Something called heart failure

@majeedmerzah: I don’t know if you live in the US or another country, but I want you to have the best medical cardioligist care available. My Mayo Connect peers will surely have suggestions to help you. In the meantime, I will keep you in my thoughts for finding a protocol or treatment that will allow all your positive feelings to surface. The more realistic information you can absorb may beat down that nasty “fear”! Knowledge is power!!
Many of us who have found Mayo Connect have been told we have terminal diseases (I have stage 4 cancer) but found we can pursue treatments, drugs, medical procedures, clinical trials, etc. to give us more time here. Best to you..

The heart doesn't really 'fail'. It just weakens, or rather it's left ventricular walls thicken and get stiff and can't contract with the usual force...AND...volume. The result is what you experienced up to your diagnosis.
There are treatments. Some work for some, others work for others. Often it's a valvular problem, say a prolapsed mitral valve, or it might be undetected arrhythmia (usually for a few years).
https://www.ottawaheart.ca/sites/default/files/documents/heart-failure-a-guide-for-patients-and-garegivers-2024.pdf
https://www.mayoclinic.org/diseases-conditions/heart-failure/symptoms-causes/syc-20373142

Hi,
It took a while for me to come to terms with a terminal diagnosis. Yes I thought the world owed me something better, but no, this is life, here one moment possibly gone the next. What I do is concentrate on each day I wake never worrying too much about tomorrow, if I don't wake it is all over anyway. We all die sooner or later so making the best of the time we can graspe is the best we can do. I make sure I fill each day with as much as I can do not wanting to leave anything undone. Death can be sudden and unexpected from may different causes, I don't have the time to be thinking of them. Here and now this very moment is my focus. I sat around waiting for death for a while and all it did was consume me throwing me into depression. I take a possitive attitude, I'm alive now get on with life while I have the chance. I was supposed to be dead 3 years ago but the message never go through! Live for today while you can. I could die from a road accident while waiting for my terminal disease to get me, I'm not waiting, too much to do and not enough time to ponder the odds.
Feel better.
Cheers

Thank you for your words. I live in Canada, unfortunately I cannot travel because of my health condition. Also, I live alone. There is no one who can help me or come with me on the treatment journey. I am confined to my home and do not go out anywhere for fear of what I heard and what the doctors told me. If I do not travel because of my illness, my fear will kill me.

My fear is not of death, perhaps death will be a salvation. My fear is that I will die before seeing my family, my mother whom I have not seen for 11 years, my father and my brothers. My fear is of sadness that might break my mother’s heart and cause grief to my family. I have never remembered a day that I have hurt or caused any harm to a person, so I do not want to make sad the people who are dearest to my heart. I know that this is life, there is no such thing as eternity, but the fear remains a fear of the unknown.

I don't know if my words will help.
When I have had concerning health issues (or any problem), I have defended myself by learning as much as I can about the issue. It gives me some sense of control. Today with the Internet, without leaving home, one can find out many things in any area. Just use credible sources (organization, intuitions like Mayo). Little by little one begins to understand.
Perhaps you can locate other institutions and have your records sent there for their review. When I had abnormal CT scans I self-referred to Mayo. They reviewed my scans and then called me to offer an appointment. I didn't have to leave home until I had the appointment. Mayo also offers a lot of assistance to people travelling alone. There is always a volunteer with a wheelchair to take one around to appointments

My local Pulmonologist wanted to treat me, but I read my scan reports and knew I was dealing with lung cancer, and that was not her area of expertise. It is good to have another opinion. Realize Specialists have subspecialties.
Wishing the best for you

@majeedmerzah
As you know we can only pass on our experiences and hopefully provide some inspiration.

First, I was diagnosed with heart failure (HF) back in January of 2001. Does that tell you something.

Second the term heart failure is terrible! It should be called Reduced Heart Function. The diagnosis of heart failure does not mean you are dying and heart has failed it just means heart is not pumping the amount of blood that is normal.

What is your ejection fraction? This is more of a diagnosis of how well the heart is working. How is your blood pressure? A known cause of causing heart to enlarge which can bring on HF if not reduced. Do you know a lot of pregnant women developed HF during pregnancy. Stress on heart, BP, etc. and return to normal after delivery. Not me as a medical professional but what my HF doctors and cardiologist tell me.

Now you asked about medications and treatments. YES very good medications to treat HF. With treatments. Let me give you my experience with this.
2001 diagnosed with Cardiomyopathy Heart Failure. What does that mean. It measn my heart catherization revealed I do not have cardiovascular disease as cause but most like a virus, infection, etc.

When I got to 30% EF and was told needed ICD I went to Mayo Jacksonville in 2006. There I got second opinion from electrophysiologist and heart failure specialist. The recommended both a ICD and a pacemaker. They also wanted to change my medications. I changed my medical care to Mayo Jacksonville and got a ICD/Pacemaker implanted in 2006. I am no on my 3rd pacemaker.

The medications I am on are entresto and carvididol. Now I EF with my ICD/Pacemaker and my new mediacation stopped my EF from getting any lower and has been the same for the last 15 years. Lifestyle? I exercise 6 days a week or 2 hours. I do Sprint Triathlons. I do not have any medical exercise restrictions excpect to realize I am 78 (yes I am 78 and you are 35) so do not go a max but moderate rate.

So I now what you are feeling. I said same thing to myself when the said heart failure. Just know it is just a terrible name for reduced heart function. Heart failure should be used as cause of death only.

MCC offers a private message ability. Just click on my @ and you will see send private message. I would be glad to go over more in depth of my experience with heart failure, diagnoses, treatments, and questions you should asked your medical providers.

So here is a MCC poster that was diagnosed with heart failure in 2001 and is doing Sprint Triathlons in 2025. Does that give you any sense of inspiration?

I have lost an aunt and her son to heart failure in there 30. They passed away 40 years ago. I do know they have learned a lot since then. I will get a second opinion. Go to a learning or teaching clinic and hospital.
Do research for yourself. There are a number of websites that are from different teaching clinics and hospitals that will have information for you. Go to Google scholar and see what is there.
I was told alcohol made my family problem worse.
I wish you the best but now it’s time to get your boxing gloves on and fight for it
Wishing you the best

Thank you all. You are true heroes.

Compared to each and every one of you, I feel like nothing. Your experiences are profound, your battles are unique—but you are the true victors.
Life is a story—sometimes beautiful, sometimes ordinary—and we choose how to color it.
In my life, I've considered many people friends. But when I needed help, their doors were closed. They were afraid—afraid that I would ask for help.
A short time ago, I found out I was sick. With fear, anxiety, and isolation—away from my family—I went to the hospital because I couldn't breathe. I waited for nearly two hours in the emergency room, nearly dying. When they asked for a blood test because I said I had a phobia, I was beaten by a nurse and strapped to the bed.
To each and every one of you, I say from the bottom of my heart: I wish you a better life. A long life, filled with dignity and peace.
These words are for you. I stand before you with respect.
Majeed

Hi,
I put my needs before anyone else as they don't have a death sentance hanging over their heads in the way I do. I'm fortunate having succomed and been revived before. It has given me an insight as to what maybe ahead for me. I understand the fear of not knowing all to well. I have fought for 13 years to find out what was wrong with me, knowing the answer negated some the fear for me.
So I'm going to die, aren't we all!
Fear drove me to the brink several times until I woke up to the realisation this is my life, please myself not everyone else. That does not mean I don't care what I'm doing and how it can impact others around me, but in order for me to exist I do what I need to do. If I don't then I succome and those about me will feel the pain regardless. I can't win either way so I don't try too much.
Would anyone else wish for me to suffer to accomodate them and not upset them, I don't think so, I hope not!
I push my health and body beyond what is reasonable, I can't stop, I have to to keep my sanity. I'm comfortable with what I have to do and where I'm at, being as comfortable as possible is my only requirement, those around me that understand, support me, other I tend not to associate with much.
It is about me for me not me for them.
I have a medical team ready to support me when I need help but knowing I'm incurable and untreatable has given me a new lease on life, I don't have to fear the unknown because it is now known, time is the only issue unresolved and that will resolve itself in time.
I'm challenging my body everyday, thrashing it physically to find the limit. I'm not sure if I do this hopeful of death or to prove in some way I'm not at deaths door. For whatever reason it certainly has a kick back, but yet I persist. For some unknown reason I seem powerless to stop doing it, possibly because I feel great in the moment until the pain and some suffering kicks in. That's how I cope and it is likely doing me no good medically but emotionally it does wonders for me.
Take care.
Cheers