Coping....

[Goback]

Hi, I'm new here..my biggest problem is back in Nov I was diagnosed with...LVSD, bundle branch block, AF, enlarged heart, pericarditis and myocarditis, I had a CRTD pacemaker fitted, which went off inappropriately 18times in 2hours and now I'm being referred for either a transplant or LVAD. I've try to reach out as I'm not coping very well, emotionally or physically....

[Highlandmist]

Hi, I just read your post and understand how unsettling this time must be for you.

I have no experience in what you're going through. I had an unexpected mitral valve repair done last year and it threw me for 6, what I had is minuscule in comparison.

I found my head stopped whirring around the place when I contacted my GP and spoke to the community nurse - having someone listen to how I felt and just let me get it all out made me feel less alone.

This site is really helpful too, people can associate with what you're going through.

I hope this helps a little. Take care x

[Goback in reply to Highlandmist]

Many thanks, my GP said that my heart failure nurse would be able to help...but unfortunately apart from phone numbers and web sites there's not a lot else she can do ....

[Highlandmist in reply to Goback]

I reached out to the British Heart Foundation helpline, and spoke to one of the support staff. They told me to contact my GP and ask to speak to the Psychiatric Community Nurse which I did. I believe this was my turning point, yes she gave me a list of sites to visit, but she also listened and that made a difference. It's hard for family/friends to understand what we're going through so someone who knows about this is a huge help. Just talking to her and getting info...these were the steps I needed to gain control again.

Go for it x

[Goback in reply to Highlandmist]

I will..my daughter spoke to bhf when I was first diagnosed in November but what they said was because of all that was wrong with me and my age I would need to half a dozen people....so we've been searching since....oh and to top it off I've a aortic aneurysm that's at 5cm...😂

[Highlandmist in reply to Goback]

then some positive chat is just what you need 😀👍

[Hidden]

All I can say is I am a little ahead as I have an LVAD and CRTD and waiting for transplant. There are challenging days physically (many ) and emotionally (sometimes).

I try and stay as positive as possible.

1. I am still here because they give me an LVAD.

2. I might get a transplant and lead a "more normal" life again.

3. I am well looked after by the medical team in my transplant hospital.

4. I try to get on with life as much as possible.

Living with an LVAD is a bit of a pain at times but you get used to it and it's not too difficult at all. Try and find someone to talk to that you are comfortable to be open and honest with and say everything you want out. And don't be afraid to shed the odd tear. There is no shame and it does help.

[Goback in reply to Hidden]

Thank you so much for your reply, shedding tears is something I'm doing a lot at the moment..as is being scared, especially when I'm talking about what is to come..m y heart failure nurse has informed me that an LVAD is a more permanent procedure in some cases...the transplant hospital has my records and I'm waiting for that first consultation which hopefully will get me access to their amazing support team.....but untill then I really struggle