A year into heart failure

[Jamie27]

Well this is my first post in a long time! It’s been just over a year since I got diagnosed with my condition.... I’m moderate/server with a dilated heart (bit large) had my angiogram which showed this but no signs of any significant damage etc just that it was and I quote a little dilated.... I’m hoping that’s better news as my cardiologist does not want to see me for another 6 months and just to keep in touch with my heart failure team! My ef was 35% when I started and now take 3 meds a day espelornone or however you spell it haha

Bisoprosol and ramipril.... I have my good days and extremely difficult days we’re I get bad chest pains but use a hot water bottle and pain killers to try stem the pain! If anybody else has the same sort of symptoms it would be great to hear back off you!

[lettingoffsteam]

Good to hear from you Jamie, I remember you posting last year.I'm glad you've had some encouraging news and hope that you make even more progress very soon.

[Jamie27]

I’m just hoping my EF might have gone up over the last year that’s what I’m hoping anyway.... erm there’s been no mention of an ICD by my cardiologist etc so I’m not quite sure.... I’ve basically been told that my heart is just dilated and that’s all nothing wrong with the valves no signs of any blockages etc all clear apart from that.... I’ve been eating a lot better the last few months as I’d gained weight but now dropped over a stone so that’s helping too!

[Jamie27]

Hmmm yeah I never had anything mentioned about that? Either that or their possibly hoping it will rise before it comes to that I’m not sure? Definitely something to ask my specialist next time! Thanks for that!

[Thanksnhs]

Hi my old ticker is done, I have dilated cardiomyopathy and heart failure, but I have never had pains like you describe, the last letter I seen my ef was 23 I think it's worse now but still no pain, could something else be causing it as opposed to your heart, I was taken off ramipril and put on entresto which at the lowest dose was fine, I have an icd which did fire once, I didn't even no till the hospital phoned, downside of that was I lost my driving licence for 6 months, upside I am still here to tell the tale 😀I would mabe badger my gp about the pain, it sounds quite severe char

[Jamie27 in reply to Thanksnhs]

Yeah I’ve had the chest pains on and off for say nearly 3 years now! They also believe it to be something else other than my heart as it sounds more muscular pain! Always on the left side of my chest which is the worrying thing but they assured me it’s not my heart as when I press down on my chest it helps the pains also using a hot water bottle etc.... just a strange one? Il speak with my gp about the icd cause at the moment they said they aren’t looking at any operations etc so I’m not quite sure what’s going on haha! I’ve only seen my cardiologist once in person and once over the phone in the last year and had my angiogram around 6-7 months ago

[Thanksnhs in reply to Jamie27]

Keep us posted how you get on, especially about the pain I have a frozen shoulder and the pain from that is much worse than my heart issues, but there is nothing they can do about it unfortunately, not seeing your cardiologist could be seen as a good thing, that things are stable at the moment, but I know reasurence is necessary as well, I used to see mine every six weeks and a heart failure nurse in between I should have guessed something serious was going on, I think I just buried my head in the sand!

[Jamie27 in reply to Thanksnhs]

I shall keep you updated! Yeah they think the muscle around my ribs could be enflamed but with how long it’s gone on for it’s just a bit strange... anyway I’m hoping it’s all good news that he doesn’t want to see me as often I see my heart failure nurse once every 6 weeks 😊 I’m going to see if I can push through getting another angiogram or echo soon to see if my ef has increased

[Thanksnhs in reply to Jamie27]

Good idea if anything it is the reasurence that comes with it, I hope you get one soon, now that things have started back up again, thank goodness

[Cornwallyoungheart]

Ramipril is an interesting one. Getting it reviewed for myself tomorrow. Since being on it I’m far more lethargic (Yet find it harder to sleep) and my appetite has gone downhill.

[Jamie27 in reply to Cornwallyoungheart]

Yeah I’ve been on ramipril since my diagnosis and I’ve not really noticed much difference.... some days I do feel tired but I do sleep normally at night sometimes with a hot water bottle on my chest to prevent the pains

[Mickymoo]

Hi jamie, i had a cardiac mri which showed slight heart enlargement with fibrosis on it. My ejection fraction is normal. Can i ask what explaination (if any) they gave you for the heart to enlarge? Im told i have heart failure but as yet no cause. Last told of mri then next appointment in march cancelled with covid. Any advice? X

[Jamie27 in reply to Mickymoo]

Hi, they told me they think it was from a virus I might of had! My EF was 35% at my first and last eco over a year ago! I am due another one I believe some time in the next few months to see if there’s been any sign of improvement!

[Mickymoo in reply to Jamie27]

Hopefully you get another doon then. Your probably chomping at the bit to know. This is no good, most appointments cancelled or put on back burner! I know my anxiety is sky high waiting to see cardiologist again. Did they give you any medication for heart enlargement? I have furusomide as i retain a lot of fluid but thats it so far. Cardiologist seems a bit stumped in my case lol. X

[Jamie27 in reply to Mickymoo]

Yeah I am on ramipril bisorapsol and epenlerone or however you spell it haha! Just try keep yourself calm I was horrendous for the first couple of months always panicking myself but people deal with it In different ways

[Scoopdogg]

I’m only 2 months in from h/f 10% ef - I’m having chest pains regular on my left and also a sort of burning sensation toward my armpit , the h/f nurse didn’t seem concerned!

[Jamie27 in reply to Scoopdogg]

Yeah I get the chest pains pretty much every other day! My heart failure nurse and cardiologist said they are not worried about it also.... but some days are worse than others

[Scoopdogg in reply to Jamie27]

Other than that Jamie how long did it take to get some kind of normality? Did you get back to work ?

[Jamie27 in reply to Scoopdogg]

I’ve been working through out! I’m office based so it’s quiet easy going! I’d say it probably took around 3-4 months before I started to come to terms with things

[Scoopdogg in reply to Jamie27]

That’s helpful to know thanks - I do a lot of driving and staying away from home / I’m worried about that

[Jamie27 in reply to Scoopdogg]

Yeah there’s times when I’m home alone and it sits on my mind that something will happen but I just deal with it in different ways like il play a game on my phone or try and read something to distract myself

[Scoopdogg in reply to Jamie27]

I’m very much a fight through it type of person so having to hold back a little for now but feeling positive - what’s the worst that can happen ?? Lol

[Jamie27 in reply to Scoopdogg]

Exactly! Just gotta keep the brave face on

[MrsK82]

Hi Jamie - just a thought re the pains. Could it be back pain referring through to your chest?

[Jamie27 in reply to MrsK82]

I’ve never thought of that! I do get lower back pain a lot

[MrsK82 in reply to Jamie27]

Maybe it is then...if you are allowed any anti-inflammatories it may be worth trying? Back pain can affect so much.

[Yasyass]

I was diagnosed since Jan with hf stage one and said I have severe heart damage haven’t heard from my cardio since March but at th time said will see me in sept to discuss a icd I started taking rampiril since Jan I’m hoping I’ve improved my ef which is 31 I feel fine and hf nurse hasn’t got in touch with me either I’m just doing my best eating well and going for walks hoping that everything will be ok