Help please!!

[Summerbreezesomalis]

Hi all,

I'm hoping someone will be able to help me. I was diagnosed with cardiomyopathy in November. I met a heart nurse once once I'd returned home after a 14 week hospital stay, but that was approx 5 weeks ago and I have no one else to talk too if I have a problem. I'm waiting to go in for a pacemaker fitting asap at Papworth with my consultant, but I can never get him to talk too as I thought he would be ideal to answer my queries.

Sorry for the long post, I'm just worrying and tbh really scared that I'm going through this at 41.

Any help gratefully received.

Lisa

[Shar28]

Hello, have you found Cardiomyopathy UK? They have a very useful website and fantastic nurses on a helpline, which is available weekdays 8:30 to 4:30. Details below:

cardiomyopathy.org

0800 018 1024

Perhaps call them to discuss your situation and queries.

Best wishes.

[Teddy66]

Hi Lisa

Sorry to hear your story but your not alone, I was diagnosed with dilated cardiomyopathy 14 years ago when I was 35, you can ask me any questions or the cardiomyopathy website have nurses online.

Take Care Tina

[Heartlady123]

Hi Lisa... you are definitely not alone... I too have cardiac myopathy which I have had for 24 years..

So there is life after diagnosis. I have recently had a CRTD device fitted. Is this what they are fitting you with? If so it's a marvellous device which makes you feel much better. The pic above was taken a just 5 weeks after the op. I guess what I am trying to say is to be reassured about the upcoming op... and that these devices do help with our symptoms and can help us to gain a normal life again x.

I used the BHF helpline and spoke to nurses when I had worries or just wanted advice... and they were brilliant and helped me navigate the whole process and gave me reassurance. This forum also helped immensely too. If I can help at all please ask me, we are all here to help each other. And see if you can speak to the consultants secretary ( they are a great source of informstion) to see if you can find out what timescale they are thinking of for your planned op. Hope this helps karen