia. The hope is that my dilated cardiomyopathy will resolve itself if my ventricular rhythm can be corrected.

I was told three months ago I couldn’t have a cardiac mri as I’ve a plate in my leg, and since then I’ve had conflicting reports. I was initially told I’d be having an Angiogram and any blockages fixed and now that’s not the case unless it’s an emergency. Reversible defect in inferior wall and apex has been mentioned twice but I’m a bit baffled as why they’ve back tracked on fixing the problems while they’re in there, but I suppose they have their reasons and won’t speculate until they have hard facts. It’s interesting what you mentioned about stress being a factor because I feel that’s definitely the case with myself. My symptoms first appeared last October after caring for my mum for 18 months . I think her (losing) battle with cancer, trying to juggle my work around her treatment ( I’m self employed) compounded whatever underlying problems where there. I was really breathless but wanting to return to work after the funeral, after Christmas. That was not to be as my breathing so bad by the time I’d got washed and dressed and down the stairs I was absolutely exhausted and completely out of breath. I’d got it in my head it was to do with the chemicals and isocyonate paint I’ve used for 30 years but like you I was told I might never know the cause. I’m just relieved that they’ve got a plan because for a long while I felt I was in the wilderness. Luckily my wife and children (and partners) have been fantastic so I have to be strong for them. Please keep me posted Ian and all the best for your treatment

IanMK
IanMK
in reply to Yellabelly

Being self-employed will make it even more difficult for you. At least it sounds as though you haven't got a young family depending on you. You will feel pressure to get back to working but you will need to put yourself first for a while and take it easy. This will be hard. Stick with the plan. Come back here if you're finding the going tough.

Best wishes & good luck.

MichaelJH
MichaelJHHeart Star

Over time I have had both MRI and CT scans. My femur was plated after an accident ten years ago. When I queried the metal plate re the MRI they said they were unconcerned as with all the screws there was no chance of it moving under the magnetic field generated by an MRI scanner and TBH I felt nothing untoward.

My angiogram showed an 85% blocked LAD and three other arteries around 70%. Further tests showed stenting was not an option and I had a bypass in June. The next move depends on your angiogram results.

Hi Michael thanks I’ll wait and see what the angio shows but I must admit I thought they should of been able to do one

Good morning Yellabelly, There are loads of "nervous newbies" I remember having my first angiogram and being told to "go home, rest and do as little as possible and wait" it is quite a strange experience.

Take strength from the numbers on here who have experienced what you are going through. Waiting for whatever procedure, our much attacked NHS is brilliant at this stuff. What can seem like a very daunting experience as it is affecting your heart is to the doctors, specialist nurses, cath lab staff etc. Just another routine job. They are brilliant and what can be done and how good you can feel afterwards is amazing. Keep your spirits up.

Yellabelly
Yellabelly
in reply to MK1954

Thanks MK for your kind words and yes it’s true that I certainly have gained strength and a certain amount of courage from the many posts I’ve read. Fortunately I have a lot of faith in the nhs and totally agree with you on that especially given their funding and work load ,they are truly amazing. I broke my ankle quite badly in Bulgaria 20 years ago and after 3 days in under their health care it would take a complete catastrophe for me to criticise ours. Unfortunately a lot of people only look at the negatives and just like to moan. They want to try balancing over a filthy toilet with no seat or door, whilst using crutches! The old padded wooden ones that go under your armpit. I was very happy when they flew me home and wheeled into our local a & e .

Anyway there are loads of positive stories on here so thanks to you all and keep up the good work everyone

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