Mike Gosden - Dilated Cardiomyopathy

[PorridgeForMe]

Hello,

I am posting this as an introduction to myself. I live in southern UK and am now 77 - going on 78.

I was diagnosed with Dilated Cardiomyopathy (DCM for short) back in June 2012 - I was in a bad way at the time and, given what I have learned about the condition since then I am fairly sure that if I had started on the drugs that were prescribed at the time I would not be here now - in 2024.

Like most people diagnosed with a serious heart condition it took me quite some time to understand what was going on. I learnt that there are two sorts of patients,,, The first group is not that interested in the details - they just want their medical advisors to make all the decisions and make any recovery that they might think possible happen as swiftly as possible.

I am in the other group - I want to understand everything that is going on. Why does one blood pressure drug reduce the severity of DCM symptoms whilst another one does very little to help - for example.

But I soon realised that if I wanted to understand everything - well I would have to take myself off to medical school for 5 years and then work myself up to consultant level over the next 10.

But my efforts have paid off - I think I do now understand quite a lot about DCM - and the main thing I have learned is that even the worlds leading academic and research cardiologists are very ready to admit that their knowledge is limited.

Often they only have a limited understanding of why one drug works and another one does not.

I have been involved in research - if you go to bhf.org.uk/what-we-do/news-... and scroll down until you find Mike's story - the Mike is me.

So let me try and explain one thing. Like a lot of us, at first, find it difficult to understand why a large heart is seen as a bad thing - surely, if the heart is just a muscle, then a large heart should be a good thing. In general large muscles are stronger than small ones.

The trouble is that heart muscle works in a very different way to almost all the other muscles in the body.

The heart does its work by getting small - during Systole the left ventricle pumps blood out into the aorta by getting small. If the heart has become larger than normal this particular pumping action would not be able to happen properly.

So this first post I am making might give you an idea of why have signed up for Health Unlocked. I want to be able to engage with others to help all of us understand how the cardiovascular system works.

I will be interested to see what others think.

[BeKind28-]

Hello

It sounds like you have really educated yourself and for you that has really helped and you also sound like my Dad was he was in your group as you call it and always liked to know everything which helped him so much

Myself I am in the other group to much information does not always help me but we are all different

I am sure your input for those that want to know will be very helpful

I hope you are having a really nice Christmas x

[Popepaul]

I would self identify as being in the second group which you have described. I look forward to any future posts which you might make. You clearly have an enquiring mind.

[Robfromwales]

I am in the ‘second’ group. Keep it coming. For me my extensive reading on my then thoracic aortic Aneurysm led me to conclude that ‘ threshold’ or not - I was at risk of dissecting or worse given my reading of research and guidelines and especially American ( presumably high volume stats) AHA ( think that’s the abbreviation) .

[Robfromwales in reply to Robfromwales]

Sorry pressed send too soon. So I advocated for intervention and had the TAA repaired

[fishonabike in reply to Robfromwales]

You can edit your own post and comments by using the "More" option at the bottom of the post/comment, select edit then change or add content, remember to select "Edit Response" when finished

[Robfromwales in reply to fishonabike]

Thanks

[Sharpglo]

oh wow Mike, I am classified under your heading of wanting to know all I can. (also DCM) no reason for it. I have watched many youtube videos plus googled heaps. I have a reasonable understanding of what is going on. One of my main problems is a pain just below my right-hand ribs, comes, in aftermsay 1.5 hrs work say, in kitchen etc, radiates down right side, around lumbar around back of ribcage up right rib at rear. The longer I stand the worse it gets until I lay down and it subsides. I had it for 18 months until I went into HF fast beating heart. It could not be diagnosed by doctors. In hospital a dr told me it was likely fluid in the sheaths beneath the lung and liver. Nine of the meds have helped it. Also get breathless dizzy nauseous when bad and virtually bed ridden. Wonder if you have any ideas? It was Nov 2023 it came to a head. I received a biventeicular pacemaker in Aug. Told it is doing an excellent job but I noticed that very little advantage. Went from 10%EF to 25% on drugs. In Feb due to see cardiologist who only seen twice in over a year and have another echocardiogram. I would likely have done something similar to you if I was younger, 72 now. I've thought how I could do something to improve diagnosis in the GP surgery, say handheld echoes I have seen - educate people to have echoes or calcium test at say 40 yes. Stress tests etc. Thanks for being prepared to join and educate. Happy 2025 to you, yours and everyone tuned in. Xx

[Showgem]

I am pleased that your health is good enough to be able to cycle. I have other problems which prevent me being able to cycle and after cycling all my life I miss being able to go out for a ride.

Did you mean that you did not take your prescribed medication? I read your experience and wondered if you meant to type that?

[Silvasava]

I'm definitely in the second group. Diagnosed with Afib and DCM after a stroke in December 2019. I'm on the 4 pillars and a few others, I need to know what does what a why! I always have my list whenever seeing a healthcare professional and I research which is how I joined Health Unlocked. Some new challenges this year after major surgery and currently on chemo but I'm still here, going on 79 with another great grandchild due in February.

[honeybubs]

Hi PorridgeForMe, great stuff I always need to know everything I will read all about you later. I have Dilated cardiomyopathy- will comment when I’ve read it. I’m looking after my 95 year old mum at the moment. Thank you for helping everyone. Joy

[jgd15]

Group 2 for me. During the usual tests leading up to 3 stents it seemed a good idea to list relevant medical abbreviations for heart and my other conditions .. about 150 lines now but does aid insight, especially of doc's letters and HU posts!

[Mitchum]

That's great. I think everyone should have a basic (more in your case) understanding of their health problems. We owe it to our physicians who treat us, our families and ourselves! Personally I have concentrated mainly on Warfarin use and the myths surrounding it. If I need to take it, which I do, I want to know everything that I can and should. After all, it's my life!

[honeybubs]

Hi PorridgeForMe, I’ve read your article it’s very good and glad you had positive results from taking part. I too had problems spanning over 15 years and I kept getting sent to other departments specialists and they said I was fine! It turned out I was right all along and it was my heart. I was getting syncope’s so I went privately and begged to have an echocardiogram as the cardiologist read my previous doctors notes and was telling me again that I was ok. With it being private he did say yes I could have an echocardiogram. When I went for the results he told me it was heart failure dilated cardiomyopathy with an ejection fraction of EF35. Tablets started but I was getting worse and had Myopericarditis and in hospital for a week wired up and they found I had Bigeminy arrhythmia and was getting an extra 34,000 ectopic beats! I was 63 when I had this diagnosis I’m now 65.1/2 and had to have a CRT-D (Cardiac Resynchronisation Therapy Defibrillator) and my ejection fraction went up from EF35 to EF45 which was wonderful. I’m due another Echo in the next few weeks to see if it’s improved more then he will discuss whether to try and reduce or stop some of my tablets. I was taking no tablets at all in the past except for an odd painkiller right up to the end of 2022 as I’ve never liked tablets because of side effects. I get very low BP and the tablets make it worse so stopping some of the tablets would help me with that under supervision with the doctors of course. I look up everything all the time to educate myself. I know family and friends who take everything they are told as gospel but if I had done that I wouldn’t be here alive and kicking now. You have to take control of your own life to survive. Thank you for sharing your experiences. Joy x

[Bluecauli]

I feel exactly the same way . I want to know exactly what is happening as it makes it easier to understand .

I have been a nurse for over 40 years and like to know how things work down to the smallest detail so I can I understand all the symptoms I experience. I work with my patients in this way and after 15 years in ITU .

My patients prefer it !!!

I was disheartened during my journey as I felt I knew more than the staff looking after me .

I find your approach very impressing .

Thank you

[destiny234]

Is Dilated Cardiomyopathy the same as` normal LV with severe dilation`?

[Porridge65]

Hi there Mike, your comments really interested me, I'm in your category of wanting to know and understand more. We owe it to ourselves and our Cardiologist Drs because we're all different. The more knowledge Drs experience from each individual, the more they understand and can treat patients.I've been suffering for a long time now with chest pain, back pain and severe breathlessness on the slightest exertion.

Had Echocardiogram November, was told I had an Aortic Aneurysm. However! 2 weeks later had an ECG told I have I have HOCM. Appointment with Cardiology Dr January 2nd. Another MRI Scan booked for the 24th January. Whatever condition I have, it is heart related and I can't believe how much it's affecting me on a daily basis. Sleeping so much. No energy. Palpitations. I use a GT spray which does help. When I get the palpitations if I stare at the wall or floor I can actually see and feel my heart beat in my eyes, it's scary. Or into the mattress if I'm in bed. It's rendered me useless for months and it seems now I'm only just getting some answers, or will be on keeping appointments. I have made a note of bhf.org and will be reading your story. I found your write up very impressive so keep any future information coming. Look forward to reading your Mike story and here's wishing you a very happy healthy 2025. I'm Porridge65 and swear by my porridge in the morning. 👍☺️