I've been in a bit of a whirl. Had no support from my GP, I had to go private, otherwise I would still be waiting. Not having a go at the NHS I worked for the organisation for nearly 20 years, it is under a lot of pressure.
Has anyone else got the same diagnosis, silly question I know.
Hi Caseyangel, sorry to hear of your diagnosis. My husband has HF, has had it since at least 2012. Have you been referred to a heart nurse?
Good evening. No just the Cardiologist so far. He's prescribed bisoprolol and ramipril which he is going to keep increasing if I tolerate well and my blood pressure is ok. I do t suffer with high blood pressure, never have. Found out due to dizziness, headaches and feeling tired
Dizzyness & passing out was the give away for my husband!! NICE guidelines are you should be referred to a HF nurse if they're in your area. Ask your GP for a referral, they're invaluable, they're your liason between cardiologist & GP. They can prescribed medication, arrange tests, etc. Don't Google anything, they'll be lots of advice/support on this forum. Theres also a patient led HF charity called Pumping Marvellous who are invaluable for advice & support. They also have a closed Facebook page which is also great for support for those with HF, their families & carers.
Thank you that is really helpful and so kind. How is your husband?
He's doing OK thank you, he has an ICD which is a great comfort. He does have issues with low blood pressure but he's currently watching Kylie headlining at Glastonbury so that should push it up a notch or two!! I believe there's also a forum here & a Facebook group for people with cardiomyopathy which could be useful. Being told you have HF is quite daunting but medical science is such that people with HF can & do live normal or near normal lifes & lifespans.
What is an ICD. that's funny about Kylie. How have you been coping? It is daunting isn't it? How old is your husband? (if you don't mind me asking). I'm 61.
My husband has just turned 64, he had a massive heart attack resulting in cardiac arrest when he was 42 which left his heart badly damaged so the HF diagnosis was no surprise really. An ICD is an implantable cardiac device, its basically a built in defibrillator that hopefully will shock his heart if he goes into cardiac arrest again. My husbands heart journey started 21 years ago so we've learnt to adapt & it gets easier to deal with over time. He deals with it much better than I do though, I'm a worrier, he's not & he refuses to let it become the focus of his life.
You sound lovely people. I too am a worrier as I have a severely disabled son, I guess worrying as become part of my life. Thank god your husband survived.
Thank you so much
You've been through so much, I'm so sorry to hear about the loss of your other son. It is lonely when you're first told of a life changing diagnosis & you don't know which way to turn. I hope we've helped in some way to show that it's not as awful as it sounds. Please feel free to private message me if there's anything I can help you with or if you just want to chat xx
Thank you so much, you have me so so much.
Night night
Good night xx
Hi Caseyangel.
I had a heart attack and cardiac arrest just over 6 months ago. The Echos I've had show that I have Heart Failure, I have an EF of 30%, but luckily feeling fine, under the NYHA classification I am Class 1 so which I have a low EF it isn't having much of an impact on me.
I understand when you talk about lack of support from your GP, mine is much the same. You definitely need to get a Heart Failure nurse allocated to you - they're a really helpful resource. They can monitor your condition, manage your meds, arrange tests - they understand the problems with HF and are very knowledgeable The people in cardio rehab sorted one out for me when they were copied into some corres from the hospital, my GP hasn't to this day mentioned a HF nurse!
It's a worrying time, but just breath, when you take it all in, it's not the end of the world. Whatever you do, avoid Dr Google! Best wihes.
Thank you for your lovely comments and taking the time to reply. Google frightens you doesn't it. I've never had any heart problems or problems with my blood pressure. So this has been a shock but kind of fits in to how I've been feeling for a while. I put it down to tiredness as my son is severely disabled and needs help with everything, which I love doing, as I lost my other son to the same condition. But I now feel quite lonely as I have not wanted to scare my son and daughter.
So getting your response has been so helpful and you have given me a lot of information.
I will ask the Cardiologist on Wednesday about a HF nurse.
Thank you so much
You're very welcome. As you say Google does indeed frighten you. When the consultant and doctors stood around my bed and explained that I had heart failure, later I started Googling on my phone asking how long do people with HF live? First hit said 50% survive a year!!! I now know that is total rubbish.
You'll find this forum very helpful, there are some like you and me who are only just starting this journey and still getting out heads around everything, while many others on here have been living with and managing their condition for years and are only too happy to offer the're help and perspective
I know what you. I shed a few tears reading stuff on there. Everyone is helpful and thanks to people like you I feel less lonely.
Thank you
Morning caseyangel
Sorry to hear about your diagnosis which must come as a shock.
I was recently diagnosed with HF and it has taken a while to get my head round what this might mean, its something that can be controlled with medication and lifestyle changes, its also something that can improve and not stop you doing lots of things that you want to do.
This place is really helpful and there is also a great charity called pumping marvellous which has a Facebook group that I would recommend going as you will get lots of Info and support.
Stay strong and ask for help x
Morning
Thank you so much, you have been so helpful.
Thanks again
Xxx
Hello, firstly, there aren’t any silly questions here! If you don’t know then there’ll be someone else that doesn’t either and by asking the question it can only help you and others. You can search on here for Cardiomyopathy and you’ll find people.
My husband was diagnosed with Dilated Cardiomyopathy (DCM) 2 years ago and I remember well what a huge shock it was for both of us. It does settle in time and as tests, medications and reviews happen you’ll find that it becomes “normal”. Perhaps not the same normal as before, but a new normal, one that isn’t bad, just different. My husband’s EF was 10-15% at diagnosis, came up to 25% with meds and he’s now at 40%. He does get fatigued compared with before but he can do much more than we thought he’d be able to. He also had to have his Aortic Valve replaced because it was Bicuspid (with only 2 petals instead of 3, born that way) and no longer working properly due to the DCM.
Have you discovered Cardiomyopathy UK? They have a fantastic website and nurse-run helpline too. Here’s the link:
0800 018 1024
They can pop a comprehensive information pack into the post for free too so you can read or dip in and out of it at your leisure and easily share it with family too if you want.
There’s also lots of info on the BHF website and their helpline nurses are wonderful too.
Is it worth asking your GP practise if any of the GPs specialise in heart conditions and then seeing that GP regularly?
I hope find the information and support you’re seeking soon, including from a GP. Feel to free to shout out on here with questions, queries, rants, winges, responses to others etc as we’re all here for each other.
Best wishes.
I have cardiomyopathy and heart failure too, also an ICD fitted. I have had this since 2010. I felt bit light headed one day while shopping and paramedics sent me to hospital even tho I felt ok. Doctor said it could have been fatal. I had arrhythmia and after tests in local hospital was sent to Papworth. I take Ramapril, Bisoprolol, Amiodorone and aspirin, also Furosomide and Spironalactone (these two as I had alot of fluid build up around my middle). I get out of breath alot of the time when walking but feel fine apart from that. My best friend also had heart attack few years ago and she has heart failure too. "Heart failure' covers many heart issues. We both see a HF nurse every 3 months. My medication is sometimes changed (more/less Ramapril) if needed but usually not. My echos haven't been great but still do almost all I used to do. Sorry to hear you are so worried - it is scarey at first when you are told. This site is great because you know you are not alone. 😀
Thank you so much. It all helps talking to people in the same boat. I was lightheaded all the time, had a couple of falls, headaches and chest pains. My ef is 30%. My dad went into heart failure but he also had cancer, his dad died very young but I guess in them days they did. Everyone is mentioning a HF nurse, I’ll ask my GP or consultant. Google frightened me but I feel more at ease joining this website x
Thanks
My husbands EF is 30 but a cardiologist will tell you not to worry bout numbers as its how you feel that matters. Some people have a high EF but are very symptomatic whereas others have a low EF & have few if any symptons. Once your meds are optimised hopefully you'll notice a difference. Also, being "in heart failure" is not the same as having HF. Being "in HF" is an acute life threatening condition which would require immediate hospitalisation. HF is a chronic condition that is managed by medication & lifestyle, it just basically means the heart needs a bit of help pumping x
just been diagnosed today very sorry to hear your husband also..
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