New access to past Health records, various diagnosis (perimyocarditis, SVD) and what to do next ...

[LilySav]

I'll try to keep this as brief as possible but apologies in advance if I fail which I suspect I will

I've posted three times in the last 8 months about my partners 'heart condition'.

The new bit is that after 8 months waiting, we've been sent his health records from one of his previous Health Board ...that was a real struggle but we have them at last.

Still waiting for one more lot from 2017 to 2018 when he was in yet another healthboard and recovering from the PeriMyocarditis.

So now, the reports about the PeriMyo event from 2017 are visible, and previous A&E admissions for heart pain, breathlessness etc from quite an early age. He's only 54 but has family heart history and is very overweight.

2 yrs ago he had a single instance of unstable angina but an angiogram revealed no serious blockages and an echo showed EF of >55%. Roll on to early this year when he was quite wheezy, SVD was mentioned and Isosorbide mononitrate was added to his cocktail of heart meds. He says he feels a lot better since starting them but I still feel he's struggling.

However, what the records show in 2017, is a 'comorbidity' of HF Heart Failure (no mention of Stage) and what's concerned me most is that our GP/surgery have made no mention of annual check ups (probably because they don't have the full picture from these records), the only thing they seem focussed on is his weight.

My partner has stated VERY clearly that he doesn't want to open a can of worms again.

The after-effects of angiogram he had 2 yrs ago were incredibly painful, really awful, blinding headache, chest pain and pain throughout his body. Touching anything or being touched caused him exrutiating pain. which painkillers barely touched until they gave him morphine. They kept him in hospital overnight and by morning, he was 'back to normal'.

To this day, we have no idea what caused it but it was incredibly frightening, so I can understand why he wouldn't want to go through that again.

He's happy with where he is, how he's feeling and his slow but steady weightloss and feels that's the main cause of his laboured breathing.

So, I'm in a bit of a dilemma, torn between what he wants and concern for his health in the future/what to expect or look out for. Maybe the most sensible thing to do is give our GP the most relevant records and request an annual heart MOT.

So many things cross my mind. I'm a drama-queen, he just wants a quiet life.

Last thoughts and questions, in the opinion of you lovely folk who have experience of HF, did weighloss make a big difference for you and did Covid play a part (we both had it twice?). His Mum lives reasonably happily with HF and she's 77.

Thanks for bearing with me and any suggestions you might have.

LilySav

[Happyrosie]

I cannot answer your specific questions but I can make a couple of points.

Your husband might feel that he’s enjoying life now, even though overweight, and quality of life is better than length of life. And to a certain extent he is correct.

But.

What he risks, statistically, is either a stroke or a heart attack. Suppose he had a stroke and was left part paralysed and using a wheelchair?

So, it’s not just down to him -:his family would have to look after him so his family must have a say in this.

[LilySav in reply to Happyrosie]

I agree Happy Rosie.

He has said he's more than happy for me to chat with his GP and ask for advice/guidance and will attend appointments or whatever if the GP requests, he just doesn't want to start any more unnecessary 'prodding and poking' and I have to respect that.

He's not a stubborn as I might have made out and I am a bit of a excessive worrier!

[Lowerfield_no_more]

Your husband sounds like he is open to non medical interventions to help his situation. You have told us he is very overweight and I am sure you are aware, just as he is, that body weight management is one of the critical issues related to heart health risk. And purely on a noticeable level carrying around unnecessary excess weight tends to drag you down, and if you have HF I would imagine that is even more noticeable. So I suggest you sit down with your husband and talk to him about losing some weight, without making it a challenging divisive issue for both of you and which you can both sign up to, assuming you have not done so already. There are many ways of doing it, but the simplest way as I found out is to simply cut out sugary stuff and 'snacks', and reduce portion size, without making the daily diet uninteresting. Subtle changes to the daily diet can make a significant difference to body weight, and as the kg start to roll off you really do notice the difference, as I found out. And of course if regular daily exercise is possible, even at a basic level like walking, that helps weight loss too.

[Mancunian1]

hi. I also asked for access to my health records which took months to complete but now shows me 20 years of records. Most of it is in isolation but you can in my case aggregate things on the nhs app and see patterns. Had I seen a pattern of my cholesterol rising over the years like I can see now I’d be much more attentive and looking at ways to reduce it. Not wishing to blame my GPs in any way for this as it’s my health and my responsibility but when everything is measured as snapshot and the usual response is a watchful wait as it’s referred to in the NHS the cumulative effect can be pretty impactful over time. I’ve now got a 99% blocked LAD and go in for CABG surgery on Tuesday.

I know I’m one of the lucky ones having it picked up by a wonderful team of clinicians in time and knowing what could have happened if it hadn’t. Going forward I can and am making positive steps with more proactive maintenance and monitoring of my health in the future.

[LilySav in reply to Mancunian1]

Good point about the accumulative effects over a long period. Life, work and responsibilities get in the way of self-care ( this is the case for my partner who simply didn't have time to look after his health in his 'former life') ... and sadly, NHS care is so often medication based and too late, rather than holistic and preventative. Yes, I agree we should keep an eye onthe ball ourselves but we all know how difficult it is to get a sensible conversation with our GP ...so much quicker for them to scribble a prescription and get us out of the door.

[fishonabike]

a quick response to one of your questions: weightloss is a good idea - the more there is of a person the harder their heart has to work to keep every part of it supplied with oxygen and fuel, so losing weight means a decreased workload for the heart and lungs

if you think of the body as a factory which needs raw ingredients for the product and maintenance supplies to keep the factory working smoothly - bigger factories need more supplies so their transport department has to work harder to keep deliveries coming in - if it can't increase the number of trucks each one has to carry more go faster and do more trips - reduce the factory size and the trucks might get the occasional holiday🙂

[Qualipop]

YOu say he is steadily and slowly losing weight so well done. I lost 2 stone after my heart attack and I wasn't even trying. In fact I didn't even know until summer came and I got out my skirts and they all fell off.. I hadn't dieted but I had changed what we eat. I totally cut out cakes, biscuits, anything fried; things like crisps . We have never eaten ready meals and I always cooked from scratch but my husband was brought up on cheap "filling" food like corned beef hash, pies, fry ups etc. That all stopped and I cut right down on red meat using chicken and fish instead. ( I HATE fish LOL). If I snacked in the evening I had a few nuts instead of cri sps. The weight just poured off. I hadn't even needed to lose any. We don't dri nk so that wasn't a problem. It was just a matter of changing what we ate and how it was cooked.