Hi, just about a week ago I was diagnosed with heart failure, finding it very hard to process this and feeling very alone x
Trying to process information - British Heart Fou...
Trying to process information
Written by
Spottedpig
To view profiles and participate in discussions please or .
54 Replies
•
Hi Spotted pig, it is scary when you're told you have heart failure but it just means your heart needs a bit of support. My husband was diagnosed when he was 57 he'll be 65 in May and although he's intolerant to a lot of the meds he's still living a perfectly normal life.
There's a number of people in this forum who have HF and I'm sure they'll be along soon with their (very positive) stories so you're definitely not alone here.
This is a very friendly forum so please don't hesitate to ask questions, if we don't know the answers someone will know where you will find them
Please don't Google HF there's a lot of info out there that is either out of date or just completely wrong. Stick with BHF/NHS sites and the patient led HF charity Pumping Marvellous.
Have you been referred to a heart nurse & has their been any mention of having an ICD fitted?
Best wishes Lesley x
Hi Lezzers I really appreciate your response thank you.. it’s early days for me I guess and hopefully I can soon have the same positive outlook you have, you’ve definitely given me some hope it’s appreciated.. I bet you are a rock for your husband. I have not yet heard from the heart nurse but hope to real soon,I was told at the hospital that she will help me lots and manage my meds etc, they said there will be a lot of tweaking to do with these as some of them may be bad for my kidney I have ckd so they will be monitoring me closely. I haven’t heard mention of having an icd fitted they are at the moment going to be watching my meds and my blood pressure.. Thank you again x
The heart nurses are the best. We would have floundered without my husbands nurse, she used to calm me down & tell me off for panicking! My husband is much more laid back then me.
Hopefully you'll hear from them soon, they are able to prescribe meds, arrange tears etc, they're your liason between your cardiologist & GP, they'll talk you through diet, exercise and anything else you need to know
Always happy for you to private message me if you feel I can help, but keep in touch here & let us know how you're getting on x
It seems to be a postcode lottery as to whether he will get a heart nurse or not. I have HF and AFand would consider I had good care from Royal Bournemouth Hospital cardiology department. This was over a period of around 15 months where I had various procedures and my meds were adjusted. I was then discharged back to the GP and with no follow-up. I also never had a heart nurse.
It is a bit of a postcode lottery unfortunately, but under NICE guidelines you should be referred to one if they're in your area.
I would contact your local heath authority to see if they're in your area. But once your condition is considered stable they too discharge you back to the GP's care, although you can usually phone them for advice.
the rampiril can affect kidney function-hence regular testing and slow upward dose increases.drink enough water CUT SALT to around 1gram per day (unless advised otherwise) ace advice from lezzers!!
Lezzers always give advice and you are not alone in feeling scared and lonely - we've all been there. The word "failure" is particularly scary but to cheer you up a little bit read this:
"Heart failure is not a disease. It’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible and the symptoms controlled over decades.
“Perhaps a better term would be stiff muscle syndrome.”
Scottish physician Dr. Trish Elliott of Edinburgh has her own favourite substitute term instead of heart failure: “insuffisance cardiaque”
More forum members will be along to give you advice and their stories - this forum has kept me going on many a day when I have felt isolated and "no one understands." It will improve - it;s just it takes a while to adjust to what has happened. Take care - you are still you but feeling fragile - rest ass much as you can.
thaat should have said Lezzers always gives good advice.... sorry Lezzers should have proof read that but a non alcoholic full wine glass was thrust into my hand so pressed the button. Now slurping happily.....
Enjoy your slurping ☺
It;s tragic that a non alcoholic once a week glass of wine causes such excitement - I think I am embracing my inner geriatric!
😂
• in reply toCalliope153
Can you recommend a good non alcoholic wine? Preferably white 😀
I love Trish Elliott's description
"insuffisance cardiaque”
My Cardiologist is a Heart Function Improvement Specialist
Heart failure is an unnecessarily gloomy description
hi milkfairy what is his name and hospital.i inherited some money recently and have zero interest in fast cars and the like, but if there is a potential treatment available i am interested-thanks!!!
Thank you so much 😊
you see here we go more positive news from a knowlegable poster!!
I had this feeling since my boyfriend had a heart atack exactly 3 weeks ago.Thanks God he is fine now.I m still worried too much maybe,and this shock gave me a lot pain,phisically and mentally pain.i just found last night this forum and its really very helpful,i received some replays and i start feeling better when people with same situacion gave me hope.i forgot to say that my boyfriend is 28 years old.i hope you are fine and just be optimistic
Hi Alexa445, I was 28 when I had to have a new aortic valve. It was a very scary time and it took me some months to come terms with it. I am now 67, have two sons and four grandchildren. Heart issues can be managed and allow a fully active life.
Im glad to hear that,all this stories makes me feel better,i really needed to hear this from people with same situation,more or less.I am making in my mind a lot of bad ideas and sometimes i think that this nightmare will never end and this thoughts and anxiety will never go away.I read a lot of awfull things on the internet which make me feel more and more afraid of...now i just read that is a big chance to do a stroke after a heart attack...i know i am ipohondric like crazy.Thank you a lot for your replay.Best wishes to you
It is an amazing forum,I was put in touch with it by the pharmacist at my doctors and I for one am very glad that I joined,it’s certainly giving me hope you are all amazing. So glad your boyfriend is on the mend, for that to happen to anyone is devastating, he is very young though, take care both of you x
Yes,every single person from here is amazing,and sharing your thoughts with someone who understand you is helpfull.Best wishes to you😊
So true best wishes to you too 😊
Hi Spottedpig
Welcome to the forum.
Yes it is scary when you hear the words heart failure. It's a terrible phrase, which I understand is only used in the English language, other languages have a less dramatic description for it.
I had a heart attack/cardiac arrest in December 2018, and after an Echo was told I had an EF of 30% - therefore heart failure.
I prefer the name Impaired hearth function, your heart isn't failing, it just isn't able to pump as much blood around your body as it used to be able to. The actual number is not something that the medics are that bothered about, they're more interested in how the patient copes with the condition, for that they use the New York Heart Association classification system, link below:-
heart.org/en/health-topics/...
There is a lot that can be done to mitigate the effects of heart failure, first and foremost is the medication, which I'm sure you're finding totally daunting, I certainly did. It may take a while to optimise your medication, but one that's been done you should see improvements.
Beyond the medicines there are things you can do, I stopped smoking completely, stopped drinking for the first 6 months, changed to a Mediterranean diet, lost 40 lbs in weight to get my BMI down to 22 and went to cardio rehab gym and got a lot fitter
13 months down the line I have been discharged from the care of the consultant, my EF has improved to 40-45% and I'm feeling excellent, so there is light at the end of the tunnel, but I imagine as you've only just been diagnosed you'll find it hard to see it that way.
I assume that you didn't have a heart attack, hopefully they have explained why you have developed heart failure, there are any number of causes, including, cardiomyopathy,a congenital heart defect, heart value disease, high blood pressure, diabetes, to name some. If they can point to a cause, that is an area where life style changes may make a difference.
The BHF produce an extremely helpful booklet on the subject which explains everything in some detail, link below:-
bhf.org.uk/informationsuppo...
Finally Chronic Kidney Disease (another very poorly titled condition!) The main causes are diabetes and high blood pressure. After my HA tests showed I had Type 2 diabetes and high blood pressure, (the former almost under control, the latter now completely under control) so I have Chronic Kidney Disease stage 3. My GP didn't think it was important to mention this first, instead just put it on the list of my problems in PatientAccess - queue freak out and request for appointment. It seems the stage 3 is quite common as we get older (I'm 65) and GP not concerned, just said they'll monitor it at blood tests to make sure it's stable -so if you're stage 3 I don't think you need to worry about - it's been spotted and will be monitored by your GP
Hope some of this helps. Best Wishes
Excellent explanation
Thank you very much, I'll send the collection plate around later 😊
No problem. I've got some paper clips & pocket fluff I can spare 😂
Hi Spiritofthefloyd, thank you so much information that is very helpful I will read and try to digest it all.. it is early days and all I can hope right now is that I follow in the footsteps of all you lovely people on here and get to a place where I come to terms with it all,I’m sure I will I’ve always been told I’m strong and “these things are sent to try you” don’t feel very strong at the mo but I think with the help and support on here it will come a lot quicker than I think.... Yeah I do worry about my ckd in all this,I have had it for a long time,it transpired after I had one of my kidneys removed some years ago as the kidney I had remaining had over worked for the poorly one,I am currently stage 4 but the cardiology consultant said they would monitor my meds closely and do everything in their power for me to keep my kidney,I trust him to do all he can. You take care and thank you again x
Hi, I was also surprised to suddenly see on Patient Access that I had stage 3 kidney failure. Why didn’t anyone tell me, why didn’t anyone explain?
Also spent 5 hours at Cardiology clinic last week, had Ecocardiogram, told there was a worry, had ECG, bloods and then told I could go home but they wouldn’t tell me or explain what the worry was as they didn’t have a Doctor running the clinic. I’ve written to my Cardiologist for an explanation. Why are we left to worry with only half the information, we aren’t children, we need the full picture.
I agree. When I seem that on Patient Access I rang up for appointment. She explained it was nothing to be worried about most people develop some degree of kidney failure as they get older, plus the meds have an effect - fair enough, but a phone call could have avoided me hogging a valuable appointment slot!
brilliant keep this explanation for future posters.Is that pink floyd by the way!!
Thank you - yep got it in one - Pink Floyd!
good old david gilmour-played guitar for years and understand his style"beautiful" player-always loved high hopes and coming back to life-much later stuff but great!!In the 70's i used to listen to "dark side" on headphones and vinyl a truly amazing experience as a teenager!!!!copy and re-use that post its spot on and will help a lot of people (including myself!)
First seen Pink Floyd in 1966 in the Marque Club (sneaked in, only 12, cousin worked for EMI, so was able to get in) Seen Roger Walters doing The Wall and seen David Gilmore live. Watched them when they reformed for Live8, totally over the moon when they finished their set with my favourite track Comfortably Numb - literally stopped breathing - awesome.
great stuff!!!
You have my ear Spottedpig. Feeling alone - it's very much the shock I think, when you receive a diagnosis like this, because no-one else in in your life can put themselves in your shoes. I still feel like the proverbial island, surrounded by wild and unfriendly sea, despite having very caring family around me. But it gets easier - sounds glib, but it is beginning to get easier for me. Just remember, we have the amazing NHS (long may it last) to help us!
To know I’m not the only one that had faltered like this OldHippy is so reassuring,thank you for those words, I have felt like I’m going mad and felt like my head is going to explode. Yeah the NHS don’t really get enough recognition they have been brilliant with me. Thank you again 😊
*faltered* should have been *felt* I love predictive texting lol
Spotted Pig - Thanks for your honest sharing of feelings. It helps others who are facing 'the news' for the first time.
Oh you are not alone. Massive panic since I was diagnosed. I think it just takes time. Ended up in a and e tonight. Suspect it is the evil panic having had a angiogram yesterday. Lots of people here to help. X
Hi. I really feel for you. I was diagnosed with CVD just 4 weeks ago. Different diagnosis but still a shock. I just want to let you know that I do feel better after 4 weeks than I did after one, so you might find the same , The responses on this forum were brilliant and really helpful. And keep off the internet!
X
I was told I’m in heart failure about 2 weeks ago. Although I knew with my condition it was going to happen at some point it’s still very scary. I’m waiting for an appointment at the Newcastle freeman hospital to get an assessment for transplant
We know how it feels, we are in same position with my partner, its not a nice feeling, take care
Hi I found out I had heart failure in April last year and It was a shock it never entered my head I would have that I was in hospital for a week having heart monitored and them came the tablets so many a day I couldn't cope told my gp and they arranged for them to be put in blister packs it's so much better my heart doctor at the hospital is lovely and they have a heart nurse department who I go and see and she checks everything is ok there are things I cant do but still try to live a normal life I live alone and don't have much contact with my family and they don't care anyway but I do have a few good friends who are neighbours as well who are there for me your husband will come to terms with it but it will take time but like others has said dont Google heart failure because it's a load of rubbish what it says try and find out if his heart doctor has a heart nurse and then if your worried about anything you could phone them but remember you always have us at health unlocked good luck
Good morning to you
Well you have arrived at the right place for advice and guidance. You should look upon it as a gateway where almost everything you will ever need to know is at your fingertips. When you go get to hospital and the checks you will be put through to assess just where you are with this problem, you will have access to the British Heart Foundation (BHF) booklets on a wide range of subjects relating to heart health. I would highly recommend your getting all of the relevant ones to you and keep them close to refer to when you can’t remember an answer, or have a worry not yet answered.
We are a funny race, we think we will live forever and will never have anything wrong with us! I remember at the age of 21 being told I would have to begin wearing glasses = I was devastated that my eyes had deteriorated and needed help – but was assured this was quite normal – for some and many people had the need to wear glassed. Goodness and next the loss of a tooth! Then hair loss, I was falling apart, all before 28.
We all know about the risks we live with and what we should and should not do and the consequences that could occur. But as already suggested no one believes they will become really ill – really? I will begin tomorrow, at the New Year, after the holidays, when I get married – and then whoosh – I have a problem. Some of us will be lucky and be given a second chance, unfortunately some will not.
I was given a second chance, just as you were and it will probably only happen once so my first word will be not to squander the chance you are given and do everything you are asked to do. With life changes, diet and exercise almost anything can be overcome and many people declare that they are fitter after a heart event than they have ever been before and go on to live long and healthy and productive lives with no or virtually no impediment what so ever. Trust you heart team and believe they are working for you. After my event and bypass surgery I was told everything was the best that could be expected of a fit man of my age and if I look after my investment, I will lead a long and productive life. What more could anyone with to be told after a heart attack and open heart surgery.
A simile that does make some sense is referring my life to a family car that has been well used and begins to leak oil through a worn engine and that goes into the garage for a rebuild. When it comes out of surgery, it will have many new parts and will look and run like a new engine but because of the year of manufacture, there could still be flaws but nothing to worry about if you take care of the engine – don’t flog it, race it or believe it is faultless. Remember to change the oil and filter and treat it with tender loving care and it will serve you all of your life.
We made it - look after what you will be advised and given and cherish the second chance.
Good luck and my very best wishes to you.
Hi spotted pig (great nickname) i am sorry your struggling, its hard when we get diagnosed with something to take it in. I too have heart failure at 44. I have congenital heart disease. I am living a fairly normal life though, yes i get very tired very easily but youll learn to go with it and listening to your body is the best thing to do, if its telling you to rest rest, people will undestand. Hugs sara
hi i was diagnosed as well.After you have seen all the specialists you will understand its not a death sentence but a lifestyle change.hit me hard as well....
you may need up to a year for the meds to be in full effectand you will need a lot of patience-no choice im afraid...
stay on the form lots of positive practical advice here from experienced people .
STAY OFF GOOGLE. I commented on this to a nurse from the cardiology department.she said "even i will be dead if i believe google and there is nothing wrong with me!!!"
stay strong and aim for small improvements weekly.
I was diagnosed with HF in August, am 57. This forum has been wonderful as there are many living decades with HF. I changed my diet and have taken cardio exercise seriously and almost 6 months later my echo saw a 10% improvement in my Diastolic dysfunction which is normally hard to improve. There’s lot of reason to have hope and just see HF as a wake up call to take better care of ourselves.
It really is a horrible frightening name for a condition that can be helped. I've said many times on here tat my mum was diagnosed with heart failure in her 20s after having toxaemia in pregnancy with me. This was 1940s so no NHS and no treatment. She lived to be 70 without any treatment EVER even when she had another pregnancy with eclampsia. The only problem she ever had was having to have a hip replacement by epidural instead of a general and getting out of breath on long slow inclines and she was always a heavy smoker of woodbines.
Hiya, i was and still am in the same boat as yourself. I was diagnosed last September after just a few days of brethlessness. This hasn't happened since then. I don't even feel ill yet i'm in heart failure. At first i was very annoyed but i'm numb now...I have a lovely " heart nurse " who keeps saying i look so well, that's cause i feel well !!
I now take tablets every day, that's the only changes i've made so far.
I'm wishing you all the very best with your journey and please feel free to message me anytime. X
Hey there, It is completely normal to feel what you are feeling. Try not to focus on it. You will be fine in time and give your worry over to God.
Hi, as you can see from others who have already posted you are not alone, someone here is always ready to listen and try to give you advice. We have all had that scary feeling, it’s only natural. Heart Failure sounds scary but as others have already said it really shouldn’t be called that. You will be watched as you said and your meds monitored. On wards and upwards!
Best wishes
Please don't panic. I was diagnosed with dilated cardiomyopathy - heart failure - two years ago. I, like you, was shocked and couldn't understand how as a non-smoking, not overweight vegetarian managed to get a diagnosis like this. Anyway, it's fine. Honestly. I am still working, do zumba and yoga and walk the dog at least a mile or so a day. I do have symptoms and I am on lots of meds but if these are keeping me well I am not going to question it.
The nurses are the best source of information and they are often on the end of a phone so please note your questions down and ask what is worrying you.
Good luck and try not to worry.
Not what you're looking for?
You may also like...
Still trying to process the news…
Hi. I’m new here. Yesterday I was diagnosed with hypertrophic cardiomyopathy and since then I have...
A lot to process
It's been 9 weeks since I was diagnosed with coronary artery disease and I'm schedule for surgery...
Trying to make sense
Short background, edited to clarify - 2 months ago exactly I ended up in A&E with chest pains......
It’s a long process
Hi all, am Ian a 49 year old former heavy drinker, smoker and junk food specialist.
In March of...
Trying to do better
Hi I have just recently been told my cholesterol is too high at 8.9, my blood pressure is also too...
Query BHF website information 
Information sharing - uncommon conditions
Missed Information
Reliable information 
Good information
