Would you be interested in more virtu... - British Heart Fou...

British Heart Foundation
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Would you be interested in more virtual events on the community? If so, what kind?

Helen_BHFHelen_BHFAdministrator183 Voters

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49 Replies
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Recipe tips good help you tube channels

woodbon
woodbon in reply to L5621

How heart failure - how to give correct info to a doctor treating for another illness. I had surgery and found explaining my heart condition.

Cradds1202
Cradds1202 in reply to woodbon

I Have several medical conditions i have gathered up over the years including three major joint replacements 2003/2007/2011. yes quite a bag of spare parts must be onto the second volume of hospital medical notes So I have a plastic wallet in my get ready for hospital case with a copy of each discharge letter .Boy do they think I am mentaly with it,At 81yrs well had lots of practice and can usually beat clock they not all,looking at the time allowed .I have invited to give a copy but there is some reason why this is not acceptable.how ever GET SMART. keep up to date.best of luck

It would much appreciated if there were more questions and answers on heart failure. Thank you

It would be good to have live talks on both the common heart conditions but also the rarer conditions that affect the heart but may not be solely Cardiac .

I have Dysautonomia and Sinus Node Reentrant Tachycardia and POTs , there isn't really any information about these conditions but they do affect my Cardiac Function and I have to take Heart Medication.

Perhaps rather than a non specific social chat it could be chats on a topic involved in Cardiac and Chronic Lifestyle needs. Diet , Exercise , Travel , Work , Rights , Pacing every day life tips shared between us. That would also make it easy to save the posts that are most useful .

Healthy cooking. Question and answer or discussion meetings

More about cardiac arrhythmias and how to deal with them and the anxiety they bring. Plus any regular input from a cardiologist for example a talk on current and planned research and latest thinking.

Jeans1234
Jeans1234 in reply to meadfoot

Agree

Kristin1812
Kristin1812Heart Star

Yes. Face to face BHF counselling, individual and/or group.

Occasional invited lectures by local scientists/Cardiologists or specialist nurses.....on new research and developing approaches.

Imin
Imin in reply to Kristin1812

This would be great! x

A couple of cardiologists (Dr Sanjay Gupta of York and Medlife Crisis of London) post excellent informative videos on YouTube/Facebook. Something along those lines. It might be duplication though and I recognise that.

Psychological support for cardiac patients.

Would love to have info on my condition AVS and how to manage it as there is never enough time as annual reviews to ask questions.

What we see in Forum, on a regular basis, is the need for emotional support for patients and their carers. It’s great that our doctors and surgeons can complete their work and send us out into the community saying ‘job done’ but there is a huge amount of fear associated with heart conditions and OHS recovery and this is ongoing. Everyone asks ‘how did you cope?’ and I feel some kind of event that addresses these issues could be useful. There is of course some room for humour here and that could be beneficial also.

More on medication sensitivity and arrhythmia.

Jeans1234
Jeans1234 in reply to Cromwel

Agree

I think that would be very helpful for trying to cope with any related matters.

Its a good forum. People hv to become good friend with each other. Every patient need encouragement to live healthy and fight with disease.

Hi Helen.

Webinars with questions submitted in advance would be good.

Thanks.

I would be interested in fitness issues for those who were very fit to start with e.g. distance running pre-heart attack and how to get back to it.

Emotional, psychological support. Healthy eating and what exactly is ‘everything in moderation’? Local gatherings would be great to actually meet people and talk!! Even from 2 m away would be good right now! Or even annual meetings for people further afield! I can’t thank people enough for their support and encouragement on this site xx

Prada47
Prada47 in reply to Imin

Possible questions and answers with a Cardiac Specialist Pharmacist I have only ever met one and he was so clued up on Heart Failure a speciality of his !

Regards Prada

Keep up the great work. Phil

These are all good suggestions.

I'd love to join a walking group, not a fund raising event but something weekly with like-minded people to join in when they are able

Prada47
Prada47 in reply to shirljo

Poole Heart Support Group have a weekly walking session .

Regards

Imin
Imin in reply to shirljo

I’d join one anywhere near Middlesbrough - believe it or not we have some beautiful walks in and around Middlesbrough. A group specifically for those with heart disease would be fab...walk, chat, support, laugh all rolled into one! x

Hi Shirljo, In the UK there are many 'Walking for Health' groups running different levels of walks - find your local group at walkingforhealth.org.uk/wal...

Walking, yoga and healthy eating have given me an extra 5 years of life so far ... many more years to come. Happy walking xx

Kristin1812
Kristin1812Heart Star in reply to shirljo

That’s a great idea......I have tried to fit in, but feel I hold them back....a hearty group that all slow up together, to go up slopes, would be great!

Greenfarm
Greenfarm in reply to shirljo

Why not join your local Ramblers Group. I find it really beneficial both socially and health wise. My local group offers walks of different lengths almost every day of the week. I’ve made such lovely friends too. I have AF and three leaky heart valves. I am 77 and I really do benefit from both the exercise and the company.

It would be nice to have a few more short courses on here. The A/F one was good.

Greenfarm
Greenfarm in reply to izzyg43

I must have missed that. Maybe repeats of popular courses too.

Helen , my one reason for this reply is to discover from other Hearties why we all appear to be on different strengths of the same drugs.

Isle of Man needs more support as patients go to Broadgreen in Liverpool.

Recipe exchange would be good. Also news about latest research into heart conditions.

Helen_BHF
Helen_BHFAdministrator in reply to dunestar

Hi there, you might be interested in signing up for our research newsletter for the latest news on the research the BHF is currently funding bhf.org.uk/what-we-do/our-r...

@ dunestar Outandabout GolfyGirls3

Yes, this would be excellent and perhaps some questions could be written and given in advance so new research can be addressed. I think it might be a bit better for the nurse to be well prepared.

Up to date research on medication for high blood pressure

Perhaps more on living with angina. Identifying triggers and how to minimise their occurrence.

Meeting and chatting with others, knowing we do have a heart issue in the background, but not necessarily need to discuss it. I would also be willing to be a telephone buddy with someone.

I’m a retired nurse, worked with nhs till I was 80! Do have some mobility problems, but still drive. Widowed, live on my own, and have found this lockdown hard, missing socialising. But have many interests, and supportive family.

Marigold

I would love something like google meets we could opt in to with specialists such as counsellors, cardiac nurses, pharmacists or nutritionists:

I’m so confused with all these healthy eating plans!! Quite a lot of conflicting information. I love cheese but stopped eating it for quite some months! I now eat 50% less fat cheese and 0% fat/sugar Greek yoghurt and on the odd occasion I make a beef chilli or bolognese I use 5% fat lean mince. I might look into paying for a nutritionalist/dietician to really go through the healthiest diet for us hearties! Mediterranean, no carbs, no fat, no sugar, plant based, insulin resistant, diabetic friendly...it’s mind boggling!! And what the heck does everything in moderation actually mean?? Some chocolatey treat each Easter, maybe at Christmas, once a week? When the need of a salty, meaty crispy snack rears it’s ugly head, do you give in once a week, once a month, at Christmas time? You have a day trip out to the beach with the family once in a blue moon - can you give in to a small portion of fish & chips or a 99 ice cream? Can you indulge in party food and birthday cake every time their is a family member or friend’s birthday (I have six siblings, each with spouses, 12 nieces and nephews, plenty of friends, all of whom make the most of their birthdays and barely a month goes by without a family or friends gathering - in non-COVID times!) Or do you deny yourself in the knowledge that you are doing the best for your health?? I have never drank alcohol and non of my family or friends question it but when I have declined the party nibbles and birthday cake it has led to questions and concern and a touch of awkwardness and embarrassment!! xx

My experience of cardiologists is that they give patents very little information about their conditions or what to do after leaving hospital. I only found out why I needed a pacemaker by reading my discharge papers and then learning about it on the internet and in forums like this one. The BHF nurses do a great job, but it would be very useful to be able to talk to cardiologist or cardiac physiologist as well, especially at the moment when appointments are difficult to get.

Sadly I have to agree, even my GP couldn't make sense of what my cardiologist had written re my condition and future steps. Neither the hospital nor my GP would give me a copy of the note, fortunately I was able to photo it using my mobile phone whilst on my own. Eventually, via a cardiac related Facebook page, a 3rd year medical student (in USA) decoded the info. The big turning point for me was taking a proactive attitude to my situtation which was greatly help by discovering the BHF website and talking to the BHF nurses.

Would love heart based medical break throughs to be posted here, in plain english. And latest more specific knowledge on effects of diet and heart problems, eg lack of / too much of vitamins and minerals, more than general reduction in fat, sugars etc to empower people to treat the cause not just the symptoms.

I found out a lot from the 3 podcast about women and heart attack experience. I feel very alone as there is no BHF groups or chest stroke and heart scotland groups where I am. Also I would like to hear more about the differences we experience.

Like to hear information about talks, lectures, public participation/consultation, tv & radio progs etc related to cardiac issues.

help to decide if / when it would be safe to go near other people again. So many people are milling around together, no social distancing. I have angina, ischaemia, high b p, Cardiomyopathy, 2 leaking valves & a lung disease... Bronchiectasis. So I think I should remain apart from other people till after a vaccination. I'm not brave (or foolish?) enough to go on a bus & cancelled 3 holidays.

Managing heart failure with Pulmonary hypertension and AF

Particularly exercise as I have spinal stenosis and arthritis so multi issues

I apologise for asking such a complex question but I do have all these conditions and some times find it very hard and I want to remain as fit as I can

Had a Thoracic Ascending Aortic Aneurysm and was diagnosed in 2017 and had it repaired via Open Heart Surgery last year. But prior to that I found there is very little information out there regarding the condition. It wasn't even on the NHS Website. A bit more information on the condition ,medication and pre and post op issues would be extremely helpful to myself and many others. Excellent site nonetheless.