LVSD ....: I need a group hug... - British Heart Fou...

British Heart Foundation

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LVSD ....

SLK-14 profile image

I need a group hug......struggling to cope today...not with symptoms but with my mind. Why do some days feel so bleak..

58 Replies

It's really hard sometimes isn't it. No matter what our experience or diagnosis, we all feel the same, in that our lives have changed forever and we will never be the person we were!! Sometimes that's a lot to get your head around. I had a HA on 17th April and it has changed everything. I thought I was healthy before and was living a happy carefree life, then I had a heart attack!!! I stopped smoking immediately, and I really enjoyed smoking!!! Ive cut out alcohol too!!! Overhauled my diet and I'm trying to get a wee bit fitter. Some days are better than others , but sometimes I really resent my life being turned upside down!!?? What keeps me going is the fact I'm alive and my heart is not diseased, I just had to have some plaque cleaned out an artery and a stent put in!!! Im very lucky and I know that and I'm very blessed too. Just put today down to a bad day and hopefully tomorrow will.be better for you

SLK-14 profile image
SLK-14 in reply to Doora

Hi DooraThank you for reply...I know my LVSD is not curable and will begin to deteriorate. I know I'm not supposed to accept the five year target but I keep wondering how soon I will not be able to live my life as I know it.....sorry I feel a bit pathetic.....

Doora profile image
Doora in reply to SLK-14

Your not pathetic at all!!!! youve had an awful shock, and a diagnosis that is very difficult to accept and come to terms with.

SLK-14 profile image
SLK-14 in reply to Doora

Thanks Doora.....I wish you all the very best....

P0rtnahapp1e profile image
P0rtnahapp1e in reply to Doora

So, the changes you made in your lifestyle because of the warning have probably extended your life! That’s a positive. You are really lucky!

SLK-14 profile image
SLK-14 in reply to P0rtnahapp1e

Hi P0naapp1e...yes I know there are so many much worse than me...I will try to be more positive....take care...

P0rtnahapp1e profile image
P0rtnahapp1e in reply to SLK-14

I’m so sorry SLK-14, I thought I was replying to Doora! 🙈

That must have sounded so unsympathetic!

I agree that we have down days, unless we are superhuman I reckon everyone does, whether I’ll or not.

I had a setback last Thursday and spent some time in hospital. I was a bit gloomy since then but this morning I’m back to being positive, (although I’ll have to apologise to my family for being snappy and tearful for a couple of days).

We’ve all come through an awful lot in the past year which magnifies our problems. I’m just amazed that we aren’t a lot worse emotionally.

All the very best and hope things go well. X

SLK-14 profile image
SLK-14 in reply to P0rtnahapp1e

Hi P0ortnahapp1e...That's no problem...lol...wishing you all the very best too xx

Exie8 profile image
Exie8 in reply to Doora

*sends big hug*

SLK-14 profile image
SLK-14 in reply to Exie8

Fankoo Exie8 😊

nursenancy53 profile image
nursenancy53 in reply to Doora

Hi Doors - feel for you about the cigs - I am off them 3 years on 1st August - wish I could say it gets easier but I still miss them most days - good luck x

Doora profile image
Doora in reply to nursenancy53

Hi,Just had my review today with cardio rehab team and its all really good positive news. Although i resent having had a heart attack, I know that I would never have taken stock of my lifestyle if I hadnt had one!!! I really don't miss cigarettes at all!! Ive stopped drinking, and ive overhauled my diet too. Just need to get pain management under control for historical health issues. Baby steps, one day at a time.

When you have been told your body is not doing 100% what it should, it is a real shock. I think most of us in this group have been there. It is a perfectly natural reaction, but remember treatments are improving all the time, and people are living for many years with a diagnosis that would have been fatal not so long ago. Consider yourself hugged in spirit, if not in person.

SLK-14 profile image
SLK-14 in reply to RufusScamp

Fankoo Rufus....hug making me feel better 😊

RufusScamp profile image
RufusScamp in reply to SLK-14

Glad to hear it. That helps me too.

SLK-14 profile image
SLK-14 in reply to RufusScamp

😊😊

Hugs you hard ‘ virtually ‘ hope you feel a bit more yourself soon.

SLK-14 profile image
SLK-14 in reply to Notdead

Hello Notdead......fankoo...being on here gives so much support 😊

Hi slk-14. Although I have no experience of your particular illness, I just wanted to send a gentle virtual hug to a fellow heartie. Bad days are difficult aren't they? I do hope tomorrow will be a little brighter for you x

SLK-14 profile image
SLK-14 in reply to Nettekin

Hi Nettekin...these hugs are so supportive...I'm up this morning and the sun is shining....today will be better...Fankoo...take care 😊x

Hello SLK,I know what your going through, please don't take notice of outdated reports, do as advised by HC professionals and I'm sure things will get better.

Loads of love.

SLK-14 profile image
SLK-14 in reply to pjw17

Fankoo pjw17....wouldn't wish what we are all going through on anyone....but it so helps to hear these replies it makes me feel as I'm not alone...take care now big hug...

This will cheer u up m.youtube.com/watch?v=_s95Q...

SLK-14 profile image
SLK-14 in reply to SmokeAKipper

It certainly did..thank you....lol..

Hugs to you and hope your mood lifts soon. Quite aside from your diagnosis, we have had such an awful time with this dreadful virus and I think we then get overwhelmed with any other stuff that we have had to deal with, new or ongoing. It really isn't surprising that everything feels so bleak at times x

SLK-14 profile image
SLK-14 in reply to Spangle14

Fankoo Spangle...things will improve I'm sure😊...take care now x

As others have advised previously, much of what you will read on the Internet is outdated. Have you seen a cardiologist yet? If not, have you spoken to a BHF nurse?

I always considered myself reasonably active and fit but was diagnosed with HF and LVSD with arrhythmia in 2017. I’m now 66 and in a much better place having had a couple of cardiac ablations. It’s only National and international COVID precautions holding me back now. Chin up, don’t despair, be positive; you’ll feel much better for it and have an improved prognosis.

SLK-14 profile image
SLK-14 in reply to IanMK

Hi Ian...I was diagnosed in March this year having Ectopic beats along with LBBB and HF....I'm on whole lot of meds and hopefully keeping deterioration at bay. I've always been a fit person...was a Fitness Instructor for 30years and also ran London Marathon so it's been so much of a shock. I am seeing the HF Nurse and I keep asking what the the my options might be. Ablation has been ruled out regarding my Ectopic beats and I'm due for an Echocardiogram in September haven't seen my Consultant for a proper consultation since I was diagnosed. Have had copy letters to my GP with regards to test results but no proper consultation until September.Thank you so much for your words of support...will keep you updated. It just messes with my head 🙄

Hi, sending you big hugs. I too have lvsd with few etopic beats. I did the same and googled it! Wish I hadn't. I have a heart failure nurse I went to rehab and now with the council's reablement team where I go the gym once a week and I'm monitored. I also have a cardiac rehabilitation therapist who supports me with my mental health as I was really low. I have had tests done my MRI shown no known cause for it and the cardiologist wrote saying my heart had made a significant improvement, and would maybe look at stopping some of my medication further down the line. I stopped my alcohol intake and changed my diet tried to keep fit as I could. I have dipped a bit put the weight back on trying my best to get back on track. My therapist is off sick so haven't had contact for 2 months and I am feeling it not having that chat. Heart failure nurse stopped my water tablets but like this morning I feel a bit puffy.

I've read lots of good posts about people doing well with their heart conditions and this keeps me going. I get to see my consultant for the first time in August and I have lots of questions I'm hoping it will eliviate some of my worries. I hope my post gives you positive thoughts , take care Lynn ❤️

SLK-14 profile image
SLK-14 in reply to Babsben

Hi Lynn Thank you...reading these words really gives me hope. I like you are doing everything I can..no alcohol and I'm walking every day. Haven't been given or any advice on what exercise I should be doing,..and I think like you I'm missing that face to face chat offering advice and support.

Sending big hugs to you....and you take care..😊

Babsben profile image
Babsben in reply to SLK-14

Hi slk-14, your welcome 😊 it's great we have these support groups. I was having physio last year when I was told about my lvsd. I was telling him about it and as luck had it he worked with my local rehab team at the hospital and gave me lots of information. I was in stage 2 heart failure so was put under a cardiac nurse. I mentioned rehab and managed to get a face to face appointment where they could clearly see I was low. The nurse gave me a questionnaire asking me about my mental health. I was then referred to a therapist. I forgot to add before I'm down to stage 1 heart failure and ef has come up. Have you asked your GP or heart failure nurse (if you have one?) They should refer you to get support. Always here to chat 😊 ❤️

SLK-14 profile image
SLK-14 in reply to Babsben

Hi Babsben...That's amazing, I'm so pleased for you...I'm going to do just that when my HF Nurse contacts me again. I'm really struggling mentally...thank you so much for that. Take care now 😊

Sending hugs - and huge wishes for a more peaceful day 😘

SLK-14 profile image
SLK-14 in reply to Brixcos

Fankoo Brixcos....best wishes and big hugs to you..😊x

Hi SLK, I too was diagnosed with Severe LVSD, and like you am feeling very low today and so tired. I have had a few good days lately, went to see my brother at the weekend spent the whole day with him and his family. To be honest just like my old self from last year but today have hit a bad place. I’m trying to get out for my daily walk to see if that can lift me. It is very hard I know to lift up your spirits when you suddenly hit the poor days, I look at tomorrow being another day and I’m sure will be better. As regards your anxiety difficult to overcome but I do take comfort from this site and the people on hear. I read all the positive posts of people who have had the same issues and come through it and have improved their hearts and lead a nearly normal life.

I’m thinking of you today and sending you some hugs.

Try and stay positive.

Hope you are feeling better now. I totally understand how you feel. Some days I feel great and then suddenly my mood will change and awful thoughts sweep in. Do you take anti anxiety tablets? You could give it a go. They help me and I feel more positive. But I guess we are going to have our down days given what we all have on our plates. Make sure you can have some me time and try and do something you really enjoy. I wish you well and lots of hugs.

Have a virtual hug on me. I have severe LVSD. On the usual drugs and CRT-P device fitted. Had an aortic valve replacement ten weeks ago.

Yes. Sometimes it's horrible to think about what's going on and what it means, but every time I go there I think, "What's the point of dwelling on it?" It's not going to make any difference and why waste the time I've got? I try to do stuff I enjoy every day and think about the positives in my life. I really believe that by changing your thinking you can change your emotional state for the better.

Take care, but enjoy your life too.

SLK-14 profile image
SLK-14 in reply to Malcvtr

Fankoo Malcvtr...I really trying to change my thinking...shall be asking my HF Nurse about some sort of electrical device that might give me confidence. You take care too 😊

Sending a very big hug - know how you feel x

SLK-14 profile image
SLK-14 in reply to nursenancy53

nursenancy53...fankoo...sending one back to you x😊

I don’t have a heart condition as far as I know, but reading these supportive posts makes my heart smile 😊 Sending a virtual hug to all of you. You are inspirational . I’m on here because higher risk due to diabetes T1. Wanted to learn from experts about how to take care…if anyone was wondering why I was here!

My diagnosis was pre-COVID so my initial consultation and diagnosis was quick. Even then, though, further diagnostic tests aimed at determining a cause were slow and done one at a time, each one after the previous test had not determined the cause. Since I had health insurance through my employer at the time I chose to take the private route to speed things up a bit. Once a course of treatment starts, though, biology takes its time so it’s back to watching the clock again 🙂.

It turned out that the source of the arrhythmia which lead to my LVSD was close to my AV node and the risk of damaging this important node was high. I decided to accept the risk and now have a pacemaker. I have no regrets and looking forward to enjoying an active retirement post-COVID.

Once you get the appropriate treatment and, perhaps, make a few lifestyle changes there’s every chance you can get back to normal and stop worrying (worrying cannot improve but can only exacerbate your problem).

SLK-14 profile image
SLK-14 in reply to IanMK

Hi IanMK...so true....I'm on maximum doses of medication which I'm tolerating..thank goodness....I am concerned about my LBBB and LVSD as they say I could have a cardiac arrest...no one has mentioned a pacemaker and I'm wondering what the criteria is. Thank you for your comments they will help ma make a decision if needed.

Big hug.Know how you feel.Always so upbeat re my ailments but went on a much awaited painting holiday.Reality kicked in.Too exhausted much of the time to even paint.Too tired to even eat.Came home tired and depressed.Will have to revise all future plans.Was tired and depressed for a week but will bounce back.As will you.We all get days like it and it`s so good to have this forum full of kind sympathetic people with similar problems to cheer us on.I hope by now you`re feeling a little better.Let`s plod on together!!!xx

SLK-14 profile image
SLK-14 in reply to cowparsley

Oh cowparsley...so sorry to hear about your holiday. What you say is so true....the people in here are "Golden" I feel there is always going to be someone there to listen....Keep plodding ...big hug 😊

cowparsley profile image
cowparsley in reply to SLK-14

😀😀😀

Awww big hugs xx some days are hard hun some are good... your entitled to feel how you feel .. just don't stay there too long ... feel the love we all have and are passing on to u ... blessings always x

SLK-14 profile image
SLK-14 in reply to Carmen57

Hi Carmen....fankoo ....big hugs to you too x😊

Sending a big virtual hug. Up until a year ago I was fit and healthy and now everything seems to falling apart. It's hard to cope with isn't it? - but it is also good to share and you have done that. I had an emergency admission to hospital at the weekend that was very scary but my friends rallied round and helped me try and bounce back. I find myself crying at various points throughout the day but I've decided that is good as it gets it out of my system. Then I tell myself to pull it together! But it's not always easy. Medical advances are improving every day and we have a fabulous health service so I take heart in that. (excuse the pun)

Keep sharing your feelings if you can. x

SLK-14 profile image
SLK-14 in reply to Cornishbeach

Hi Cornishbeach....so true every word you have written...find myself crying when I least expect it. I really don't talk to anyone about how I'm feelings...when asked how I am I find myself saying "I'm good thanks" Sending big hugs...take care now..x😊

Cornishbeach profile image
Cornishbeach in reply to SLK-14

HI SLK-14Try and find someone to listen if you can - I use the word 'listen' as that is what you need. I'm just as bad with the 'I'm fine' rubbish! I have found that writing things down helps to. Bit like replying to an email with exactly what you would really like to say but can't as it will get you into trouble and then rewording it to be politically correct and no swearing before finally sending it. Write down all the worries and fears you have, leave it for a while, have a good cry and then go back and create some questions for your consultant /GP based on your fears. It may help. Take care - sending big hugs back x😊

Black and white writing
SLK-14 profile image
SLK-14 in reply to Cornishbeach

Cornishbeach....thank you so much. Going to get my writing pad and jot down what's worrying me. Will keep you informed...thank you again xx😊

Good call to write down all your questions to ask your consultant. Also take someone with you if you can to listen carefully to the answers as you may be preoccupied thinking about your next question.

SLK-14 profile image
SLK-14 in reply to IanMK

Thanks Ian...will be taking all the advice I can get..take care now

I feel down quite a lot. I am having counselling which does help me nevertheless i cant say I’ll come to terms with what has happened to me so easily. I had my HA on 17 March & had 4 stents put in i stopped smoking immediately & i am trying to get fitter but some days i just cant seem to get motivated and i know I’m not the same person anymore but am thankful for being alive. I take each day as it comes (baby steps) & am kinder to myself. I wish you some better days

SLK-14 profile image
SLK-14 in reply to Trikam

Hi Trikam....yes it is so hard to come to terms with what's happened. I have learnt so much from the people in this group, their comments have seen me through the dark days. I don't think any of us will be the same as we where before our diagnosis. Try to be positive, easier said than done. Take care now 😊

Sending you a big virtual hug. It’s so difficult not to feel down after such a shock. However, many on here understand and possibly still have down days too. It’s a lot to take in when everything you’re used to is changed so suddenly. It takes a little time to sink in and I know I now try to reset and (as my daughter calls it) ’kickass’ my negativity by thinking how lucky I am that the problem was found and treated and thank the lovely and clever people at our wonderful NHS for that privilege. Take great care of yourself and all the best. 🙂

SLK-14 profile image
SLK-14 in reply to Trog1

Hi Trog1....Thank you so much for your kind words. I wouldn't wish our condition on anyone, however, it it of great comfort to know there are people on here who have such a great understanding of how we all feel. I have learnt so much after being on here for a very short time. Thank you once again...take care and stay safe...wishing you all the very best 😊

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