just introducing myself :)

[laura_dropstitch]

Hi, I'm Laura. I'm 37 years old and was diagnosed with advanced heart failure just over 5.5 years ago while 31 weeks pregnant. My daughter was delivered the very next day (bit of a shock!) and we both started our journeys towards health/recovery. My daughter is doing great - loads of fun, loads of hard work, starting school soon, with no long-term ill effects from her early arrival as far as anyone can tell. Things for me are still not great. My heart is not at all what it should be, but has been stable for a few years now, and stable (as my consultant always likes to remind me) is good. I take lots of medication and have a CRT-D device fitted. I've spent the last few years really working on my mental health (with fantastic support from a BHF-funded psychologist as well as my GP and other health professions) and, now that I've made so much progress on that side of things, am hoping to make some progress with my physical health through lifestyle changes - diet, exercise etc.

I'd love to hear from...

* anyone who's doing their best to exercise (and/or diet) with a heart condition, maybe even someone looking for an online fitness buddy?

* any "women of child-bearing age" (ugh!) with or without children

* anyone who's managing to see their heart condition as a positive experience in any way (or living positively despite viewing their situation as negative)

* anyone at all really!

Thanks

[lincskiwi]

Hi Laura

I was diagnosed with severe LVSD, EF 23% in March, aged 45. I can't imagine how it must have been for you at 37 and with a baby!

My HF is thought to have been caused by chemo I had in 2003 for breast cancer, (at just 31 and with a 4 year old at the time) so although I am struggling to get my head around the enormity of this recent diagnosis, I am trying to remain positive and be grateful for having the last 14 years cancer free. Also, I have had an awful 2 years of unrelated surgeries and actually, this diagnosis was almost a relief in the end; it explains why I have felt so rubbish for so long, why I have faced complication after complication following each operation and struggled to make a full recovery.

I know I have a long way to go but now that I am "stable" (my new favourite word) some of the symptoms have eased a little and I am feeling better than I have for a long time

I desperately need to "diet" as sitting on my backside for the best part of 2 years has not done my waistline any favours but am very unmotivated (and actually a little scared of starting an exercise programme) - an online fitness buddy sounds just what I need!

Here if you want to reach out

Teresa

[laura_dropstitch Heart Star in reply to lincskiwi]

Thanks for your reply, Teresa I can't believe how sensible and positive you sound given you were only diagnosed in March! Maybe having had a serious health issue before has helped to strengthen your resolve and given you good coping strategies. Every cloud, etc... Ha!

It's fantastic that your treatment is already making you feel better, long may it continue in that direction. When you're used to feeling awful, any slight improvement or increase in energy feels amazing, I think.

Would be great to be online fitness buddies! How should we work it, do you think? I'll give it some thought and maybe message you in a few days with any ideas that come to me, feel free to do the same.

Thanks again for getting in touch and good luck with everything x

[lincskiwi in reply to laura_dropstitch]

Haha, not always sensible and positive! Trying very hard though...

I found a video on u-tube for cardiac rehab but just haven't had the motivation to start a programme yet - a buddy would be fab - youtube.com/watch?v=1iyBNlX...(Not working as expected?)

There's loads of other stuff on there if you have time to have a look

I'm heading away this afternoon for a girls weekend (YAY!)

But we should aim to start something asap if you are still keen. We could hook up via Facebook messenger or whats app?

Speak to you soon

Teresa x

[Hidden in reply to lincskiwi]

Hidden this might be a useful thread for you

[laura_dropstitch Heart Star]

Hi Teresa, hope you enjoyed your girl's weekend! I had a busy weekend myself, so haven't had a chance to look at YouTube yet (where, for some reason, I'd never thought to look for specific cardio rehab clips...) but I will check it out soon. I'll message you my contact details so we can arrange something via Whatsapp. Would love to work together on this!

[Funky_Uk]

Hi... I had my second pacemaker fitted when my son was 20 months old so I know it's hard with a little one he's 7 now so it gets a lot easier lol I am thankful to my pacemaker as it gave me the chance of being a mum, before that I could barely walk around the supermarket so I couldn't have had a child. Sounds like you have had more than your share, hope you are managing to stay positive, take care x

[laura_dropstitch Heart Star in reply to Funky_Uk]

Hello. My daughter turns six this week, no idea how that happened! She's at my mum's this weekend while I recover from a nasty virus and, even with this bug, I must admit I am enjoying the alone time! 😂 I am all about the positivity generally, just having a slight wobble this week. Always nice to hear from another bionic mother x

[Funky_Uk in reply to laura_dropstitch]

Always nice to have a bit of alone time especially when it hardly ever happens hope you feel better soon! Hope your daughter has a lovely Birthday x

[laura_dropstitch Heart Star]

gov.uk/pip/how-to-claim

Think this link will be more useful than I could be. Seems there is an element of luck in whether or not it is awarded, all I would say is answer questions based on your worse days rather than your better days. I don't get a lot of money from it, but it's enough to allow me to work a few less hours and keep my car on the road, both of which make a big difference to me health wise. Good luck with it.

[laura_dropstitch Heart Star]

My heart condition isn't thought to be genetic, but my daughter is checked regularly to be on the safe side.

[sam295]

I had a pacemaker fitted 14 days ago and think I tried to do too much today and fainted briefly. I am back tomorrow for a pacemaker check to see why. I am glad of this site as I am new to all this info and and have to learn alot.