Advice

[neilpreston]

Hi, I’m new here. Acute heart failure July 2018, many med changes without success, CRT-D fitted Nov 2018. Further med changes since then including changing from Ramipril to Entresto. Still no improvement. Now consultant is discussing heart transplant and I’m scared. Any support or advice very much appreciated

[Kristin1812 Heart Star]

Hi Neil. Welcome to the forum. You have come to the right place, and I hope someone with a similar background will come along soon.

I’m pleased Your case is being actively managed. We read that Hospitals are trying hard to keep both streams of work going.

I’ve had some very good treatment over the last 6 months, delivered slower than usual, but I‘m now feeling amazing. I hope they can do the same for you.

[Smileyian]

It indeed must be scary Neil but you are in good hands. Do you know what your Ejection Fraction Rate is as of now ?

[neilpreston in reply to Smileyian]

Thank you for your reply. My EF as of last month was 24% which hasn’t changed in the last 6 months.

[Curryandchips]

Hi Neil,

I think I am in the same boat as you. I have been trying different drug combos for three years and still very much knackered and breathless - my left Ventricle is shot.

Transplant has yet to be mentioned and I'm not sure how I feel about having that conversation.

There is a member here called thanksnhs who had a transplant in July. Her blog is interesting and she is very helpful. Might be worth chatting to her.

[neilpreston in reply to Curryandchips]

I will most definitely look her up, thank you for taking the time to reply and good luck yourself with progress

[FeetheBookworm]

Hi Neil, when I was first diagnosed my EF was 17, fairly quickly up to 24 where it stayed for about a year. 3 yrs on it was up to 43% was discharged from HF consultant and nurse care to GP. I’m still on the same meds :Ivabradine x 2, Losarton, Spirolactone, and Bisoprol. Still get v tired but life is much better. I can at least walk a reasonable distance every day with my dogs (2-5 miles depending on the weather!) and try to eat as healthily as possible.

Have you been given a heart failure book to follow? I regarded mine as a medical bible and read it cover to cover and tried to follow the advice where possible.

Take your meds, listen to the advice and give yourself time. Recovery doesn’t happen overnight.

We are all here for you and happy to offer help, commiserations and anything else you need.

Fiona

[neilpreston in reply to FeetheBookworm]

Thanks for your great reply. I was originally at EF or 11% but my CRT-D and meds brought it up to 24 where it has stayed for a Long time now. I am only 42 years old and get very out of breathe just walking around the house and getting worse each month. That is the reason my consultant is now considering putting me in touch with the heart transplant centre

[FeetheBookworm in reply to neilpreston]

Well they know what they are doing and at your age you should certainly have everything thrown at it.