Hi, I've just turned 40 and was diagnosed back in February with no known cause. My EF was 15 and I am now on the highest doses of meds available including Entresto, Bisoprolol, Dapagliflozin, Furosemide and Spironolactone. I had a review echocardiogram 2 weeks ago and despite maximum dose my EF is still 15. I'm therefore being referred for ICD and my consultant mentioned a transplant if necessary. I'm scared, annoyed, sad and anxious all of the time. I'm a social worker, I love my job and don't want to stop. I heard ill lose my license temporarily after the implant and I don't know what that will mean for me. This diagnosis came completely out of the blue, I'm breathless and exhausted all the time and I'm just generally struggling to agree with people around me who say I need to be thankful they found it, I'm not there at the moment and am so disappointed there's no improvement at all despite the high dosage.
New diagnosis of HF and Cardiomyopathy - British Heart Fou...
New diagnosis of HF and Cardiomyopathy
I know exactly how you feel! I was diagnosed out the blue. I'm a little older than you, so I decided to give up my teaching job as it was so stressful anyway. I've just been told I need an icd and I'm so scared.
Hey. 3 years ago I was diagnosed with dilated cardiomyopathy with an EF 10-15%. I underwent lots of tests/procedures. I had my ICD fitted the same year, only had to stop driving for one month as it was fitted as a preventive. I had appointments and investigations with the transplant team. I have struggled with medication as my body rejects most of it. 3 years on I have been signed off from the transplant team and my EF is now 25%. I haven't worked since my diagnosis but this is at the request of my consultant, I know others are different and still work. It's scary and I still have issues but I noticed improvements. It took me 2 years to overcome the dizziness and I still struggle with tiredness at times. Hope this helps a little x
It’s a shock isn’t it?
The other responses are so well written, but i wanted to reach out to you
3yrs down the line of heart failure ( completely out the blue) I still have waves of feeling completely scared, anxious and angry. But not the totally overwhelming emotions I experienced at the start of this journey.
As a senior nurse I ended up in the emergency area where I worked - 10 days later left hospital totally shell shocked at my diagnosis. my union was helpful re work, I eventually avoided talking about heart failure to well meaning friends and family who are unable to comprehend the impact of this diagnosis.
It appears that for many medication can take time to work …if possible try to get some help with chores so your energy can be used for stress management (? Meditation perhaps) or things which can help the emotional journey. The BHF help line or Pumping marvellous site were / are an amazing source of support. Others report heart failure nurses helpful, although mine sadly lacked any warmth or psychological insight ( rare in HF nurses)
Please let us know how you are, as and when you can.
Hello there. I was 49 in Oct 2022 when I was diagnosed with severe heart failure out of the blue after suffering the exact same symptoms as yourself. I've always kept fit and weight train 4-5 tines a week, so couldn't believe my diagnosis. I had an EF of 10% and was fitted with an ICD a few weeks after. They advised me at the time that the meds often take several months to several years to see an improvement, so with that expectation, I just carried on and hoped foe the best. 9 months after, my EF was 45-50. Luckily I haven't had any HF symptoms since and I am bow working full time and back weight training and living a fairly normal life. It can happen, but patience and taking the meds is the key to help us avoid a transplant hopefully.I wasn’t allowed to drive for a month after my ICD implant because it was fitted just as a precaution; but that time goes so quickly.
Please feel free to ask me any questions, as I have been in a similar position to you 🤗
Hi sparkleandshine
I'm very sorry to hear of your diagnosis, it is very scary & overwhelming when you're given that sort of news.
Unfortunately medication doesn't always work for everyone but when it does it can take it's time to work. To me it sounds like you're being referred for an ICD as a precaution to give your heart a bit more time to adjust to the meds before going down the transplant route. My husband has his first ICD fitted in 2012 & he's now on 2nd one. The thought of having a ICD is scary & alien but in fact it's a life saving device and that is monitoring your heart 24/7 & will immediately notify the hospital if theres a problem. Usually it's only a 1 month no driving if it's fitted as a precaution rather than because of an event.
Someone has already suggested looking at the pumping marvellous website, I second that. They are the UK's leading HF charity endorsed by cardiologists & nurses in the UK & worldwide, you may have already been given some of their leaflets on HF when you were diagnosed. They also have a very well moderated support group on FB which I'd suggest joining, lots of advice and support from people who have or are caring for people who HF and who have been or are dealing with the same news & issues.
Also the BHF nurse on this site are incredibly helpful, I've phoned them a couple of times for advice.
I assume you've been allocated a HF nurse, if not then ask your GP why not & ask for an immediate referral. Under NICE guidelines you should be referred to a HF nurse who will monitor your condition, adjust meds etc alongside your consultant.
Good luck, please keep in touch and let us know how you're getting on
Some people improve slower than others, and its only been 5 months since the diagnoses. A ICD will give you peace of mind incase of a SCA, and its a fairly easy surgery. Try to follow Drs. orders, watch your salt and ask about cardiac rehab. I was stuck at 10-15% for 7 months and went to see a HF specialist who, unlike my regular Cardiologist upped all my meds slowly and because of my LBBB, inplanted a CRT-D. Within 5 months I was improving. If need be, seek a second opinion. Take care
hi,I have had the same experience as you,I’m on a lot of various drugs,I’ve had a cardioversion and recently an ICD.I am more breathless and worn out than I was a year when first diagnosed,despite all of the drugs I take.
This gets me down a lot as I am fed up of having no energy and constantly tired.I can’t go far from the house due to breathlessness and certainly can’t have a day out somewhere.
HF and pacemaker
HF improvement 
HF r EF HF p EF 
HF Going in the Right Direction
Recently diagnosed with HF. 
