Learning to life with hf

[Battie]

Hi, my husband was diagnosed with hf in January and since then he has been seeing the heart nurses. They have got him optimised and are now realising him back to the gp. My question is when do you start to learn to live with hf as everyday I’m still watching him like a hawk and can’t get used to this condition. I’m sorry if this is a silly question but I’m really not handling this very well at all.

[Prada47]

Hello pleased to meet you.

In my opinion HF won't cause any sudden problems it is a slow process also accompanied with getting older !! I currently have Moderate HF but have been in Severe HF. I am sure if you are under a Heart Nurse he/she will monitor the condition and adjust meds and increase them if they think it will help. A pacemaker is a mechanical solution in lots of cases so many things to look forward to.

I have accepted that there are things I can't do with HF but still live a very full life. In fact we are just going to have Spag Bol for tea and I am having 2x660ml bottle of San Miguel ( other beers available ) and it's Friday another week completed. This week spoke with Cardiologist and need an MRI but not overly worried been there before !!! It's a kind of Roundabout once the wheel is turning just try to enjoy the ride, not always easy I know but your not alone.

Regards

Stay Safe Stay Well

[Hidden in reply to Prada47]

Wow. You think like me lol 😆. I've had my Heart Problems since the age of 6 and just do not worry about them anymore!! I've done my fair share but don't anymore. What will be will be!! Love that Reply by the way 😀😃

[Battie in reply to Hidden]

Thank you. I do need to chill out a little. I’m just frightened and scared right now. X

[Hidden in reply to Battie]

Aww that's completely natural and understandable. I wasn't trying to underestimate your Anxiety and Worry because I've done it myself too many times and your Post wasn't silly at all. That's ALL I can say, your Hubby have the Heart Nurses to help who I have always found fantastic, take the Tablets and listen to the Professionals. They are worth their 'Weight in Gold'. I have now been Operated on and feel better than I have done in years thanks to the wonderful NHS!! 😀. Look after yourself as well though. Things will be ok!! X

[Battie in reply to Hidden]

Thank you for your kind words. I think he’s a little in denial but I hope we will get there. Thank you again and take care x

[Hidden in reply to Battie]

I know that feeling only too well. Of course you will get there and you are more than welcome. X

[Prada47 in reply to Hidden]

Hello

I must be a Music Lover 4 Ever ideal person. We lived in a town called Starkville in Mississippi, just within a 50 mile radius of Memphis to see Grace Lands and Beale Street. Tupelo was just up the road. and for a weekend we would go down to Bourbon Street in New Orleans. Not forgetting a quick run through the Natchez Trace up to Nashville with a stop off at Chattanooga Station. We couldn't believe this was work lol

regards

[Hidden in reply to Prada47]

So sorry for the late reply. Was busy last night and today I have been Shopping. That sounds absolutely brilliant 😀😃. I would love to go somewhere like that. Maybe one day!! Years ago, we went around the West Coast of America for 3 Weeks. It was great but I was glad to get Home after it. Very, very, tiring but a great experience 😀😃

[Skertchly in reply to Prada47]

Going to Natchez when virus allows. My friend is from there.

[Battie in reply to Prada47]

Thank you for your reply. It’s very hard for me but I’m sure I will get there. My husband is a very private man and doesn’t really talk about it which doesn’t help me. You stay safe and take care x

[Hidden]

Hi Battie, I've always felt that it's harder for wives, husbands etc, than for the patients, well in my case that's the way I see it.

My wife has been the strength and glue to get me/us to where we are now. She has had the burden of looking after me and to this day still worries about the slightest thing.

For me, it's straightforward, I just get ill, fixed and get on with it, whereas she has to deal with it.

You're husband may tell you everything, he may not, but I suspect you won't stop worrying either way, and you're certainly not being silly.

Best wishes

Heed

[Battie in reply to Hidden]

Thank you for your reply. Hubby just gets on with it but I’m the worrier. He is doing ok but could do better but one step at a time. I agree that it’s hard for the other half’s and sometimes we need a little support. Many thanks for replying

[Shar28]

Hello Battie, I’m the wife of a heartie too and completely understand your worry as I’m also rather like that. It gets easier over time but in my experience hasn’t completely gone away in the 4 years since my husband’s diagnosis. Have you thought about having some counselling to help you deal with this situation? I found it helpful and most of the time it fades into the background now.

Best wishes to you and your loved ones.

[Battie in reply to Shar28]

Hi thank you. I haven’t tried the councillor but I may go down that road. Thank you x

[Weeps24 in reply to Battie]

HiI feel the same as you, living on my nerves and wondering if it will ever ease. My partner was diagnosed with heart failure only four weeks ago, although he had an echocardiogram in April we have only found out the results four weeks ago. It is a big shock and so scarey. My husband seems to be handling it a lot better than me. I am so anxious all the time and can't seem to relax!! Just wanted to say that you are not alone with your feelings ❤️

[Battie in reply to Weeps24]

Hi it is hard. My husband just gets on with it but like I say I’m struggling. If I’m totally honest whilst we are eating a lot healthy in other areas he is still over doing it ( he likes a tipple). We stopped smoking years ago but he infuriates me. Thank you for your reply and we gave to put positive pants on. Take care

[Weeps24 in reply to Battie]

It is so hard. Although we try to eat healthier too my partner has a terrible sweet tooth!! He gave up smoking about 6 months ago but has copd also. We are waiting for an angiogram as it is thought he has coronary artery disease causing his heart failure. I am worried about what that will show 😱. We ended up having to see a private consultant just to get the results from nhs echocardiogram. Now we are waiting for heart failure nurses to get in touch. I am hoping to feel better when we speak to them. It's great to hear people's positive stories on here. Have you thought of joining pumping marvellous fb page? ❤️

[Battie in reply to Weeps24]

Hi it is very hard. Yes I’m on the pm website. If I’m been honest I’m frightened to post anything as I don’t want to offend anyone as my husband should be doing a more to help himself. Head in sand seems to spring to mind. The nurses are great and have really helped. I hope you get your appointment soon. Take care and thanks for your reply.

[Weeps24 in reply to Battie]

I wouldn't worry about offending anyone, but even if you don't post anything it's great for information etc. I am sure my partner could do more too. It is all a shock and everyone deals with things differently. I just go into panic mode and really struggle. I am happy to chat anytime x

[Battie in reply to Weeps24]

Yes it is great for information. I’m here for a chat or rant as well. Sometimes it’s a lonely place but I’m sure not everyone sticks to the rules. I also panic and get really angry with him. Thank you for listening x

[purpleswimmer]

Hi. It is not a quick fix and takes time to adjust your lifestyle accordingly. I think we forget how much it effects wives/husbands/partners as well as the patient. On my case I did all/ most of the cooking/cleaning/shopping/gardening but suddenly was unable to do these tasks so my wife had to learn a whole lot of new skills but alongside that her fear for my health became apparent and she fussed over me like a mother hen and panicked if I took dog out on my own and did not come back when expected etc. This in turn drove me mad at times so imagine my recent disgust at her not only 'allowing' me to do tasks but actually asking me to do some things!! What it made me realise was that we are adjusting to our new normal and getting on with life. We are near two years down the road if hf. a fib and a variety of other ailments that appear to co e with the territory. Good luck. Xx

[Battie in reply to purpleswimmer]

Thank you. I know I drive him mad but it’s only because he’s my husband. We will adjust and hopefully that will become the norm. Wishing you all the best

[Bandstand]

Hi Battie, I read your message and it v much echoed my own worries in recent months too. Over time I have come to live with mum’s heart condition but of course still worry and get upset / anxious at times however most of the time she gets on with life as best she can which is an inspiration to me. The community heart team have been amazing and without them I am sure she would have been back in hospital. They have adjusted her diuretics to relieve stuff like fluid retention and we seem to have found a balance for now. My only advice - which I try to remember myself & I do forget (!) - is to enjoy and be thankful for each good day and make the most of the present We have had some wonderful quality times with mum which may not have happened had her health been otherwise All the best to you.

[Battie in reply to Bandstand]

Hi I’m so pleased your mam is been looked after and yes we must treasure every day. Kind regards x

[Dundeeman27]

Hello Battie, - I had a nasty heart attck 18 years ago which left me without my circumflex artery. Having attended clinics for two years I recovered eventually to be able to do most things including climbiming a Munroe but no football or cricket etc just golf. 7 years ago the loss of an artery took its toll and I was diagnosed with HF which clipped my wings a bit but still had a reasonable quality of life. 18 months ago, after a driving black out which caused a crash, I was fitted with a new high-tech pace maker and drugs further optomised, and although I now get bad fatigue my only real HF sympton, I am reasonably active e.g. golf on flattish courses and short walks. I am now 73 so chin up as HF is not always the end of the world

[Battie]

Thank you. We have to make changes and adapt. X

[Glynnw]

Its the sudden change from we call ‘normal life’ i.e just going about our everyday business when one day we begin to notice changes. Changes that get worse over the coming weeks or months. Then were diagnosed with HF. Its a horrible position to face.However in most cases with the intervention of modern drugs etc we improve. Improve to a level whereby according to test results etc we appear to be sort of OK. Truth is, were not actually OK , more managing it getting used to our ‘new us’. But at the same time were much better that what we was at the diagnosis stage.

My wife like you had been my rock, without her I wouldnt have coped as well.

I believe its a life long condition but one that can be well controlled.

I had an appointent with my cardiologist a few weeks ago, he told me I can now eat & drink whatever I want. There is life with heart failure it seems.

The words Heart Failure needs changing, ut makes our condition sound dire.

[Battie in reply to Glynnw]

Hi, definitely with you on the change of name as it sounds awful. Anything but the word failure. We haven’t seen the cardiologist yet but the nurses have been fantastic and he is now optimised with the meds. It can be controlled so we just have to adjust. Many thanks for replying and take care.

[GracieOS]

Hi Battie, I was diagnosed with severe heart failure three years ago. It’s really scary. I found it difficult to talk about at first even with my husband. So he may need time to come to terms with it in his own head. What I would definitely say is my worst fears have NOT been released. My heart failure is now very mild. I live a very full and active life. Some positives even came out of it. I took stock of what was and wasn’t important and made life decisions accordingly. I took early retirement and I’m currently travelling around Europe in our camper van with my husband.

It takes time to get the medication right for each individual so expect things to be tweaked and changed. But once sorted the medication can work really well. I made some lifestyle changes but not huge ones. I still enjoy a glass of wine in the evening.

My key message really is that life can still be good, the initial anxiety will fade as you get used to your new situation. That’s not to say you won’t worry but that it will become more manageable.

I wrote a long post recently about my experience. Good luck.

[Battie in reply to GracieOS]

Thank you for your reply. Hubby is doing ok and yes his meds have really helped. He could possibly trying to understand it himself and his attitude is “just get on with it” he is a positive person usually. I think one step at a time. Thank you again.

[SLK-14]

Hi Battie...Just thought I would drop you a line. I was diagnosed with Severe Left Ventricular Systolic dysfunction Ejection Fracture of < 25 in March this year. This came out of the blue after experiencing many Ectopic Beats.I have now been I'm my medication for 7months and have just had an Echocardiogram, the results now are my LVSD is now moderately severe and my Ejection Fracture has improved to between 35/40.

It is so very tough and there are good days and bad days, but there is hope. I hope this helps ...take care and stay safe...

[Battie in reply to SLK-14]

Thank you for your reply. Take care

[Weeps24 in reply to Battie]

HiI was just wondering how you are doing ❤️

[Battie in reply to Weeps24]

Hi I’m ok thanks and I hope you are to. Hubby just come out of hospital after having a cardio version ( hope that’s the right name) where they shock your heart back into rhythm. It has worked so that’s good. Some days better than others but you have to carry on.

[Weeps24 in reply to Battie]

That is a bit of good news 👍. Yes some days are better than others but my worrying never seems better. Partner had cardiac rehab yesterday, just a bit of walking and monitoring etc. I think any more appts with them are going to be phone calls. He also has an appt for 24 hour heart monitor next week!! Yes all we can do is carry on. X

[cavalover]

I’ve had HF for 2 years as well. It’s hard living with it. The fear of being so ill again never leaves me, for all my wonderful cardiologist keeps encouraging me to forget. These days I feel as well as I did before it all began so I do try to forget and do everything I used to do. But it is hard. I suppose it’s a case of just keep trying.