moderate heart failure need some advise

[firstdates]

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.

[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.

[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

[firstdates in reply to shwills]

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

[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

[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.

[firstdates in reply to fantasyfanuk]

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

[fantasyfanuk in reply to firstdates]

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.

[firstdates in reply to fantasyfanuk]

thank you for that x

[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.

[firstdates in reply to Lezzers]

thank you for that x

[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

[firstdates in reply to chrisbattle]

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

[chrisbattle in reply to firstdates]

Good luck! Let us know how it goes.

[firstdates in reply to chrisbattle]

will do thanks again.

[dembaba in reply to chrisbattle]

Hi, I was so interested to read your piece. I have exactly the same as you. My ejf was 5-10% when i first went to hosp. it now bout 26%. Wot type of meds are you on?? Ive had this for 9 months now and still sympomatic, would be so glad to know how you managed to get it up to 45%??? thank you,

[chrisbattle in reply to dembaba]

Hi Dembaba

I think the biggest thing that improved my condition was the medication. After that, following the Cardiologist’s advice in general such as healthy diet and moderate exercise.

My meds are spironolactone, enalapril, apixaban, carevidilol and digoxin.

Have you had cardio rehab? It will help with exercise and advice for other parts of your life. It may also help to meet with others with the same condition. Cardiomyopathy.org is a great resource and had regular UK meet ups (I’m in Dubai). During the pandemic they are trying to move to webinars.

I hope this helps!

[chrisbattle in reply to chrisbattle]

And by the way, I had a further check up last month and EF has now gone back up to 52%!

[dembaba in reply to chrisbattle]

Wow!! Im so jealous of your ejf!! and the fact you are in Dubai lol!! Thank you for getting back to me. I keep hearing a lot about digoxin. Do you think it is a good medciation to be on?? Ive just been taken off Ivabradine cos my hr was too low. For the last three days Ive only been on spironolactone, bisoporol and candesartan. To be honest, I have felt really poorly this week and Im suffering with extreme anxiety, poss due to Corona Virus. Im now avoiding the news at all costs!! Hope you are safe in Dubai??

[chrisbattle in reply to dembaba]

Thanks!

The digoxin was prescribed because I have atrial fibrillation, as a side effect of my DCM. So it may or may not be good for you depending on your condition.

One thing my doctor, and the support nurse at Cardiomyopathy.org, told me was to try not to concentrate on the EF Your symptoms are more indicative of how you are coping. Do you have many symptoms such as breathlessness or weariness?

[dembaba in reply to chrisbattle]

Ok. My symptoms are really bad fatigue and weariness. My breathing is ok unless I walk and talk at same time then I get a bit puffy. Going upstairs is fine. I sleep ok on two pillows and I don't take furosemide any more. I have no fluid build up in my legs or chest. My chest x ray was clear. My angiogram was clear, I do not have blocked arteries. My condition was brought on by a bout of really bad flu last winter. May I ask how you got your DC?? The more weary and tired I get, the more anxious I get. I am a real "worry guts", which I know does'nt help!!

[chrisbattle in reply to dembaba]

Have you tried call the nurse at Cardiomyopathy.org? They are brilliant and very supportive and helpful.

It is a scary condition, especially so soon after diagnosis, and now that coronavirus is a pandemic. I was also quite weary after diagnosis, and some of this may have been due to the medication.

It took about nine months for me to show serious improvement (I was diagnosed in August 2018). The cardiologist thinks it was caused by a virus, but we don’t know which one. But having said that, knowing which virus would make little difference to me now.

[dembaba in reply to chrisbattle]

I have a heart failure nurse at a clinic, they are currently closed due to the pandemic but they did call on friday to check on me. They have arranged a telephone appt with my gp for tomorrow to discuss my anxiety. To be perfectly honest, the only one I have faith in is my cardioligist, and to speak to her privately costs me £150 a time!! I have no faith in my gp surgery as last month when I went to see him because of side effects, he gave me a wrong diagnosis. Said I had pulmonary hypertension, was seriously ill, and not to expect to live more that 3-5 years. I took me another £150 to find out this was untrue! Plus Ive recently had a mammogram scare and had to have a cyst removed and a couple of weeks ago, an emergency optician appt to learn I have "floaters". Perhaps, you can understand why Im so anxious, this is without the trauma of covid-19!! I have been on medication for 9 months, but don't think they have it exactly right yet??

[chrisbattle in reply to dembaba]

Very sorry to hear all the troubles you’ve been through. I hope you get answers and support soon

[dembaba in reply to chrisbattle]

Thank you.

[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

[sharmapn]

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

[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.

[dembaba in reply to chrisbattle]

spirionolactone i take, along with canderstartan and bisoporol, ive been taken off ivbradine cause heart rate was too low at 48.

[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.

[firstdates in reply to Petermck1]

good to hear from you all and thank you