I had some health checks and an ECG showed LBBB I was sent for an echo in June just to double check things. This came back with left ventricular dysfunction and EF 35%. Ventricular ectopy was 7-8% couldn't believe it when I was told I have HF. Seemingly no symptoms I thought, however I did get palpations and some light headedness which I put down to the fact I had low blood pressure and had quite alot of stress so maybe some anxiety. Other than that fit and healthy, lots of walking, swimming 3 times a week and gym twice a week.
I have been put on a low dose of Ramipril 1.25mg in morning and 2.5mg in the evening and 1.25mg of Bisoprolol the Dr reluctant to do much more as my blood pressure low so its the slowly slowly approach. I had my CT with contrast in July which showed no evidence of coronary artery disease which is good news but still no answer.
I had an MRI yesterday hoping that will shed some light. What I find disconcerting is twice now I have been told that the echo isn't always accurate as far as the EF goes. So does this mean if my EF comes back at a higher % I will no longer have HF? - getting clarity on these things is a nightmare it doesn't fill me with any confidence.
Since taking the meds I have felt worse not better and seem to have a permanent annoying cough. Waiting list to see consultant is ridiculous so in the meantime appear to be bounced between Heart Failure nursing team and Doctor who seem to have conflicting ideas and all on summer holidays.
I am probably in denial but I am wondering if the diagnosis is right or not, I guess the results of MRI will show that.
Is this normal to feel like this about a diagnosis just doesn't feel real.
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I’m so sorry to hear about you diagnosis but glad you are here! I’ve recieved so much good advice and met the nicest people on here.
Reading your story really resonates with me it’s very similar. I went for a routine ECG in April and discovered LBBB then had an echo scan which showed server left ventricular disfuntion. This was also diagnosed in June waiting on a cardiac MRI most of this year I’ve felt ill but like you put it down to daily stresses , anxiety etc and the diagnosis absolutely floored me ! I haven’t been able to work , really do anything and similarly im on
Ramipril , eplerenone, dapaglifozin and bisoprolol I wanted to let you know I too felt worse before better . The doctors gradually move you up titration in 8 weeks into the meds and feeling much better so there is hope for you . I also found the british heart foundation helpline was amazing the have real HF nurses who are just fabulous and give lots of amazing advice and support do use this is you are waiting for consultant and or heart failure nurse . I can’t tell you how helpful they were 0808 802 1234
My ejection fraction was 25/30 I’m hoping it might have improved .
Being on this forum has really helped me and please read my post and the amazing stories people shared for me who are further into there journey . Inspirational and there is hope .
We sound like we are at a similar stage if you need a friend or to talk I am hear don’t suffer in silence . So glad you are here you will meet some wonderful people
Thank you for your reply, the forum is amazing giving such great support and advice. I will be seeing the doctor later this week hopefully with results of MRI so maybe a better idea of what's going to happen going forward.
The waiting list for MRI's is so long, I am fortunate that I had some savings so used that to pay for a private scan, hoping it will give a clearer picture and reduce some of the anxiety that goes with the diagnosis.
I will call the BHF nurses today really appreciate that advice. Hope you are doing ok, let me know how you get on. Likewise if you need to chat I will be here.
Nice to hear from you, great news about your MRI not too long too wait. Are you having the stress test?
Luckily the consultant got my CT scan so had contrast but not the stress test. Scan was just shy of an hour and was ok but exhausting- hope you are good at holding your breath. I slept well that night. You will be fine nothing to worry about spend most of time listening to breathing instructions so goes quite quickly.
Bhf nurses were brilliant and definitely eased my anxiety generally.
Results from MRI were ok. Have LBBB cardiomyopathy and eptopics still even though on beta blockers, and something to do with papillary’s being small/not properly formed or something can’t quite remember.
From Monday starting the low dose of Entresto then when I come back from holiday 16th September he is going to start me on the diuretics dapagliflozin and another one dreading taking those. Just got to keep an eye on blood pressure and weight as already have low pressure it’s struggling passed 89 this week 😬.
My ef has gone from 35 to 40 so thats a positive sign.
How are you doing? Hope your ok do let me know how you get on.
So glad to hear this and that the EF has improved !! I’m on Daplagfoxin also and it’s been wonderful are you diabetic ? My HBA after not moving for years has improved by 30% so don’t worry
I hear so much good about Entresto I’m going to ask about it in my follow up !
How are you feeling in yourself ?? Has it sunk in abit more the first few months were terrible for me but do get better .
I’m on Sertraline as I’ve found myself depressed and anxious but not just about HF also my mum has Alzheimer’s so far this year has been pretty crappy!! But we carry on!
Amazing that your EF has improved in such a short time that’s great and hopefully improve any symptoms. Have you been having symptoms?
Mine have been breathlessness, dizzy and exhausted but some improvements in both , considering how many pills I’m on I’m rattling !! 😂
Have you got some family and friends supporting you
I’ve been reading about the MRI yes I’m having stress tests, it’s such mixed emotions I’m hopeful , then nervous , then terrified lol I’m always hopeful for some positives
The good thing about the MRI it gives you the most accurate EF % so fingers crossed for you 🤞 The stress test lasts 4 minutes the nurse told me.
Sort of got my head around things its just difficult to reconcile when you have been such a fit active person, not a diabetic. Have found these meds have slowed me right down so that is frustrating. I started the Entresto yesterday morning today I feel quite rough had big drop in blood pressure 82/60 and a bad stomach. Hoping the side affects pass as my body gets used to it. Still getting palpitations and feel tired. I use an Omron blood pressure machine which detects irregular heartbeat whilst doing your blood pressure, I am finding the evenings is when the irregular heartbeat shows up. Probably as I am on low dose of Bisoprolol in the mornings only.
Sorry to hear about you mum, my step mum has Alzheimer's I was looking after her on Saturday to give my dad a break, not easy as she is quite advanced. Must be a very difficult time for you, its an awful disease and so difficult when it is someone so close.
Don't know how my dad does it every day he is 85 and he suffers from AF. My brother (he was 56) passed away May 2020 he had a heart attack during the early hours he wouldn't have known anything about it thank goodness. He had an enlarged heart and a mitral regurgitation, he had mental health problems I cared for him but he rarely took the meds he was supposed to even though I sorted them in his dosette boxes.
I am grateful that mine has been pick up, ignorance isn't always bliss even if we don't like the diagnosis so taking the positives out of it all.
Let me know how you get on, I will update you how I am getting on with Entresto
How are you doing lovely? How’s things on the Entresto . 17 days till my MRI and literally counting the days!
Yes a tummy bug is definitely what you don’t need on top of everything; how are you feeling now ?
I’ve had mum here this weekend which has been nice but tiring doc gave me some sleeping tablets Zoplicline haven’t half felt druggy!
Sorry to hear about your brother and I agree we are , I guess , the lucky ones because we know and are having treatment etc . I lost dad very suddenly also.
My HF nurse thinks the cardiologist will give me the IDC box (or is it ICD)
After an initial uplift with meds I feel like im slowing progress don’t know it’s strange at the moment feel quite different from one day to the next !
Did they tell you how long it would be before you got your results.
Just started Dapagliflozin this week, Dr will increase the Entresto in a month and I guess get the other diuretic at some point. Not sure what the new table I have started is supposed to do really but not noticed anything different so that must be a good thing.
Anyway let me know how you got on and how you are doing.
Wow what a week! Boiler broke on Monday , MRI Wednesday, locked myself out yesterday ! It’s been one of those weeks! Never felt more like a large GnT!
To be honest …. I hated every second of the MRI and it went on so long but got through it ! The team at blackpool so lovely just got through it with humour but must admit found it quite traumatic !!
Not sure on result times but my cardiologist will see me as soon as results are in! How long were your results ?
I know what you mean about low blood pressure I’ve just had an increase of Bisoprolol on Tuesday I felt like I was literally on a boat was horrible. It’s a balancing act isn’t it . I’m going to ask about Entresto when I next go.
Otherwise I’m ok just been a really stressful week . How’ve you been and feeling ? I’ve had a really good experience with Dapaglofloxin it’s the only thing that has lowered my HBA in 2 years so that was good .
What a week you had! The Cardiac MRI is traumatic but the nurses are great so that helps to ease the anxiety.
Due to the wait for the MRI on NHS I was lucky enough to get mine done privately and got the results back within a week.
Although the doctor said not to worry about the Consultant Cardiology appointment I have made one for October if I wait for NHS appointment it will be next year sometime. I chased my appointment with NHS and even though I was referred in May it still has not been triaged 🤷♀️its crazy the waiting times just adds to the anxiety you have already being given the diagnosis in the first place. I just want to tick all the boxes see who I need to see and get on with things half the time its like the sword of damocles hanging over you.
You said the Dapaglofloxin lowered your HBA - excuse my ignorance what is HBA?
Do you understand what it actually does the Dapaglofloxin I don't really, when I see the doctor I hear the words but don't always come out with it fully registered in my head.
I have been ok, but feeling quite tired all the time I am sure it's the mixture of the meds. I saw my parents at the weekend and looked after my mum for a couple of hours, her dementia seems to be advancing fairly swiftly, I guess that's due to age also as she is 82, I really struggled I felt so exhausted after.
Hope you have a better week this week, make sure you keep chasing for results hopefully you will hear in the next week or two.
The Entresto just really lowering my already low blood pressure so making me feel a bit weird at times but stomach appears to have settled. Had a blood test yesterday hopefully get results before Friday hoping potassium ok as going to North Devon for a week on Friday.
Blimey your taking a strong sleeping tablet 😬my brother used to take those along with lots of other meds. My doctor gave me melatonin but I have only had two didn't like how they made me feel, not only that I get up at 4.30am three times a week to go swimming so no good for me, so used to not a lot of sleep now anyway.
That's funny the HF nurse said the same to me, not unduly worried at the moment I think the meds will be maintained for quite a while before that is considered, that's something the Consultant will decide on I guess once all tests etc are done 🤷♀️
I don't see the HF nurse now, lucky me doctor is literally 5 mins from where I live and is brilliant. He has a special interest in Cardiology so is very knowledgeable and helpful, HF nurse was lovely but really didn't feel the need for both nurse and Doctor
I am with you on meds, some days feeling really good and got a lot of energy other days not so much and just feel a bit crappy hoping that it will level out at some point.
Only two weeks until your MRI that will go quickly, with the best will in the world you will be a bit anxious but once it's done at least you will hopefully get a clear picture of how things are. Fingers crossed your EF will have improved with all the meds, I found the waiting for the results drove me mad you just wanted to know.
Seeing doctor on the 16th to get next set of tablets the diuretics hoping they don't lower BP anymore.
Hope you don't get too anxious in the build up to your MRI always at the end of the email if you need t chat.
Sorry for delay replying I have been away, lovely to hear from you.
I agree the MRI is awful not something you want to repeat too often! Good you have got your results, I am assuming they can medicate for hypotension, thank goodness the arteries are clear 👍Brilliant that your EF has increased as well 🤗
I saw the consultant a few weeks ago, he said the ventricular ectopic beats and LBBB is worsening cardiac function, added to which I have dilated cardiomyopathy 😬 so he wants to ramp the meds up to optimal or as much as I can tolerate the will have another holter ECG along with echocardiogram to decide if I will have an ablation or pacemaker.
My doctor agreed to increase the beta blockers but not by much so still get ectopic's by late afternoon through the evening. Doctor said he did not see need to increase Entresto but he hadn't had letter from consultant. Seeing doctor in a couple of weeks (14th November) I am going to push to increase meds because that's a better option than the alternative surely.
Let me know how you get on when you go on the 12th, hopefully you will have a better understanding once it's all explained.
Hope you enjoyed your holiday and got some R&R ? Where have you been
To be honest I think I also have some of listed conditions but honestly I couldn’t make head nor tail of his letter it was such medical jargon and I learnt the hard way to avoid googling them!!
Glad to hear that things are moving on with treatment plan for us both .
I got the date wrong it’s 19th I’m meeting him don’t know why I said 12th looking forward to having some answers
Otherwise trying to chill ! Thinking about starting some easy home work as my brain is turning to mush lol I’ve worked full time since 16 and now aged 43 I’m not used to doing nothing
Do you still work or did you have to stop also ?
Sounds like this year has been tough on us both but looking forward to a nice Xmas with my folks! Forget about all this for a week or two it’s all consuming isn’t it
We just went to Dorset my dog loves it there. I still work haven't actually taken a day off to be honest. But I work from home anyway which makes live easier have done for years. Still do my swimming 3 times a week and gym twice a week, I think that was my salvation being quite fit. Obviously more thoughtful with what I do, but would drive myself crazy not doing anything.
Bar feeling more tired with the medications not feeling to bad at all. Lets hope we both get all our answers this side of Christmas and next year won't feel quite so tough.
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