Next stage of my 29 year Heart journey

[Heartlady123]

Hi all,I have been absent from the forum for 4 years, having been fitted with a CRTD device to help my heart, i decided to get out there and live life, after being given this umpteenth chance 😀.

I believe in PMA , looking after myself healthiest and exercise, as well as getting out and having fun.

This year I have started to feel worse ( I was advised by my GP to sell my house if I wanted to stop working!)

In May I went to mu latest check ul to be told my EFR had gone down to 28 ( severe heart failure) and so I have now stopped working, am trying to get some benefits, whilst trying to focus on my health and to try to stop further deterioration.

I have started taking a tablet that has just been licensed in the last 12 months ( defaglrizon - something like that where they have had some amazing results! So am keeping everything crossed that this will give me another heart kick start 😀 x

I'm also feeling much less stressed since stopping work.... so concentrating on enjoying the slowed down but hopefully still lots of fun stuff xx

[Lezzers]

Hey, welcome back though I'm sorry to hear you now have severe HF. My husband has swung between moderate to severe to mild to moderate & back to severe in the last 3 years, so it's all very mind boggling!!

When my husband went on dapagliflozin a couple of years ago ago he almost immediately noticed a difference in his energy levels, he did say he hadn't realised how slow he become until he took this. So hopefully you'll feel the benefit soon. He's now also taking Entresto. I assume you're also on this as it's also a new wonder drug for HF that's showing great results.

Time to enjoy your early retirement, I also retired early in 2021 to look after my husband, a different type of stress unfortunately but that's life. Claiming benefits is a bit of a minefield to navigate but fingers crossed 🤞 for you.

And yes, definitely there's still fun to be had even with severe HF.

Take care

[Heartlady123 in reply to Lezzers]

Hi there Lester's,Lovely to hear from you and good to hear that the numbers CANchange upward. That's what I am hoping for.

It's good to hear your feedback to the new wonder drug. I'm feeling very dizzy on it, but I naturally have low blood pressure, jut am persevering.

I'm not on the entresto, they want me on eplerenone but that one gave me chest pain and made me feel super ill.

I'm awaiting an appt with the HF nurses( my GP said they don't have time to work through helping me with my meds) so I'm going in with a plan of what I would like, based on my tolerances. I will defo ask about entresto too, so thank you for that x

Glad to hear that you too have given up work. And hope that has taken some pressure off you too.

I did have a funny turn in majorca this year, so now focusing on holidays in beautiful UK. Lots of places to explore, and adventures now to be had! 😀 xx

[Lezzers in reply to Heartlady123]

I hope you're recovered from your funny turn. I love Majorca, my sister lived there for years. Focusing on beautiful UK sounds ideal, we have some gorgeous places here. We live in a lovely coastal village on the east coast of Norfolk, it's an area of outstanding natural beauty. Lots of beautiful unspoilt white sandy beaches that go for miles, fishing villages, nature reserves etc. Definitely lots of adventures to be had, we have our eye on the Scilly isles & the eastern coastal path in Scotland. My friend did that just recently & the scenery is stunning. Wales is also very beautiful.

I'm sorry to hear that you've been feeling dizzy, hopefully that will settle down. You could ask about spirolactone in place of the epleronone, I think they work in a similar way. Entresto might be a problem though as it's known to lower your blood pressure quite a lot, so if you've already got low BP that might not be an option.

Let us know how you get on with the HF nurses.

Take care xx

[Heartlady123 in reply to Lezzers]

Oh I'm now jealous of your beautiful idyll . Sounds gorgeous and glad you are able to enjoy all your wonderful surroundings. I live in Buckinghamshire, which does have some lovely countryside, but we are many miles from the beach.

But just seen that there are coaches for just £28 that can take me to lovely beaches for the day. And cheaper and less stressful than driving, so once tge dizziness calms down I think that could be a plan.

Re meds I unfortunately am intolerant to a lot of heart meds, as they all seem to lower your blood pressure, which is a challenge for me. So now it's about trying different meds, and also keep eating the local honey to keep my heart protected. And it's about slowing my life down, and enjoying it. It's good to be away from the pressures of working which I feel will really help x

Thank you for your lovely messages, and yes I will keep you updated on my journey, and I am always the optimist ( which my Dr's say have helped a lot to keep me well for so long) so going to enjoy down time and plan my time now x

[Yumz199725]

Hi Heartlady123 I'm fairly new to this forum so I haven't had a chance to get to know you, welcome back to the forum! That's good you had 4 great years but so sorry your health has taken a turn for the worst. That's good your able to rest x hope your meds help improve your EF and keep us all updated on your heart failure hun. 💔

[Heartlady123 in reply to Yumz199725]

Thank you for your message and yes not good that the HF has worsened but I am staying focussed to do everything I can to improve test number, along with a bucketful of PMA. And at the same time I'm looking at living life and enjoying the sunshine x

[Thanksnhs]

Hi and welcome back, sorry to hear that your heart failure has got worse. I was the same when I was on entresto they tried to up the dose and my blood pressure went so low I could hardly walk, I did manage to stay on the lowest one until I got my transplant three years ago this month. I had to give up work when I was 58 and I found it so stressful dealing with DWP I eventually got PIP and I was put in the ESA support group which is a higher rate and you don't have to be re assessed, I will stay on that till I get my state pension next year. It is a bit of a minefield and I hope you get it all sorted out soon and you can relax and enjoy your retirement. Take care char

[Heartlady123 in reply to Thanksnhs]

Hi there,Thanks for your message and your feedback re the benefits claims. I am going for ESA, going for the higher support option too, although my GP was very negative about me getting it, although they are agreeing I will be on long term sick.

Citizens advice have been brilliant and I will claim and see where it goes.

I'm trying not to stress about the financial as I need to concentrate on my health now and start tge tablets to see if we can at least stop the deterioration.

Good news that you were able to get a heart transplant and hopefully you are feeling much better with your new heart xx

I'm keeping my PMA going. But recognising I need to slow down a little too.

I'm hoping to post good news over the coming months xx

[Thanksnhs]

Fingers crossed you get it ok it took me a while but I got there in the end, I lost the higher pip after my transplant but I am not complaining about it as compared to how ill I was the transplant has made a big difference. I still have a few issues with different things but I am here to tell the tale thanks to our fantastic NHS. I hope you get everything sorted soon and the doses of the meds get adjusted to levels that will help without too many side effects. Char