After living with HF for over 2 years i was very very ill originally..Ef 15-20 % mitral valve regurgitations, severe swelling,difficulties breathing,sleeping and walking.heart swelled to 2 cm above normal size arteries were good likewise oxygen,no diabetes etc,...I made my will and prepared for the worst.
After 2nd visit to A+E they drained 10kg of water from me (yes you read that right) after that i could walk and achieve basic activities.Chief cardiologist (who i also saw privately )put me on entresto,bisoprolol,furosemide,epleronone and a cholesterol reducer which helps stop bits of plaque(if any) breaking off.
After 14 months- EF 47%(normal) mitral valve regurgitations normal, heart reduced in size to 5.6cm(doc tells me this is excellent) no problems doing normal activities and riding big motorbike in off road adventures.
I am writing this hopefully to show others there is hope even if you are very ill like i was and believe there is none.
Some things that personally helped a lot-
Please understand that the meds have to be slowly increased to test your tolerance so it may take over a year from diagnosis before they achieve their maximum effect.
Entresto (IMHO) is an excellent drug .Ask you cardiologist about it .if he doesnt want to put you on it why not ask why?
Seek a second opinion from a private cardiologist,the best you can find.Question all the meds and the doses
Cease salt on food and salty snacks or food altogether,If you are overweight get it off,if you smoke stop.Alchohol can interfere with the meds.I do drink but never more than 500ml of wine and not often and i stopped in the beginning.There is nothing more important than your health except those of your loved ones.
Walk a little or medium amount every day. Dont lift big heavy things,run up stairs or go running if you have HF. Your heart has to last you the rest of your life!
Many of the side effects people report on the forums disappeared (mostly) over time.they are def. worse at the beginning.
A very long and healthy life as possible to you all,Thank you for reading this
Nick
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hf54
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Thank you for your encouragement and inspiration.I was seriously depressed earlier this year after a heart failure diagnosis.It had not been diagnosed by GP who allowed me to fill up with fluid and stay that way . As a emergency at the hospital things improved and fluid was dispersed/lost via medication. I am slim and I do walk, do not drink or smoke.I will look up the meds you take. I only take Bisoprolol and Apixaban and one or two other things of lesser importance. which seems to work for keeping AF at bay and furosimide and Spirolactone to keep fluid at bay. I will need to look up you other meds.
hi what is your ejection fraction?My problems also begun at the gp,s 3 failed diagnoses and filled up with water -too slow to get on right meds and entresto "witheld' at the beginning .it can be a "wonder drug',it was for me -i have just heard from another PM the same .
No idea what my ejection fraction is. It has never been mentioned .I have a regular cardiologist but I am not due to see her until July next year which will be one year since last face to face appoint. What does entresto do for you?
Hi 10GC- often called a "wonder drug' it can help replace water tablets and importantly increase EF in patients with heart failure often returning to a very .i had a full range of tests privately which mostly finds the cause of your heart failure .entresto was incredibly beneficial for me combined with other meds. i can do most of the things i did before with some clear exceptions (e.g running)if you have money and are worried/depressed go part private(full respect if this is not an option) and you prefer to wait until july.discuss with cardiologist gp,s (IMHO) can do very little for you except prescribe meds your cardiologist has recommended.
What is 10GC and what is IMHO.?It has been said my tricuspid valve is inoperable and this has after many years given rise to the heart failure tog. with a few other heart issues.Most fortunately,( i am 83 going on 65) and in fairly good nick after a wretched year during which my GP.s neglect led to the heart failure diagnosis.Tricuspid surgery is done but not often on 'elderly' patients(even Tavis) and for some reasons it can be riskier than other valve ops. I also have a hole in the heart closure....gadget in place... and this may also interfere with any tricuspid valve clips. After seeing your post I have looked up Entresto and it looks good so I may go privately and see if a second opinion thinks it may be of benefit in my case.I welcome your comments .Posts here are often as valuable as a visit to the heart specialist .
10gc is 10 ginger cats and imho is in my humble opinion.if ejection fraction is lower than a certain level entresto can be prescribed -otherwise around 120 pounds a month privately.i think the patent runs out in about4-5 years but no generic equivalent available as its under patent.
Thanks Nick, for such a positive and inspiring post.
I am 6 months in on 'my journey' feel I have further to go and can echo everything you say, what I would add is as well as reducing salt where you can eat plenty of veg and fruit.
In regards to your exercise, gradually build it up and don't forget rest days.
also if you are offered heart rehab through the NHS take it, it can make a difference.
i totally agree with your above points thank you!I have used a leg press excercise machine.has helped as calf muscle=pump and feet futhest point from heart.light uses of leg press as private cardiologist told me that too big muscle means more blood needed to service muscle.
Oh what a lovely, heartwarming (forgive the pun), inspirational post. Thank you. I too take Entresto and what a difference it has made. My EF went from low 30s right up to 49% as a result of taking that drug. My mitral valve is leaky (moderately) and there is some ischaemia which makes my heart stiff so I am still symptomatic (breathlessness, fatigue and fluid retention) but Entresto has made a huge difference to the pumping action so am pleased to be taking it. Took a year to get to the highest dose due to blood pressure problems (low) but I now seem to tolerate it well and all I can say is its a quiet revolution. My cardiologist says that most HF patients will take it in 5 years or so, its had a great impact.
I'm glad that you finally had the help you needed and quite agree about the heart sparing tips - I try and exercise daily and i'm pleased to say my exercise tolerance is slowly creeping back up.
Thanks again - your story was a much needed boost!
I have recurrent pericarditis (and a few other conditions, sigh), cutting my sodium/salt intake was the most difficult and most successful 'lifestyle adjustment' I made. So I'm glad to read in your discussion starter that you cut the salt and it has been helpful for you
yes sunnie i havnt used salt on food for years.luckily i was v healthy before my heart problems this must have helped my recovery and condition thank you
Dear hf54
Thank you so much for an uplifting and inspiring post.
My thoughts are with you as you continue on your journey.
Thanks, hf54. I also had EF 15% in 2015 after Heart Failure. I was put on many meds but some of them I could not take. Cardio kept wanting to put in pacemaker. I didn't feel right about that at the time. Wanted to find other options instead, so got a new cardio and he put me on entresto in 2018. Was an immediate change. In 2020, went on diabetic medicine. Finally, in 2021 found another medicine eplerenone that I could take which started to bring my EF up to 25% and I am able to do more activities than before. Bisoprolol and furosemide I could not take. It's been trial and error where medicines are concern. It's great you have found what works for you. And you are right there is Hope with HF. You have to be responsible to know your body and what you can and can't do. Have a Blessed Date
Thanks for this encouraging post. Happy for you that your E-Fraction is good now and your health has improved so much. This gives me hope for my husband who has HF and an E-Fraction of 31 or 32 . He recently was started on Entresto and the other drug that starts with D used for diabetes and also heart failure, that we are hoping will improve his E-F. Also started on changing the diet and adding supplements like COQ10 etc for the heart. Planning to start an exercise program soon too, like using an exercise bike, etc. Just have to clear out a space to set up.
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