Consultant news

[Cherrelleford]

Hey allAfter having DCM for 3 years and going through so many tests, getting an ICD fitted and meetings with the transplant team. I had my delayed meeting with my consultant on Thursday. I have been signed off from the transplant team and the ablation I had has helped. My EF has gone up again to 35% but he said he doesn't know what the future holds but at the moment he is very happy with my progress. I am having my furosemide stopped and my entresto can finally be increased as blood pressure has improved a bit. Only downside is I have nerve damage from my ablation but there's nothing he can do about that. I am feeling positive which is something I have struggled to do over the past 3 years.

Thanks for taking time to read my post x

[EarlyRiser2]

Hi CherellefordWe are in a similar situation to the journey you have been on. My husband was diagnosed in February with DCM and prior to that with persistent AF. His EF was 15% and hadn't improved when we had his check up with transplant team in May. Good news was it was no worse. He's just had cardioversion for the AF which sent his heart into shock. 3 days on ICU and 4 on CCU. He has a normal heart rhythm at present. His BP is often low but he had been tolerating the high rate of Entresto prior to the cardioversion.

Thank you for sharing, it gives hope that his heart can improve. It's such a scary time and wasn't what we expected at all! I hope you can tolerate the next dose of Entresto and see more improvements. Stay well x

[Cherrelleford in reply to EarlyRiser2]

Thank you. I won't lie it's been a struggle and have wanted to give up. But I'm happy that improvements have been made. I wish all the best to your husband, it takes time but improvements do come. Take care x

[DaveTR]

Great news ! I hope your health continues to improve 🙂

[Cherrelleford in reply to DaveTR]

Thank you. Don't know what the future holds but I'm more positive than ever x

[Jeremyrunicles]

Great news cherrelle well done.

Such a big difference to where you were when you started. Keep going with whatever you are doing, it's clearly working. And a positive attitude is one of the biggest hurdles so double we'll done. x

[Cherrelleford in reply to Jeremyrunicles]

Positivity is something I've struggled with but thank you for your lovely message xx

[Bingo88]

Well done on feeling better and having a positive attitude always helps and try to keep enjoying life with holidays and memories. Brian

[Cherrelleford in reply to Bingo88]

Thank you bingo88. I will do my best x

[Lezzers]

Hey, that's absolutely brilliant news, probably a bit overwhelming too., well done

Could I ask what nerve damage the ablation had caused?

[Cherrelleford in reply to Lezzers]

Yes it was a lot to take in but glad it was positive news. The ablation caused nerve damage in my groin at the entry site, it's something that can happen but nothing can be done about it. It's like constant pressure in that area, but I'm ok with it x

[Lezzers in reply to Cherrelleford]

Thanks for replying. My husband had an ablation last year which seems to have worked so far. He has some problems which is why I asked the question about the nerve damage but I don't think there's a connection.

Sometimes we have to accept that they'll be some collateral damage along the way but if it's ok and livable that's good, the bigger picture is you're doing ok & that's what matters. X

[Alicant]

it is difficult..but keep on smiling and enjoying as much as you can..it’s difficult not to think about future but no one knows their future except the good Lord..so make the most of every day ( easy to say I I know) ..a little target each day..not health wise ..and life becomes good..Take care

[Cherrelleford in reply to Alicant]

Thank you for your lovely words x

[Alim783]

hey, similar position and just diagnosed. So are you having a transplant or do you mean signed off that they have decided you don’t need one?

[Cherrelleford in reply to Alim783]

Hey I've been signed off for now as medical therapy is working. X