update to original post regarding hea... - British Heart Fou...

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update to original post regarding heart failure and private consultations with cardiologist.

Wallewoos profile image
17 Replies

Update two weeks after being told I had heart failure by my GP following a routine echocardiogram.

Appointment this morning with private cardiologist went well but unfortunately the last echocardiogram I had 1-2 months ago was correct.

I arrived at the the appointment with a copy of my most recent echocardiogram and ECG from Monday (3 days ago) and blood results. Both my ECG and blood showed normal !!!

During my appointment the cardiologist was surprised with how I presented, with no symptoms (eg shortness of breath, fatigue or palpitations) my BP was higher than normal at 140/70  and pulse was 65 he stated it was probably the anxiety of the consultation.

He also listen to my chest and checked for oedema on legs and stomach which was all clear. He also did information gathering with regards to family history of heart conditions.

The cardiologist stated he felt we caught it at the start of a serious declined.Given my echocardiogram results of EF-35 the cardiologist initially question the most recent scans accuracy as I presented fit and health.

This was short lived until he manage to get my last 3 echocardiograms (done in 2014 and 2017) up on screen. All previous echocardiogram went well and  I was always told I was all fine no problems!Once previous scans were next to each other it was easy to see the decline.

2014-that showed 67 ejections factor (EF)

2018 that’s showed EF as 52

2023 showed  EF-35

Once he could see the deteriorating he stated  there was no doubt. 

I was give a prescription for two meds dapagliflon 10mg one per day 

Bisoprolol 1.25 one per day

this will slowly be increased to 10 mg over time.He explained I will go on two other meds at a later date as well. 

Future treatment was discussed and will probably need a ICD at some point .He has referred me to heart clinic for general care and to a heart specialists who works for the NHS as well as genetic testing for familiarly links, and finally and MRI ‘urgent ‘.

All referrals where done as urgent and on the NHS so at no monitory cost to me.

To be honest I was initially worried about going private for this consultation as we are currently a one wage household and money is tight.

However I can honestly say it was the best experience I have had with a medical professional and well worth the £200 cost.

On the NHS I was informed it was a 72 week wait and that was scary.

Where as booking a private appointment I was seen with two weeks, given a prescription for meds and referrals to specialist and services were done there and then.

If I was to continued to waif I would probably be at this point but two years time from now.Worth it!!!! 

Link to original post bellow

healthunlocked.com/bhf/post...

this is an update for all those interested.

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Wallewoos profile image
Wallewoos
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17 Replies
Tos92 profile image
Tos92

So glad you decided to go private and make that appointment. Definitely sounds like it was worth your while and you’ve come back prepared and armed with more information. Let’s hope that by starting the meds sooner rather than later, your EF will begin to improve.

Let us know how you get on.

Tos

Wallewoos profile image
Wallewoos

Familial dilated cardiomyopathy due to the family link and not having any other factors. This is why I have been referred to genetics.

BeKind28- profile image
BeKind28-

Hello :-)

I remember your original post and the 72 week wait and I am glad you decided to go private that £200 was money well spent

Let us know how you get on :-) x

uzininemm profile image
uzininemm

It certainly is interesting Blossomsinspring, my cardiologist has referred me for it to as he still doesn't know why I got HF.

Yumz199725 profile image
Yumz199725

Thanks for update so glad you was seen and not having to wait. I can definitely see there's been a major decline in EF wow glad they caught it when they did. Glad your on some medication for it aswell is that to improve the EF?? Brilliant about the urgent referrals aswell. Hope all your appointments go well and take care! X

Swalecliffe88 profile image
Swalecliffe88

Hi Wallewoos. I had HA and by pass surgery 9 years ago and Cardiac Arrest with Defib implanted Sept 22. Yet discharged following implant surgery with no cardiac re-referral or cardiac after care. Like you tried to get consultant and gave up when the booked telephone appoint never happened. So went private. I paid to see consultant I had 9 years ago and he did the same, added me to his nhs list. But I got some answers I wanted and meds sorted out. I am on state pension so private cost was tight for me but well worth it. Would do it again if I needed to.

Yumz199725 profile image
Yumz199725

The genetic testing is interesting yeah. I developed congenital heart disease some how I know I got heart disease from my grandad but I don't know what the exact name of the heart defect he had he passed bout 8 years now 💔. My 3 brothers have a slight heart murmur and a hole in the heart but they don't get any checkups and also my cousins son has heart disease aswell so alot of it in my family my mind always goes blank when they ask bout family history.

Yumz199725 profile image
Yumz199725

No they have never refered me for it they probably would if I could remember my family history properly 😳🤣😆

Yumz199725 profile image
Yumz199725

I definitely will next time I see them in January x yeah I never realised how much heart disease was in my family until just saying it that comment woah!

Yumz199725 profile image
Yumz199725

Thanks hun. Oh i meant to say two of my brothers not 3. x

uzininemm profile image
uzininemm

Possibly and no. In regards to my family history not the previous generation, but I have since found out from y last remaining aunt on my mothers side that my gran (her mum) had heart problems and she died in her early 60's (I was only about 4 at the time) in 1971 so I don't actually know what it was.

I am rather intrigued about what he will find.

MountainGoat52 profile image
MountainGoat52

Hi Wallewoos,

So many times over many years I've heard stories of how going private has cut through the waiting list, all to the good for those that have been able to afford it. You were absolutely right to seek advice privately now. What would your EF have been had you waited the 72 weeks.... with possible cancellations / postponements added?

It's great to hear that you are now on medication to start to reverse the downward trend and get you back towards where you should be. You are still young with a lot of life to live, so I do hope that you feel an improvement soon. Keep positive... the only way from here is up.

With my very best wishes,

Gerald

wilsond profile image
wilsond

I'm wondering why they are giving you a hefty dose of bisoprolol, a rate control drug in the beta blocker family.Do you experience high heart rate?

You made the right choice to go private initially I did the same for AF and Flutter.

Lezzers profile image
Lezzers in reply to wilsond

Hi wilsond, A beta blocker is one of the 4 pillars of meds prescribed for HF as this treatment is proven to be the more effective in reducing hospitalisation & increasing life expectancy. But 1.25 isnt a hefty dose, it's the lowest dose available. Hopefully this link will be able to explain better.

pumpingmarvellous.org/heart...

Wallewoos profile image
Wallewoos in reply to wilsond

hello Wilsond

I am on the lowest dose of Bisoprolol 1.25mg once a day . And

dapagliflon 10mg one per day 

How ever my Bisoprolol will slowly be increased to 10 mg over time.

This is the standard dose as per NHS and BNF guidelines for anyone with heart failure.

But thank you for you comments

wilsond profile image
wilsond in reply to Wallewoos

Hi! I see. I'm on 1.25 biso but for AF.Didn't realise the dose is so high fir HF.

Best wishes going forward xx

Qualipop profile image
Qualipop

I'm so pleased the appointment went so well and you got answers. Family history should always be considered. My grandfather was the youngest of 13 children and the only one to live past 50. All of his siblings died of what was called back then, dropsy. My GP was simply not interested in my family history. The ONLY person who ever asked was a young doctor in the Urgent care centre where I went via 111 for bad breathlessness. He referred me for an urgent stress test but I had a heart attack before that appointment. Only then did my GP listen.

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