Hey all
I'm feeling pretty happy after my meeting with my consultant. Although my heart is still severely impaired, my EF is now 25%. Taken two years but it's improved from the 10-15% that it was. I also no longer have to take warfarin, I am being changed to one of the new blood thinners. Just got my fingers crossed I get signed off from the transplant clinic in 2 weeks.
Have a lovely day xx
Thanks for sharing positive news. You have every right to be happy! Hope this journey continues in this direction for you 🙂
Thank you very much 😊 x
That's really great news to read, Cherrelleford and thank you so much for sharing it. Stories like yours give hope and optimism to so many others. Here's to further advancements for you in the near future. Carol
Thank you very much. Been an uphill battle but going in the right direction hopefully x
You're definitely going in the right direction, Cherrelleford - an uphill battle you're deservedly winning! xox
Hello 
This is good news I am really pleased for you and I really hope you get signed of from the transplant clinic to
Let us know how you get on x
Thank you very much. I have my fingers crossed that I do and I will do x
Hello
Will keep mine crossed for you to and look forward to reading what they say hoping it is positive x
That's great news! Hopefully it'll keep improving for you!
Thank you I'm hoping so xx
Do you get many symptoms with your heart being 25%?
My symptoms are very well controlled at the moment. But then again I don't tend to notice them, which is why I'm often told I'm difficult to treat lol x
Same as my husband his heart rate when admitted to hospital was 160+ and didn’t feel it beating that fast Jist felt unwell
That's amazing improvement great to hear x 😄☺️
Thank you x
I am really pleased you are heading in the right direction. Poor you it’s sounds like it’s been a tough time. Have you had a transplant or do you mean off the list as you don’t need one now? Best wishes for improvements each day. Xxx
Hey. Thank you. Since diagnoses I've been seeing the transplant team just in case I'd need one, but I've been stable so hopefully be signed off until that day comes xx
Fabulous news then. I was told I may need a transplant but also managed to avoid with great medication. So pleased for you. Keep taking baby steps and the medication hoping you keeping getting better and avoid all these germs going round too. X
Hi Cherrelleford, it is great to hear your positive story. I had a cardiac arrest in September last year and then a triple heart bypass in November. My EF was 25% and was recently measured again at 25% in early September. I then had an ICD fitted on 29th September (just over a week ago) and all is fine at the moment. I had a little discomfort from the area it was implanted but no real pain so I would say don't worry about the procedure or the post op symptoms. I now have to take things easy for about 4 weeks and then after that I understand my life can get back to some normality with a good degree of protection against arrhythmias and cardiac failure. If you are to have an ICD fitted I would say be positive and optimistic as you will be well looked after. Please would you you tell me something? Did you do anything specific to improve your EF from 15% to 25%? This is a fantastic improvement and shows your heart is getting stronger. Did you exercise or was it your medication? Or a combination of both? Please let me know a as I am keen to increase my EF from 25% if I can.
Many thanks and take care, Deano
Hey. I had an ICD fitted the same year as my diagnosis as my EF was 10%. Yes was uncomfortable to begin with and I feel it pacing because of how weak my heart muscle is. I have had an ablation too to prevent my device shocking me. I live as normal as I can. I walk as much as my body will allow and my medication has helped although that has been a struggle as my body rejects a lot of it. Haven't done anything specific to improve it, just had an amazing heart team. It's taken 2 years for that improvement so I'm happy. Good luck to you and take your time xx
Hi, thank you so much for taking the time to reply. Getting your EF from 10% to 25% must have made a big difference with your ability to cope with exercise etc. I have always been active (football and golf mainly) so I am very keen to maintain an active lifestyle through walking and maybe some golf in the New Year. I will be asking my vascular consultant for advice but I hope exercise and medication will help to improve my EF and my ability to cope with exercise. I will be aiming at gradual improvements rather than trying to run the London Marathon!Thanks again Cherrellford and please keep me updated on your progress if you get time. Take care, Deano
Hello Cherrelle, I’m very happy to read that things are starting looking up for you, specially knowing you’re still so young!
Can I ask you what meds are you on? My situation is different because I’ve got HF following a congenital heart defect (the past 50 years then ☺️).
I’m on few different drugs but the one I think has been a real game changer for me is Entresto. Wish you all the best
Hey. I currently take furosemide, a high dose of bisprolol, dapagliflozin, warfarin and the lowest dose of entresto. It's taken a long time to get my meds right lol xx
Ok, thanks for the reply. I take 2 out of 4 meds that you take, my entresto dose is the middle one so slightly higher than yours as I can tolerate it and it has made quite a difference on my EF and my general well-being. Wishing you again all the best
Hi, I don't know much about ablation but t am doing a bit of Internet reasearch. Sounds like it has helped you. Best wishes, Deano
Thank you again x
I am really happy for you it is the best news
Thank you very much x
Congratulations , wonderful news. Please keep us updated on your progress
Thank you very much and I will do xx
Great news. Really pleased for you 🤗
Thank you very much x
So happy for you , how did your heart improve ? Was it the meds? My husband has an appointment at the arrhythmia clinic . His left ventricle is only working at 33% at the moment we found this out on an eco cardiogram after his stroke three months ago . His AF caused it . Do you mind me asking what caused yours? Thank you and hope you continue to improve x
Hey. The doctor's do not know what caused my DCM, and the cause may never be found so I'm told. I'm not sure how it's improved in the 2 years I've had a number of procedures and investigations. My medication is constantly changing as my body like to reject them. Now at a happy place with my medication and I have an amazing heart team. My heart is still severely impaired and nothing will change that so any improvements are a bonus. Hope you husband is doing ok, ask as many questions you can and tell him to take it easy, I hope he gets some improvements too. Mine took 2 years x
Lovely news. Not easy to improve EF so always positive & encouraging when we hear this 🫶🏽 Hope you keep seeing progress.
Thank you very much x
I’m so pleased for you as you’re still very young. I hope it continues to go up and also you get signed off from transplant as you request. Obviously the cocktail of meds are doing their job. Keep updating us how you’re getting on. All the best.
Well done cherrelle that's great.
I to have dcm, severe mitral regurgitation and left bundle branch block. I was diagnosed I'm Feb this year. Was a real shock. Ef 25%.
Mine was put down to infection, so myocarditis. I understand you can also get it from stress, pregnancy and substance abuse. I know two people who have it because of child birth. Mine was undiagnosed for 4 months saying it was just asthma. As soon as the hospital got hold of me the treatment had been amazing.
After 5 months I managed to get my ef up yo 38%, my valve has all but closed up and by bundle branch has all but disappeared. Which I'm very happy with.
Irs early days and I may still go up and down, but as you have, I'm heading in the correct direction for now.
I have added, with the advice of some of the people on this forum, ubiquinone, and carnitine to my list of supplements. I am no doctor but I stopped taking these for a month, had another scan and my ef had gone up no further. Still 38%.
I have started taking them again and will have a scan before Christmas I Hope. It will be interesting to see if I have further improvement and to what my consultant says re my little experiment.
I was under Papworth and assessed for a transplant, and at least a CRT device. They are now saying I may just need a defibrillator incase of cardiac arrest.
Thank you for your positive news, the more of us who share it on here the better I say. Its certainly helped me feel less alone and helped me to worry less know I'm.not on my own. I wish none of us needed to be on here, but we do and it certainly is a big help. So thank you all for your kind words and being able to share experiences.
Take care... xx
Excellent news! Good to hear. Make best possible use of your new cheerfulness
warm good wishes
Tavishock
Wishing you all the best with getting signed off from the transplant clinic Cherrelleford . You've been through a hell of a lot. Although your EF is still on the low side, it's such a positive sign that it has improved since your initial diagnosis 👌🏾
Hi, Cherrelleford,
I am happy for you that your EF has improved to 25%. It may have taken 2 years, but it likely shows that you have been doing something well. Good on you! 👍
I believe that we have to take our victories where we can, and your news sounds like a victory! You get to drop Warfarin for a new drug, which may be more beneficial for you. I surely hope so.
I’m confused regarding the heart transplant list. Do you mean that you are being placed on this list, or being taken off? I apologize for my confusion, but as I am getting older, I find myself getting more confused more often.
I hope that your health continues to improve over time, and that you have many more victories! ❤️🍁
Always good to read a lovely post with good news in, wish you all the best x
Hey all. Thank you for the love and support on this post. I hope it helps others seeing some positive news especially as it's what we all hope for.Have a great week xx
What wonderful news, best wishes for continuing improvements
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