Hiya,
I’m a 46 year mum recently diagnosed with heart failure, LVSD to be precise. At the time of diagnosis my EF was just 15. I’m on a plethora of drugs that the heart failure team are currently trying to optimise. I’m trying to put a brave face on it all and have started a phased return to work, but I’m scared, miserable and exhausted all the time. Would be lovely to talk to people who understand and going through similar stuff.
Hi, I have cardiomyopathy diagnosed in my thirties, now I am early forties. I have school aged kids. I don't have exactly the same condition but can empathise with the exhaustion and brave face and trying to keep everything going whilst absorbing life-changing news.
It is OK to not have a brave face all the time, though it can be hard for friends and family to understand.
Has your workplace been supportive? Do you feel ready to go back?
From what I have read on here some people can see a big improvement in EF once they have been diagnosed so hopefully you will too.
Hi, Thank you for your reply. I definitely haven’t had a brave face on today. My EF has improved slightly but it’s the exhaustion that is hard to cope with. I’m only 6 months down the line though and apparently there is quite a bit of medication juggling so hopefully things will get better still. Just feel so bad that my 7 year old is missing out on activities with me.
Hiya Dru75
Had the exact problem CHF EF12 but that was after being missdignosed as a chest infection
3 times after 3 different courses if anti-biotics and sterloids was seen on a late friday gp whom i had never seen before or after(i have tried to contact through practice)who rushed me into hospital with 150hbpm and afterhaving pump inserted moved to the heart transplant ward in the Golden jubilee where it started to drop through as you are going throug various medication .
I have 5 kids and 2 Grand kids who i missed a lot of time with through the year's working 7 days a week having some time at home on call,which i suppose is kind of catch 22,you are out working hard to try and give them the things they want but missing them at the same time!
4 out of 5 kids are girls who have me wrapped round their fingers oldest 30 and youngest 4
and run rings round and then try and raise my voice to calm things down
and my youngest Faith who is 4 just looks at me and i just melt and say"right ok then"so
as you can imagine is a weee bit loud sometimes and when aftercouple of month
bpm down EF up to twenties which i didnt really understand at first that nobody's is ever
100%.
Anyway i also have enlarged heart cardiomegaly Asthma and couple of other health problems Anxiety which i already had before, pdsd etc.
When i was in hospital i was told off most coctors that i would never work again
which i still have trouble trying to accept.
But when i was disschrded to my :stress free enviorment:
😀🌈(I think that is a myth)started to realize and accept tat i couldnt do what i used to so you are lucky and some people may say i'm mad which is probably right but i always looked forward going to workias a industrial steam boiler engineer,so part of accepting that
after years of doing all the hard work and courses to get to where i was where no longer an option ,even if i could i wouldnt as i would a lot of other people to think about if something happend to me while working away on a main steam valve or up in a cherry picker.
All of that kind ofmade me get through as my health both physically and mentally
wher very low .But now i am slowly getting there (baby steps)as one of the dotors
says,and this pandemic has chopped and changed a lot of my hospital appointments
where i was not going to get scans etc.as often .
I am a 46 year old man and i was using a lot of excuses as i could not run around like a
teeenager or cycle for miles like before which the doctors in the jubilee
say may have helped me get through the worstas was a bit fitter then ,tried the getting old ,no chance as am still a strapping you lad so just to send my warmest regards and to let you know that it does ,will get bettera and thogh you may fell it you must br doing good
or you would not be out and about and remeber also take it easy as you get about more you will start to feel a bit fitter and it could be worse you could have 7 to run about after!(HA-HA)wouldn't change a thing !
Wow Brian, you certainly have a lot on your plate with all those girls. I think I’ve just hit a wall and started to feel sorry for myself after having a panic attack at work and having to come home. Think I may have started too much too soon. I too have anxiety problems that have been medicated since I was a teenager. Together with hip displacement arthritis and and hypothyroidism. It certainly makes things a challenge. It’s weird you say about chest infections etc. I too was treated time and again with chest infections and treated like I had asthma. Years down the line got told it wasn’t asthma but I had an enlarged heart, global cardiomyopathy and SLVSD. Was angry at first thinking if caught earlier I wouldn’t be in this position. If I hadn’t have collapsed I would have been living in ignorance. I wish you and your girls all the best and thank you for taking the time to reply. Joining a group like this is very out of character for me but I think it may be a good thing x
No prob's Dru75
It sounds like you,also like me, have been through the mill.
When reading you're reply it look's like we have both been through similar
expriences.
I was diagnosed with asthma when i was very young,and can remember being in yorkhill hospital that much that it was like a third of the my chilhood years iwas having sometimes quite bad asthma attack's,can remember one of my report cards saying that i had attended or attendance was half of the term.
I think as i wrote on my profile i was in my early teens whe i had last one,and
can also remember having lots of chest infections and kind of knew that this
was not the same thing could only walk along the road and had to stop and sit
and have a breather ,and after working with a lot of dangerous chemicals was
thinking it was maybe something like that.
So may sound funny but wanted it to ne an infection because after an antibiotic and a rest i would be ok!
Anyway iam going to go now as my sausage finger's have started tu swell to
where i will have to use a pencil (ha-ha )as for the coming on to a site and writing about it is defintely a good thing ,may not be the same as sitting talking to someone
which i have been waiting to see for years after various mix up's
is good to send messages to help someone who is worried about something
similar and you can let them know or to ask for answers and help people
to face something can only be a good thing!
Again warm regards
Brian
Hi ,I have a leaky heart valve and feel fatigued and when working my blood pressure and heart rate went sky high and they said it was stress , so I left my job ( as was carer going into covid) but now worried about going back to work and it happening again . Feel for you
Wow Brian, you certainly have a lot on your plate with all those girls. I think I’ve just hit a wall and started to feel sorry for myself after having a panic attack at work and having to come home. Think I may have started too much too soon. I too have anxiety problems that have been medicated since I was a teenager. Together with hip displacement arthritis and and hypothyroidism. It certainly makes things a challenge. It’s weird you say about chest infections etc. I too was treated time and again with chest infections and treated like I had asthma. Years down the line got told it wasn’t asthma but I had an enlarged heart, global cardiomyopathy and SLVSD. Was angry at first thinking if caught earlier I wouldn’t be in this position. If I hadn’t have collapsed I would have been living in ignorance. I wish you and your girls all the best and thank you for taking the time to reply. Joining a group like this is very out of character for me but I think it may be a good thing x
I’m so sorry Terri14, I think I sent the wrong message to you by mistake. Thank you for your reply. A carer during COVID is enough to send anyone’s blood pressure sky high. I do think stress at work is making me feel worse, although I like my job, I’m just worried I’m doing too much. It’s difficult trying to find the happy medium when you’re too young to jack it all in but want to be around to see your kids grow up x
No worries Dru75 , all the best to you
Hi, Shelf , I was diagnosed younger than you, I am now 77yrs old , I have a CRT fitted , and take 12 m Bisopropol, Digoxin 1 ml and bumenanide ...I had very severe allergies to the normal BP tabs .
I work virtually full time fundraising, drink too much alcohol, eat too much good food , so try and just enjoy life , worry is the biggest killer , keep busy , keep active
Pam
I was told the last thing you should do is ‘ take it easy’ , you must keep the heart pumping and be happy so many worse than us , in dreadful pain day and night , so get going , volunteer , write a story, ring an elderly lonely person .Pam
Hi , I've just come across your post . I have recently been diagnosed with LVSD. How are you 1 year on?
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