moderate heart failure need some advise - British Heart Fou...

British Heart Foundation
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moderate heart failure need some advise

firstdates
firstdates
19 Replies

struggling with Heart Failure Moderate.l have no quality of life lm still getting palpitations and drowning with thlem lm feeling fed up cannot do anything.lm on Ramipril my gp has done a referral back to the hospital said it might be March before i hear.l dont know which way to turn i feel abandoned left to cope and not able to enjoy anything.

19 Replies
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Lezzers

Hi first dates, I'm sorry to hear you're struggling at the moment. Do you have a heart nurse who can deal with this for you. ? One of the first things my husbands nurse used to ask was are you getting palpitations, his cardiologist also always asks the same thing so waiting till March does seem to be a bit too long.

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shwills

Hello

I was diagnosed with moderate heart Failure a few weeks back

I have persistently AF and also 2 leaky heart valves and heart block

I do know how you feel

I work and live alone and do really struggle at times, I am exhausted most of the time and find it hard to sleep with the persistent AF

All I can say is that your mind does get used to it somewhat I know that is not the answer as sometimes I am in tears

Speak to the heart failure nurse and let him/her know how you feel and see if there is anything she can give you or influence a earlier appointment

Good kuck

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firstdates
firstdates
in reply to shwills

how do i get a heart failure nurse.tjanks for your reply.

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shwills
shwills
in reply to firstdates

I was referred to one

Who did you see who diagnosed you?

You should speak to this person or/and your GP

I have a HF clinic in my area find out if you do

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fantasyfanuk

Hi firstdates. I’ve been diagnosed this week with moderate heart failure and been put in Ramipril too. It is hard not being able to do the things you want to and March is a long time to wait for answers. I don’t have a heart failure nurse yet but hope to in the future. I struggle to see a gp as well, as appointments are like gold dust, and that often makes me feel abandoned too. It’s hard coping with something like this but I’m hopeful that we will come to terms with our difficulties and get some quality of life back, which is my aim. Not to get back to how I was before, just to feel better than I do now. This forum is like a lifeline to me. I don’t post lots but read it every day and take lots of useful advice and support on board, even when it’s not about my particular problem. I hope it helps you like it has helped me, people are very supportive.

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firstdates

yes it does thank you for your reply how do you get a heart failure nurse.

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fantasyfanuk

I know there are some in my area but my diagnosis is so new, I haven’t thought to ask about it yet. I assume cardiology refer you but it could be your gp I suppose.

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firstdates

thank you for that x

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Lezzers

Are you in the UK? If so under NICE guidelines you should be referred to a heart failure nurse if they're available in you're area. Your GP or cardiologist should refer you. Have a look at the Pumping Marvellous website for advice about HF nurses, it's a great site for up to date & correct information.

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firstdates
firstdates
in reply to Lezzers

thank you for that x

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chrisbattle

Very sorry to hear your troubles. Diagnosis was the hardest time for me. The good news is that things got better.

my advice would be...

Don't google anything, only get info from your doctor, BHF, Cardiomyopathy UK or Pumping marvelous. (BHF and CM UK have a phone line to speak to specialist nurses if you need advice - don't know if PM do)

You may find it more comfortable to sleep propped up on several pillows, but also ask your GP if you can have a water tablet, and if you should limit your liquids and salt intake. This may reduce or remove the fluid on your lungs, which will make a big difference to your breathing and ability to move etc. it should reduce the stress on your heart as well.

I was diagnosed with Dilated Cardiomyopathy and mild heart failure in August 2018. My Ejection Fraction was 15 % when it should be between 55-70% (this is a measure of how efficiently your heart is pumping and measures the amount of blood in the heart that is pumped out with a beat.) After a year of medication (quite a few tablets, to be honest) my EF is now 45-50% and i have shown no symptoms. Once properly diagnosed and treated, you could easily have a better quality of life.

Try not to get downhearted, which is easier said than done, but speak to an expert and make a fuss with your GP! There are some great forums like this one, and some on facebook which will help you understand how others have coped.

Good luck

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firstdates

l have put a letter i. to my gp had a call to say they will ring me tomorrow for a chat thank you

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chrisbattle

Good luck! Let us know how it goes.

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firstdates

will do thanks again.

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chrisbattle

Another thing, the American Heart Association have an app called HF path. It has a dozen courses to explain heart failure, treatment and lifestyle., and a tracker for meds, weight and symptoms

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sharmapn

Hi. Can you share which medicine helped raise your EJ to 45. Did you do any exercises.

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chrisbattle

Hi Sharmapn

Sure. I went to cardio rehab, but only after the doctor approved it. He made me take complete rest for about a month until my AF was reduced enough for an MRI and angiogram. I was off work during this time. Since then I’ve been exercising three or four times a week. Running and only minor weights as told by the cardiologist and physio. But also making sure i rest when I can or need to. One of the things I did at rehab was walking up-stairs because I was a bit nervous. No problem now.

Meds

Digoxin

Enalapril maleate

Carvedilol

Sprionolactone

Apixaban

But everyone takes to the meds differently. Luckily i didn’t have any bad reactions, but lots of people do and can’t take the full dose or have to try alternatives.

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Petermck1

Sorry to hear how you are feeling. I’m in Kent and was referred to the heart failure team by my Cardiologist (my EJ was 39%) so I just got in. I was going to send you a picture of the book they left with me but don’t think or I don’t know how to do it.

7 months down the line I feel much better and have a further echocardiogram in November and hoping to see an improvement with the medication and CRT I had implanted a few weeks ago (I’ve had a pacemaker for 10 years).

Hang in there it does get better, if you don’t feel well don’t be embarrassed about going back to your GP though.

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firstdates

good to hear from you all and thank you

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