Diagnosed with heart failure. - British Heart Fou...

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Diagnosed with heart failure.

Snowfall123 profile image
12 Replies

Myself, hubby and children / grandchildren where in USA when my husband , who was feeling unwell since arriving, blacked out and was taking to hospital in Sanfrancisco emergency unit. He has been diagnosed with severe heart failure. We're are now home and under the N.Middlesx hospital who have prscribbed blood thinners and heart meds. Yesterday he has cardiac MRI at St. Barts. Now its just a waiting game until 14th June 2019 befire were are seen again.

I'm worried sick that somthing may happen before that and not sure if somthing else should/ could be done. he has lost 2 stone in weight and constantly coughing up mucus he feeking very unwell all the time and constantly falling asleep.

Is there and cooperation or treatment if we paid privately that may be available to help him. ?? Does anyone know?

Just feels like nothing is happening. Just keep taking the meds.

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Snowfall123
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12 Replies
Lezzers profile image
Lezzers

My husband also has heart failure, he was diagnosed in 2012 after having suffered a massive heart attack in 1997. He blacked out on a flight to the Algarve! Has your husband been referred to a heart nurse, under NICE guidelines he should have a heart nurse if they’re available in your area. They are fantastic for support, advice etc. They can change, prescribe his medication etc. They can arrange scans , hospital appts etc. Ask your GP for an urgent referral. It is scary to be given that diagnosis but the correct medication can make a big difference. Also, there has been massive advances in the treatment of Hf, medical devices such as ICD’s/pace makers etc make a big difference in quality of life. Bear in mind that if they were very concerned about your husband he would have been admitted to hospital. However, if you’re concerned you could ring the NHS helpline for advice, I rang them recently & a DR rang me back immediately. There’s also a closed Facebook group for people with HF, their families and carers. It’s a patient led charity called Pumping Marvellous, highly recommend joining as there’s lots of advice & support there. You will find that some people have gone from severe to mild HF &perhaps they can give you more advice than I can, at the very least if helps to know you’re not alone. If there’s anything I can help you with please don’t hesitate to ask, I’m far from an expert but have some experience. Hope you’re husband is feeling better soon x

Lezzers profile image
Lezzers in reply to Lezzers

Ps, you can always ring the Pumping Marvellous charity they're always happy to help or advise. The number is on their website

IanMK profile image
IanMK

You’d be hard-pressed to find a better place than St Bart’s. If they’d had concerns you would know. Try not to worry (though it’s understandable - the name is very scary). I was diagnosed with heart failure in 2017 and I feel as though I’m back to my old self after treatment.

I’m not medically trained, but I understand that the meds are intended to restrict the load on his heart to protect it, so no surprise that he feels tired and lethargic. He may get a build-up of fluid on his lungs but he will probably be on a diuretic for this.

Hanibil profile image
Hanibil

See cardiologist privately at The Wellington Hospital St Johns Wood London

Snowfall123 profile image
Snowfall123

Thank you. We've changed diet, no salt decaf etc however we do normally eat very healthy. Cooked meals loaded with veg( fresh) .

Thank you for coming back to me.

Prada47 profile image
Prada47

Dam I typed loads and lost it.

Hello Snowfalls I wouldn't rush to see a cardiologist privately they all more or less work for the NHS. Have they told you your husbands Ejection Fraction ? 55 % is excellent so if they have don't fret, if it's 40% or so that's still OK it's Symptoms rather than EF that is the concern.

I have Moderate HF currently have been Mild, Moderate, Severe, now back to Moderate living a pretty normal life OK a few problems but nothing that can't be overcome.

The MRI scan will have given the medics a good look at what's going on so they will know if an intervention or Medication is the way forward !!! Try to relax a lot of people with H F lead a pretty normal life style and more importantly have a pretty decent life span. It easy to say but a lot of us are living with H F it's not the end of the world honest. Lezzers has pointed you in the direction of Pumping Marvellous plenty of information available. Try not to use Dr Google he is a hopeless GP just guessing, but St Barts, will have the facts it's just a small wait !!

If you need more just ask

best Regards

Snowfall123 profile image
Snowfall123 in reply to Prada47

Hi Prada

Thank you for your reply and reassurance i really apricate it. (Hate when you write long txt and lose it) so annoying. Grrrr.

Discharge letter reads: in fast EF with HFREF (LVEF 35%)

he's taking blood thiner Rivaroxaban as clots on both lungs aswell. 6 other tablets including Digoxin 125mg.

Only has one kidney so worried that all this medication could cause problems.

I appreciate we are new to all this and learning and panipanicking .Its so helpful speaking to people on here. Thank you so much.

Just not knowing if I should be doing somthing else that was conerning me.

Thank again

IanMK profile image
IanMK in reply to Snowfall123

I was down to 25% at one point, so don't worry. As Prada47 says, just a short wait and avoid Dr Google. It's right that you should investigate, but keep to reputable sites such as the British Heart Foundation (bhf.org.uk) and the Arrhythmia Alliance (arrhythmiaalliance.org.uk).

Snowfall123 profile image
Snowfall123 in reply to IanMK

Thank you Ian

Prada47 profile image
Prada47

Hi Again

Just a question has your hubby had any other heart problems ?? When you are on Heart Meds some of them can Lower Potassium so a regular blood test will be carried out either via GP or Heart/Practice Nurse it's pretty standard. Not prying but what age is your hubby, it's just that it may help in pointing you in the right direction with questions to ask.

I have been on this path since 2015 after having By Pass surgery, with further Stenting in 2017. Heart Attack in 1982 was the beginning so 37 years of walking this route so a little knowledge has been picked up along the way.

Best Regards

Snowfall123 profile image
Snowfall123

Hi. No not at all. No heart problems in the past. He's been as fit as a fiddle at age 72yrs up until this.

Has always had high blood pressure but only started taking meds for that a year ago. No other meds.

Wow you've definetly been through it the mill and are still here to tell the tale.

Did you lose a lot of weight? Did you keep coughing up mucus and fighting for breath when it first started with you?

Snowfall123 profile image
Snowfall123

He donated one to his son 12 years ago..his son was on dialysis .

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