Newly Diagnosed

[Fismith69]

Hi, I’m 48 and newly diagnosed (1 week) with Heart failure, trying to stay really positive but feeling quite over whelmed by it all, my family are being fantastic but would love to chat to someone in a similar situation. Thanks in advance x

[skid112 Heart Star]

Hi there and welcome to the forum, sorry to hear about your condition. We have a number of members with similar and I'm sure they will be along with their own experiences and support, being the weekend it may be a little slow.

Good luck Mark

[Fismith69 in reply to skid112]

That’s fine, not like I’m going anywhere soon 😂, just move to have a good support network! 😊

[Lezzers]

Hi, my husband was diagnosed 5 years ago with HF, initially it is overwhelming & scary. There is a foundation charity called Pumping Marvellous who also have a confidential closed Facebook group for people with HF, their families & their carers. Everyone there knows what you're going through & the help, support & advice I've had from the group has been amazing. Groups like this site & Pumping Marvellous are so helpful

[Fismith69 in reply to Lezzers]

Thank you! I looked at the group on Facebook but it says it for nurses? X

[PamBG in reply to Fismith69]

There is also one for people with heart failure and their families. The one for nurses is a separate group.

I was diagnosed with diastolic HF at the very end of November and still feel “new” too. There is a kind of emotional shock that I’m needing to process. I think this is normal.

[Lezzers]

I've never seen that one, not sure how you get to it! That particular group is just for professionals as the charity does a lot for research, educating professionals re health care, etc. Health professionals are not allowed to join the support group. I'll find out how to get to the one for you & come back to you as I can't remember how I got to it!

[Lezzers]

Try searching "help for hearts" on Facebook. Let me know if you have any other problems x

[Helenmud]

Hi I was diagnosed in October with hf. I have dilated cardiomyopathy and fast af. I know what you mean I have read so much on the condition but still find it hard. I feel that the condition dictates to me and not me controlling the condition. I recently moved jobs to be closer to home to cut travelling time down and also dropped a day as tired. I've been looking for Someone who has the same too x

[Myfanwy04 in reply to Helenmud]

Hi. I have dilated cardiomyopathy and hf. I am more or less house bound now. Last week I had a right heart catheterization to check the pressure in my heart and lungs. After many tests I'm under Harefield hospital to go on to the transplant list.

[Helenmud in reply to Myfanwy04]

Thank you for your reply at present I'm having a tough time my emotions are everywhere and feel like just staying home and not working but then when I'm at work I have company and feel ok for a while so confused x

[kaspadalle]

I completely empathise with your situation. I found out last week and feel like someone has plucked me out of my life and threw me to the side.

If I can give you any tips, it would be;

a lot of symptoms are similar to anxiety symptoms so know your body. Dont immediately assume its the ticker.

Stay away from Google. Its hard not to but the more people I talk to the more I find its nonsense.

Heart failure is the most irresponsible use of the English language ever. I have what you'd term heart failure but currently feel great.

Listen to your doctors, nurses and get on support groups. For the latter beware. Some people arent as positive or talk vaguely. Remember Cardiomyopathy and heart failure are such blanket terms you arent necessarily talking to someone with the same thing as you.

Better to know about it and tackle it. Itd be lovely to live in ignorance but Id expect it to not be for long.

Go back to some normality. Feeling human fixes so much for me.

Get out for a walk.(weather permitting)

If you have any questions feel free to message or respond.

Also finally its not for everyone but I got in touch with a cognative therapist who helps with Anxiety disorders and that really helped.

[Doris2010 in reply to kaspadalle]

Hi thank you for your post the words really help, can I ask how HF is actually diagnosed? My mum was admitted to hospital in December with breathing problems had a ecg & Echo they said ok & just viral, she hasn’t felt same since & convinced it’s HF I’m wondering from what you say if it’s anxiety?

[Lezzers in reply to Doris2010]

Hi Doris, My husband was told after an echo & ecg but he'd had a heart condition for 20 years so it was to be expected I suppose! I believe they use other other factors as well, does your mum suffer breathlessness, swollen ankles etc. I think they're also able to tell from some blood tests.

Has your mum been back to her GP & told them how she feels. Xx

[Doris2010 in reply to Lezzers]

Thank you for your reply & yes she’s often breathless & has swollen ankles but doc put down to her taking Predisone (steroids) so it’s all a bit confusing which is why I asked.

[Lezzers in reply to Doris2010]

Breathlessness & swollen ankles don't always mean HF. does heart trouble run in the family? If so, does her GP know? has your mum told the GP she's worried she could have HF? I believe you're able to contact heart nurses through this site that may be able to help you more or put your mind at rest. Xx

[Fismith69 in reply to kaspadalle]

Thank you so much, I’ve joined a few groups on Facebook and some people paint a very bleak out look! I’m still in the early stages and feel like I’ve been told nothing , don’t even get my MRI til end of April, so feeling like I’m in limbo atm xx

[golfgod]

It's like being hit by a train at first.read all they give you look up heart failure the bhf has really really as many great pamphlets regarding heart failure.good luck I'm new to this site also and being told you have heart failure is hard to except,but does not mean you can not live your life.the main advice I will offer is stay positive

[Fismith69 in reply to golfgod]

Thank you, I’m going to order some of the leaflets, and my family are being really positive which helps a lot, it’s just sometime when you’re on your own your minds starts working overtime x

[Lezzers in reply to Fismith69]

Hi, just a word of warning, please don't Google as the info on the web is generally out of date, incorrect or just not applicable to you & will quite likely scare the life out of you! Please stick with sites like the BHF or NHS. Certainly don't hesitate to ask questions xx

[Fismith69 in reply to Lezzers]

Ha ha! Learnt my mistake with that one already, that’s why I’m sticking with BHF , there’s so much positive info on there! Xx

[Eyeballs]

I totally agree with what kaspadalle says. I would add this. At least you know what you have, so in a positive way you have to opportunity to make informed choices. There are a lot of people out there who don’t know they have heart disease and are walking around like ticking time bombs. I have severe Asthma and put my breathless down to it. Turns out I also have HOCM, which probably been thickening over the past 10 years. There’s me trying my best to stay active by riding into work and swimming. Thinking ‘this Asthma won’t beat me!’. But over the past few years the silent thickening of my heart’s wall (HOCM) was the main reason. Sure it’s a right pain in the behind. Especially over the past few days and all the snow. My 11 year old daughter is bouncing around in excitement wanting to build a snowman. Something in the past I wouldn’t blink at. This time it’s different and have had to take things very, very slowly. But at least I now know. Each sufferer is unique, so listen to you GP/Cardiologist. I’ve joined a couple of sites and at first read the updates like the BBC’s breaking news. This has now diminished a lot as I’ve learnt my ‘new’ own limitations. Good news is I’ve now got a blue badge and will be parking virtually outside Twickenham Stadium for the England vs Ireland match! Just because you have heart failure doesn’t mean life has to stop. Stay positive and keep your family close.

[Fismith69 in reply to Eyeballs]

So jealous.... about the rugby ! That’s what they’ve been treating me for.... asthma! No wonder non of the inhalers they kept giving me weren’t working! I honestly don’t think I have asthma but I’m going for a reversibility/ spirometer rest on 2 weeks just to get a definitive diagnosis! I haven’t even used my inhalers since this was diagnosed x

[Heartlady1]

Hi Fismith sorry to hear your news and of course this will be a very worrying time and had Ivan sure knocked you sideways. It does at first... and there are a range of emotions we go through on hearing this diagnosis. However I agree with others that HF covers a wide range of types and levels. So it is important t to understand this first, which you will do through the varying tests that are carried out.

But you can live a good quality life after this diagnosis. I was diagnosed at 33 with HF .... i spent time having tests.. then was put on tablets and apart from not being able to climb hills .... I was able to resume a full career, look after my young son, holiday abroad etc. Now 23 years later my heart has deteriorsted further and i have needed extra help in the form of a CRT D device. this was fitted in sept and has helped me to feel great again. And should help to stop further deteriorisation and could even improve my heart function. I am certainly feeling better for it. So I am now 56 and following my implant I have just booked a cruise for September!.

I hope my story gives you faith that there is life after diagnosis of HF and trust me things have come on in leaps and bounds in the last 23 years. I went through a huge range if emotions upon discovering I had HF and this too is natural and normal, however my advice is listen to your doctors.... write down any questions or worries before you see the consultant .... and ask them all

And now that this has been discovered remember you can get the help your heart needs.... which will help you to live a good quality of life.

All the very best and if you have any specific questions please feel free to PM me.

Karen

[Fismith69 in reply to Heartlady1]

Thanks Karen, it’s good to know that you’re not left on the scrap heap , I’m only 48 and feel like I’ve got so much left to do! I’m not sure what level my HF is yet, I’m hoping for some answers in the next few months, the only thing I’ve been told is to watch my fluid intake (1.5 litres) and to not eat food high in potassium.... that’s it! X

[Heartlady1 in reply to Fismith69]

The good news is that they are not rushing you into hospital. The waiting for the full diagnosis is the worst bit.... but it's good to have all the tests ... which will allow them to treat you in the best way.

And you are definitely not on the scrap heap.... far from it. And what I have found is that I appreciate everything more... so enjoy life more and I don't worry about the little things.

Do keep us in the loop on how things go as we on this site are all here for each other. Similarly if you ever feel the need for a rant then feel free.... we are all here for you.

Karen

[Fismith69 in reply to Heartlady1]

I did take solace in the fact that there doesn’t seem to be a great amount of urgency, just want to try and get back to some sort of normality . It’s made me take stock of my life that’s a fact,for better, I don’t feel as though I moan about stuff as much any more 😂xx

[October27 in reply to Heartlady1]

Hi, my husband has cardiomypathy following cardiac arrest in October last year. He has a CRTD fitted and is recovering well. I just wondered how the cruise went and how are you?

[Heartlady123 in reply to October27]

Hi October27... glad to hear that your husband is recovering well following his CRT device implant.

In regards to myself unfortunately I had to cancel my cruise last year as unfortunately my lead fell out ( it only happens in 1% of cases so please don't worry) ... sometimes I wish u wasn't quite so special 😊. So I had a further op in August to put in a new lead and fingers and everything crossed it's settled in nicely. I am getting my fitness back.. . I am up to walking 6000 steps a day... and hoping long term to get to 8000 a day... but back to feeling good again ( this device is amazing so was even worth the extra op!)

I have now just booked a holiday to Majorca... I was worried about the queuing and standing up for long periods and being in crowds... so I have called the airline and they are going to provide me with special assistance... which means they whisk you through the airport baggage and security.. both at the UK airport... and at the Spanish airport. As I am going on my own this seemed a sensible none stress way of getting through airports. Then it will be chill out time on a sunbed with a book 😁. It is a bit nerve wracking but it's important to keep living and enjoying life... make things as easy and stress free as possible... and then go for it

Are you planning a holiday this year? If so I hope you both have a fab time Karen x

[October27 in reply to Heartlady123]

Hi, I'm sorry to hear you had to have another op but glad all is well and you are off to Majorca!! Hope you have a wonderful time and enjoy some lovely sunshine!

We haven't booked anything yet, he is still doing half days at work but may increase it gradually. It is good to know that we can now go abroad though we were thinking that we wouldnt be able to travel again!

Have a brill holiday!

[hearty1]

Hi I was diagnosed with heart failure last year. I had no Idea! It was a bolt from the blue and I couldn't believe it. I was also diagnosed with Unstable Angina and Atrial Fibrillation. I'm on lots of preventative meds which seem to be making me tired or is it my heart I don't know. Anyway I'm trying to be positive it's the only way. You try that too if you can. Best wishes to you.

[IanMK in reply to hearty1]

I was diagnosed with HF (LVSD) last August. I'm also on meds to protect my heart and I'm fairly sure that it's these that are slowing me down. My initial symptoms were that I got exhausted easily and this turned out to be due to fluid on the lungs. Other than that, I thought I was doing pretty well, health wise, for a 62 year-old.

[Nanne]

Hi BHF produce a fantastic booklet bhf.org.uk/publications/hea.... And also bhf.org.uk/publications/hea... Use their website for good information bhf.org.uk/heart-health/liv...

[hygge]

Hi Fismith69. I have been where you are, just looking for a bit of a hand hold and understanding but recoil in horror at some of sadness it inevitably brings. Notice I say 'it'. I'm only just teetering on acceptance myself.

My troubles started with an asthma diagnosis 2 years ago. Breathlessness on exertion and a fast heart rate. Long story short - 5 pneumonias since then. 1 infection causing mild LVSD although that has resolved itself and now at 55% but now January's echo showed up problems with the muscle pumping ability.

I see a cardiologist for the first time next week but unfortunately I have deteriorated this week and started on beta blockers. As the days go by my chest pain subsides and my breathlessness eases (my respiratory consultant doesn't think I have asthma now and it's always been the heart) but I'm still in a bit of a state. I can't do very much. I'm 38 and a mum of two so pacing myself isn't the easiest but I'm getting there.

'looking forward' to seeing the cardiologist next week and finding more out about this wonky heart of mine and then try to stabilise. 'they' say acceptance comes. I say it's slow. I've been in a very dark place but the more that happens the more I just roll up my sleeves!

Solidarity eh?!

[Fismith69 in reply to hygge]

Awwww very much so! I don’t know about you but I feel so angry and cheated that they’ve been treating me for

asthma, how can they get it so wrong?!! I find this site so helpful and positive, compared 2 one of the FB pages I’m on ( which I think I’ll leave) , I know we all love a moan once in a while and it does you good to get it off your chest, but I honestly don’t want to read about ‘ life expectancy ‘ and such like! You need to be positive ( hard I know, as some days are better than others) . I’m still in the very early stages of diagnoses, and I’m just thinking about being positive, not just for me but my family too!

Must be hard for you with having 2 young children ( mine are 20 and 23 ) but at least you’ve got a proper diagnosis now, and you will start to feel better, I know I have ( haven’t used my inhalers since I started the meds) . It’s going to be a massive learning curve for us and we’ll be there to help each other along the way! Xx

[hygge in reply to Fismith69]

Definitely! I don't know about you but I know I'm in a dodgy place mentally when I start looking for like-minded people and all the negative stuff just doesn't help.

I'm angry too. I've been taking steroid inhalers for 2 years that I just didn't need but I've bigger fish to fry so I'm trying, trying! to just let that go. The inhalers speed up my heart rate as well, something I really didn't need but at least we're on the right course now eh?

Oh dear, what a pickle! See you around

[laura_dropstitch Heart Star]

Hello, just throwing my hat in the ring as another person living well and happily with heart failure. I was diagnosed over six years ago and still doing well and feeling hopeful for the future. I have made changes to my life to cope with the tiredness (working less hours, getting a car, joining the gym etc) but they've all brought their own positives to my life too. Great to see the resoundingly positive response you've had from other HF patients on here. I really think newly diagnosed people need to hear that, I wish I had seen some of it when I was first diagnosed! Good luck with everything going forwards, hopefully the tests will allow the doctors to adjust your treatment and get you feeling as good as possible

[ClaireATP]

Hi, I can very much empathise. I had a HA three weeks ago and still trying to get my head round it. I'm surprised how resentful I feel when ordinarily I'm an optimistic person. From what I have read it takes time, oddly this makes me feel cross, no clue why! I am fully expecting to make a good recovery but must be realistic and understand how long this will take me, head as well as heart. All the best to you, stay positive.

[Fismith69 in reply to ClaireATP]

I know what you mean! Especially when you look after yourself, you just want ‘to be normal again ‘ I go through stages of feeling resentful and sometimes angry! I haven’t had all my test yet so still not sure of how severe it is or the long term prognosis, however since I’ve been in my meds , which are all a low dosage for now I feel like a new woman ( apart from the migraines which seems to be baffling them) so I do take some solace in the fact that I feel better than I have in months! I think trying to look at the positive side of things helps, although not always possible! I’ve found this site really helpful, please don’t google things, and don’t join any sites on Fb as they can be quite doom and gloom! Try and be positive but having a good rant can help loads 😂xxx

[ClaireATP in reply to Fismith69]

Have you had an MRI yet? I'm hoping mine and the meeting with the consultant afterwards will give me some answers. I have a part time job that I want to get back to asap but also surprised how my confidence in myself has gone. Initially I felt elated that I had survived, now I don't want this event to change my life. I realise how much I loved it just as it was! Nice to meet someone going through something similar. I have a daughter (21) at Uni, two sons (18 next week) still at home and an amazing husband who's been a treasure. So much of my guilt about how I don't want this to affect them. What this is doing to my head is ten times worse than any pain I've felt!

[Fismith69 in reply to ClaireATP]

Hi Claire, nice to meet you! No, my MRI is scheduled for the 12th April, so feeling like I’m in limbo a bit, I have 2 sons 23 and 20 , and my husband, like yours, has been blooming amazing! Don’t know what I’d do without him, he talks a lot of sense into me when I’m having a ‘wobble’ about it, just want the scans to be over so I can see what I’m dealing with! X

[ClaireATP in reply to Fismith69]

My MRI is on the 22nd - on my sons' birthday, or is that birthdays, not sure with twins? I'm having a good day today, drove one to school and managed a small walk with the dog who kept looking round as if to say 'how slow do you need to walk?' Slept all afternoon! Also helps to off load and know I'm not alone. Will let you know what the MRI 'experience' is like.

[Gmck]

Just been diagnosed with myopericarditis, AF, tachycardic cardiomyopathy. Not sure on what it all means so looking for advice. Been put on pills to manage it - rampiril, riveroxoban, foresmide etc but struggling to find out what I can/can’t do. Agree with previous posts that google is misleading

[Mrsbeevintage Heart Star]

I just wrote a long post and lost it ...so I will just say welcome and as you can already see on the replies you gave received you have come to the right place ..good luck

[Fismith69 in reply to Mrsbeevintage]

Awww did you? I hate it when that happens! Well thank you anyway! And, definitely, you’re right 100% xx

[Mrsbeevintage Heart Star]

Your welcome x

[Fismith69]

Birthdays I would say! At least you managed a walk though! One step at a time ! I went out and about today, I’m on the sick from work and I’m still leaving myself stuff to do that will get me out the house ! The only thing that I’m finding hard is the liquid intake, trying to stick to 1.5 litres is hard ! Especially if we go out for a meal at the weekend.

Yes, please let me know how it goes, hope it goes well for you chick xxx

[Chrisbarrett100]

Hi hows things. Iv recently myself been diagnosed so I'm in the same boat as you. But people on here have been great. This is a good place to be and find comfort with other people. I'll keep you posted on how mine is going. I was diagnosed about 3-4 wks ago and have my cardiac MRI on Wednesday. So in another couple of weeks should find out what happening from now on. I will keep you posted on how things are progressing if you want? May help you to sort of know the process of how things work and that. Obviously depends on your situation if I can offer any advice I will be happy too. Good luck and keep your head.👍

[IanMK]

I was diagnosed with Heart Failure last August. Like you, I imagine, I looked for Support Groups but couldn't find any. There is a local cardiomyopathy group that meets intermittently and there was a meeting planned in February. Although I attended, it was cancelled dues to the bad snow at the time . I was pleasantly surprised when I recently discovered Healthunlocked.

I have been off work since January as the stress of my job is aggravating my symptoms (I suspect the stress over the years was the trigger for the condition in the first place; no medical cause has yet been determined.)

My condition is still under investigation by the cardiologist but since progress with the NHS has been slow (e.g. a cardiac MRI scan in February with follow-up for results with the cardiologist next month) I have recently decided to go private; I am fortunate that this is an option for me. Having said that, my first private appointment was at the beginning of this month and my next appointment is the end of next month - the delay being due to waiting for some new diagnostic equipment to be delivered. While I have no issues with the skills or professionalism of my NHS specialist in the hospital 3 miles away, I now have to visit London from North Buckinghamshire to see my cardiologist, although he comes well-recommended and has an excellent reputation.

[Fismith69]

Hi all, just a quick update! Had the results of my mri last week (still waiting for my ct ones) I’ve been diagnosed with 1st stage dilated cardiomyopathy, still a bit overwhelmed with it all to be honest and not sure what to expect in future years! The consultant made me aware that I may need a pacemaker at some point , but because I’m symptom free ( thanks to the meds) he’s quite happy to review me in 3 months, but meantime I’m being referred to the community heart nurses to gradually up my meds. I’m hoping to try and find a cause for this as I would want to know if it was genetic , I’d like to prepare my 2 boys, well I say boys burg there 20 and 23 😂, just in case they inherit this condition! Thanks again for the support that you al offer, it makes all the difference xx