Finally Diagnosed Yesterday.

Just wanted to join and see what it's all about here. I'm pretty scared having found out as the hospital doctor described mine as "Quite advanced". They put me on 40mg Furosemide and 2.5 mg Biscoprolol. probably a daft question but roughly , when could i expect to feel a bit better? I'm very tired, can hardly walk upstairs and not sleeping, also, i'm very very breathless today.

[Tos92]

Hi Hidden

I’m really sorry to hear you’re in this position. You don’t state what you were diagnosed with. Had a quick look on your bio and I see you have tagged yourself in heart failure, is this the diagnosis?

Nonetheless, I’m glad you found us. This is a great place for support and you will find that many others are, or were in your shoes. I’m sorry I can’t advise on the medication side of things, but there will be plenty of others here who will share their experiences with you.

All the best Telboy.

Tos

[Hidden in reply to Tos92]

Silly of me not to say it was hf Tos. Thanks for your reply. Yes, there are a million things running through my head right now but it looks like i've came to the right place.

[Yumz199725]

Hi Telboy62Very warm welcome to this lovely forum. You must be so overwhelmed having just found out you have heart failure 💔. I don't have experience with this as I have congenital heart disease ( you can read my bio for more info) there's alot of members who can relate to your experience of heart failure xx I know you must feel scared so I wish you all the best and keep us updated on your health ❤️

[Hidden in reply to Yumz199725]

Thanks for your kind reply Yumz.

[EU95PTM]

I can highly recommend the charity Pumping Marvellous for easy to understand information about heart failure. They have a website and also a Facebook support group who are incredibly supportive and knowledgeable. I’m a year into my diagnosis of HF and at first it was really scary but I have learnt so much, the medications have helped improve my situation and keep me stable. Wishing you all the best.

[Hidden in reply to EU95PTM]

Thank you so much. I'll check it out.

[Jaskei]

Hi, Sorry to hear your recent diagnosis.I was diagnosed with HF 17 months ago. It's very scary to be told this. In my experience it took a few months before I started to feel the effect from the meds as they have to play about and tweak them until they find out what works best for you. I had a pacemaker fitted 2 weeks ago and am on several lots of meds. Stick with the group, its such a help talking to others who are going through the same thing as you. Wishing you all the very best and if you have any other questions ask away.

[Hidden in reply to Jaskei]

Thank you so much Jaskei. Yes, I'll be sticking around here. Great group.

[uzininemm]

Evening Telboy, sorry to hear that you have joined my club (and that of of many others).

Firstly I have been in HF for over 2 years now, am on 7 different meds, but I can tell you that whilst you can't undo or repair heart failure there is a positive way forward but it will take time.

Many have been on hear a lot longer and you will get to read alot of positive stories going forward.

When I left hospital after a 14 day stay I could barely walk 50 yards with a stick now I can a hour cutting the lawns and 50 minute sessions at gym.

I don't know what your med team have told you, but have you been offered heart rehab yet, if yes make sure you take it up, if not ask about it. You really won't regret it.

In addition you should limit all fluids to 1.5l a day, eat healthy (plenty of veg), BHF have a very good recipe guide and avoid any additional salt or go for low salt options.

If you want to k now anything in particular just ask there will be someone who will be able to help.

If you do your bit, then as I said things should improve but it will take time.

[Hidden in reply to uzininemm]

Thanks millions pal. Its the taking time that's worrying me to be honest. I'm really breathless right now and it's terrifying. I've not been offered any further help yet. All that's happened is was given the beta blocker and told to double water tab. I have a very poor diet as in I don't eat veg. Fruit isn't a problem but veg is a no no.

[uzininemm in reply to Hidden]

Fruit is good Tellboy, whilst you say veg is a no no, you don't say why.

The reason I say this, is this nasty event might just change how you look at things and try/do things differently, for example how about a veg curry (homemade of course, rather than a bought sauce), the flavours will hide the taste of the veg.

I have attached the link to BHF recipes they are straight forward and you don't have to be a corden blue chef. bhf.org.uk/informationsuppo...

In addition I have included the BHF link to healthy eating

bhf.org.uk/informationsuppo...

Have a read and see if there is anything there for you, at the end of the day you having nothing to lose and everything to gain by trying.

Good luck mate.

[devonian186]

There is heart failure and heart failure. Did you have an actual heart attack?

What is your ejection fraction as that is likely to form the basis as to how you need to proceed from now on. The medications will take a few weeks to kick in and settle down and may need tweaking but in themselves you are on a modest number of medications and modest doses so that is encouraging.

Yes, vegetables are quite necessary. There are very many types which can be eaten in many different ways. Which ones can't you tolerate as that will guide you to others which, prepared in the right way, you might come to like.

[Hidden in reply to devonian186]

Hi devonian. They said I may have had a "silent" heart attack sometime in the recent past. As for ejection fraction, I haven't the slightest idea what that means and it certainly wasn't mentioned to me. As for veg, I can eat a few basics in small doses. Tomatoes, spuds, sweetcorn, onions but if we're talking about greens, cauliflower etc I couldn't do it.

[devonian186 in reply to Hidden]

Have you got any follow up appointments? If they have told you that you have heart failure (which basically means your heart is not working as efficiently as it could) they would normally do a number of tests.

That would include a visit back to the hospital where you would be attached to a monitor and your heart scanned to see how effectively it is working. You may have had it done when you went into hospital initially. That would give you your EF, which is then likely to be the basis on which they treat you.

There should be a dossier of notes on your condition. These would normally be sent to your GP, or if the hospital intended to do more tests, may be retained by the hospital and a copy sent to your GP. So first things first, I think you need to see these notes and get someone-probably your GP- to interpret them.

If you can't eat greens I wonder if you are deficient in some essential nutrients. Again, your GP could advise on this.

[Hidden in reply to devonian186]

I have an echocardiogram on the 12th so hopefully will know more then.

[devonian186 in reply to Hidden]

That sounds hopeful. You will probably talk to a cardiologist immediately after and should be told your EF.

You must have a lot of questions you will want to ask. Can I suggest it would be a good idea to jot them down before you go? Amongst those should be your diet and need for nutrients normally coming from green veg.

An EF will record your heart function but around 60% -not 100%-is considered 'normal.;' The older you get or the less your heart functions at less than optimal efficiency the lower your EF will be. You will possibly be offered more medication or, depending on the results, other medical procedures. Please keep us all informed.

[fairgo45]

Hi welcome to our forum as someone already said join the group "Pumping Marvelous" there a mine of information. It depends what HF you have, if it's like mine it will be HFpEF preserved ejection fraction or it could be the other one with the reduced ejection fraction HFrEF.

Each of these can be treated with a couple of new drugs mine is Jardiance its meant to be for diabetics which im not but ,it has the effect of making breathing easier and having more energy.

If you take a look at pumping marvelous on Facebook you'll see lots of people talking about these new drugs.

How were you diognosed was it an echocardiogram or an Angiogram.

Good tip is don't Google it the info on there is very out of date.

I was scared as well but not so much anymore interacting with people like ourselves helps to reassure.

Janet

[Hidden in reply to fairgo45]

Hi I've been on jardiance for a few yrs for my diabetes its been helpful, now recently diagnosed severe aortic stenosis I'm hoping it will help that too whilst I await treatment

[Alison_L in reply to fairgo45]

Hi fairgo. I've been on Empagliflozin (Jardiance) for about a year now, and haven't noticed any difference

[fairgo45 in reply to Alison_L]

That's a shame Alison that it hasn't helped you,which condition do you have ?HFpEF or HFrEF the second one is when your EF is low sounds like you have the same as me preserved around 55/60

What dose are you on?

[Alison_L in reply to fairgo45]

I have HFrEF following a heart attack 5 years ago. My EF is back up to 40-45, but I have developed T2 diabetes, so cardiologist started me on 5mg of Empag, and then increased it to 10mg a few months ago. Next echo in November, but I certainly don't "feel" any better. But then, he told me I'd feel much better after a 2nd stent 4 years ago - I didn't then either!

[fairgo45 in reply to Alison_L]

Just may be the 10mg will be better for you it takes about 6 months on that dose to work.You have had a rough time with a heart attack and 2 stents then T2 diabetes your EF is good though, sending you positive thoughts hope your echo gives helpful information

Janet

[Alison_L in reply to fairgo45]

Thanks Janet x

[ITYFIALMCTT]

Echoing everyone who has recommended Pumping Marvellous.

[Bingo88]

Welcome to this friendly and helpful group Telboy62. You have been given plenty of good advice here and we all learn something new every day. I have only just seen about Pumping Marvellous. Any major diagnosis leaves us shell shocked and worried it's only natural. But you have plenty of support on here. Hope you get some answers and support soon. Brian

[Larneybuds]

Good morning Telboy.... big welcome to the forum where you will get lots of support and advice from fellow sufferers with HF plus from others who have all sorts of heart conditions. It was only last week when we were all talking to someone else new to the forum about the same topic. First of all the words heart failure are so scary to hear and I think most of us agree, they should be changed. You mention that you've been told yours is quite advanced yet you don't seem to be on much medication that supports that diagnosis. I am saying this because you also don't seem to have been given information as someone else mentioned, about your heart ejection..EF. If I were you I would certainly try to find out what yours is as a lot of us are on medication that assists with it and that change it for the better. Most of us are not medically trained but can give advice from personal experience so you will get lots of good tips and assistance with all sorts of questions you have.

As others have mentioned, Pumping Marvellous is a great source for information and British heart Foundation has so much help and information along with nurses who you can contact with any concerns, particularly if you can't speak to your GP.

It's really important to find out about diet and exercise and also make sure you have contact numbers for the cardiac team at the hospital. Have you been given a cardiac nurse to contact and have you been offered cardiac rehab? This is something I think most on here who have had a heart event will recommend you attend.

Finding out as much as you can from reliable sources and the appropriate medical advice will help you understand your condition more which in itself can make it all seem less scary. Once again.....welcome to the forum and don't be shy about posting with updates etc.

All the best x

[cimarosa]

Good luck; it must be alarming and depressing at first but medical science will be able to help you. Trust, listen and keep the faith. You will improve. Best wishes.

[BobDRedfish]

Hi,

I was diagnosed with heart failure 6 years ago after an AFIB event. It is, or was, a bit scary as the amount of information you got at the time was virtually zero (this is what's wrong, there's no fix, have a leaflet ). Don't know if it has improved since then.

However, the reason for the response.

First port of call I was put on Bisoprolol (I think it's just the cheapest default) and I found I couldn't walk more than about 200m without having to stop (I'd been fine up until the AFIB) so I went back to the GP and told her it was no good. I got moved to Nebivolol and have been pretty much fine ever since.

Took a while for my body to adjust to the medications, I would get cold easily, particularly fingers and toes, but that settled after a while.

I don't go out of my way to push myself but have tackled some pretty big gardening and building projects in the last few years and would say that life is pretty much normal for me (or as you'd expect at 65)and I wouldn't know anything had changed.

So, the bisoprolol may not be the problem, but it might. It's easy when diagnosed to believe that everything is part of your condition but it is always worth investigating the side effects of the treatment.

[Qualipop]

That term heart failure should be banned. It doesn't mean your heart is about to pack up. IT means it's not working as well as it should. The tiredness and breathlessness is to be expected but the bisopralol may be adding to it. It slows your heart so it's not working as hard but also reduces your blood pressure. IT can take a while to get the dose right and for your body to get used to it. You need to be talking to your GP or cardiologist for explanations and checks on your medication. Furosemide is a diuretic ( makes you pee a lot) It's to get rid of excess fluid build up round your heart which should help a lot. HF can be improved with medication. Write down any questions you think of so you don't forget and don't be afraid to ask.

[Hidden]

You have definitely reached a good bunch of people who have lots of experience. We may not be able to give medical advice but we all have experience of living with heart problems and issues also experience of being looked after by medical professionals. Now I did say a few days ago to someone else heart failure is the wrong wording and really needs to be changes to inefficient. Now I have a congenital issue only just found at 56. You can read my bio. So my heart was not manufactured correctly. But this is the strange thing I don't have heart failure. Its just that my right side is not made correctly and therfore my right ventrical. It basically has a small volume. I will not go into the details . For you structurally your heart will hopefully be fine. What has happened is the heart is not pumping efficiently may be caused by muscular., Age, genetics. Past Infections such as flue and current infection going around that carnt be named, But heart failure can be improved with medication and life style changes. You do need to know your ef (ejection fraction). My ejection fraction was initially found using an echo. Which did give an estimation. But the MRI was more accurate mine was 51%. Which is low normal. Now ef is basically ml of blood in and the difference of what is ejected out. No one can have 100% because there will always be some blood left behind in the ventrical. I hope you get some relief from talking to the people on here. It does help.

[Flimflab]

Hi Telboy62 I'm sorry you have had to join us, and I know it must be a stressful time. I may have missed it on the earlier replies but have you spoken to a GP or 111 about your symptoms yet?

One of the side effects of Bisoprolol (I assume this is the Beta blocker you are on?) given by the NHS is shortness of breath. Do you also have a cough with it?

The NHS advises calling a doctor or 111 "if you have shortness of breath with a cough that gets worse when you exercise (like walking up stairs), swollen ankles or legs, or an irregular heartbeat – these are signs of heart problems." Further details can be found on the NHS website:

nhs.uk/medicines/bisoprolol...

After speaking to a doctor the British Heart Foundation nurses are often very good at explaining symptoms from medications and action that can be taken there number is Call 0808 802 1234 (freephone). Our Helpline is open weekdays 9am to 5pm*

As others have said the overall tiredness is a common symptom as you gradually adjust to Bisoprolol although this can take a number of weeks

Let us know how you get on.

[Hidden in reply to Flimflab]

Hi Flimflab, I have only just taken my second Bisoprolol today and my shortness of breath and cough are pretty much the same as before so far. I have an echocardiogram on the 12th so unless things change drastically, I'll persevere till then and see what that reveals.

[Pug76]

Hi sorry to hear what was your diagnosis

[KIMMY60]

Listen to your body rest when you need, have some early nights sleep helps with everything, Gradually over time you should improve with the medication, if after a few weeks you don't see improvement speak to the doctor they may need to tweak medication