We want to hear from you about the im... - British Heart Fou...

British Heart Foundation

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We want to hear from you about the impact of coronavirus on heart patients

Helen_BHF profile image
20 Replies

Hi everyone,

Last week the BHF launched a survey to understand how people with heart and circulatory disease have been impacted by the pandemic.

Have your appointments been postponed or cancelled? Are you receiving digital care instead?

We'd love to hear from you, take our survey here: bit.ly/3as0MBx

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Helen_BHF profile image
Helen_BHF
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20 Replies
RuthSE25 profile image
RuthSE25

I attempted to join the panel, Helen, but kept failing the password test. Can you help? Am I already on the panel? If so, I'm clearly unaware of my password, and can't seem to successfully reset it.

Helen_BHF profile image
Helen_BHF in reply toRuthSE25

Hi there, we've now replaced the survey link here bit.ly/3as0MBx

This should work, any issues do let us know :)

Mart25 profile image
Mart25

I wanted to take part in the survey but apparently I don't qualify. I had angina last year and an angiogram showed blocked coronary arteries, so I had a triple bypass in October last year. The initial diagnosis, medication, angiogram, echocardiogram, discussions with consultant, arangements for the operation and the operation itself were all done during the pandemic. Amazing! The only negatives are : there's no cardio rehab happening in my area and my follow-up appointment with my consultant surgeon has been postponed twice because he's redeployed into Covid duties. But overall, I have nothing but praise for what the NHS has done for me. I wanted to record my experiences in your survey.

MDR1 profile image
MDR1

I tried to take part and apparently I don't qualify. I had a heart attack in June 2019 and have been diagnosed with severe heart failure and had an ICD fitted in January.

080311 profile image
080311

Good morning Helen,Have taken the survey that was not a problem but it wouldn’t except my password and it wouldn’t set a new one, have not received the email with the information I need so definitely need help.

Hi, Helen.

It is 6 months since my heart attack and I have had no support from my local surgery apart from 3 monthly blood tests. Covid has stopped the rehab exercise program which I understand but I feel I have just been left to get on with it. I was already on a heathly diet, I am type 2 diabetic, and used to walk a lot.

Luckily I live in Wales and so many great walks from my doorstep. I have learnt a lot from BHF forums which has been a great help. Thank you.

MikeBB profile image
MikeBB

Yeh - seems I don't qualify - - -

Astronomyrules profile image
Astronomyrules

Hi, I have FH which has resulted in CHD and PAD, 7 stents one bypass. November 2019 I was diagnosed with need for urgent AVR which was due within 2-3 months . 13 months later, in December I finally recieved the op. I have no rehab advice, except from BHF and will have a post op telephone call from the surgeon on 22nd March. I am still waiting for further tests for an operation on my decending aorta to remove a blockage and increase the bloodflow to my legs so that I can walk more than 50 yrds without pain. Regretful that I don't qualify for your survey.

Alison_L profile image
Alison_L

I don't qualify either :(

MichaelJH profile image
MichaelJHHeart Star

Slightly puzzled as this thread popped up as a recent one. I will try to take the survey tomorrow. Things have been incredible variable with a combination of face-to-face appointments (all with appropriate PPE), telephone appointments (some should definitely have been face-to-face and others never happened) and others lost in the ether (echocardiogram and diabetic retinal check). So very variable!

Brixcos profile image
Brixcos

Obviously not most of us. I don't qualify despite having had a HA, CABG and family history of heart problems.... Disappointing, like most people I have relevant and recent experiences to share 🤔

Tyronefitsimmons profile image
Tyronefitsimmons

Hi Helen , We here in Australia have our saying ,,Staying apart, keeps us together, and up to now we are in great position , we have just about got it beat, and there are no lock downs, follow the medical advice , and think of others, its working for us, so you lot in the land of Uk try it, cheers Tyrone.

Love101cats profile image
Love101cats

It brings tears to my eyes! I accidently came across a post i sent a year ago and it was a cry for help. I had no help at all. I saw my g.p. Once this year very briefly. I had two telephone appointments with hf nurses in a year. I didn't speak at all to a cardiologist. If I had not had a chest infection with a heart rate of 150 which triggered off a blue light to hospital I doubt i would be here now. I am as I was a year ago but things are moving. Have had monitor and scan and waiting for results. I even bought a stethoscope in desperation! How can you monitor a heart without seeing the patient.? Why can't patients be judged by severity of illness rather than categories?

Terri14 profile image
Terri14

I had to give up work as was a carer and had to go into covid clients and my blood pressure and heart rate went sky high and ended up in hospital. Work didn’t think my condition warranted any special treatment, like not go into covid clients . Now worried about getting another job and blood pressure go up again

Helen_BHF profile image
Helen_BHF

Hi all, the BHF’s Heart Stories team want to hear from people whose care has been affected by the pandemic, or who have caught Covid-19.

If you'd like to share your story with us, you can find more information here: healthunlocked.com/bhf/post....

Thanks!

Hi Helen . I will gladly take part. Have saved your Post and will definitely come back to it later. 😊

Have been trying to do the Survey for a while now Helen and my Tablet just won't do it unfortunately. Keep getting re-direct and error messages. I'll try again later though via my Phone to see if I can do it through that. Maybe, it's a simple case of 'The Computer says No' ha ha!!!! 😊

SomersetJo profile image
SomersetJo

I can't access the survey, despite several attempts. But maybe it's out of date now. In case it's useful for any feedback, I was waiting for an angioplasty for over a year (also got passed back and forth a bit between two hospitals). When I eventually got to the hospital for the procedure in March this year, it was found that there was new disease and a stent that was fine in September 2019 was 70% blocked - and severely occluded. I also had surgery for PAD, and that was found to be now 90% blocked. So the delay definitely has had an impact. (And I was regarded as urgent ).

Maskt3 profile image
Maskt3

Hi to Helen or anyone else in BHF. This is a report from a recent echo and I wondered if any could say what it means in plain English? The results show that the bioprosthetic aortic valve is 4.4m/s with a max mean gradient of 78/51 mmHg. Measurements suggest prosthetic aortic valve stenosis. There is a mild to moderate valvular AR transvalvular jet directed towards the anterior mitral valve leaflet and possibly a paravalvular leak at the 12 O'clock position. The left ventrical is borderline dilated with low systolic function. Mitral annular calcification is seen with large central MR. Mildly dilated LA 5. mild TR - estimated PASP 37 -41 mmHg. I'm not familiar with this forum yet so hope I'm not in the wrong place for this question. Thankyou

Helen_BHF profile image
Helen_BHF

Hi Maskt3 no worries! This might be a question for our cardiac nurses, you can contact our heart helpline here: bhf.org.uk/informationsuppo... Hope this helps :)

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