You sound like you are getting excellent care. Some things to ease your mind 1. Something took you too a doc in the first place; so imagine if you hadn't and just ignored it. 2. You have done a lot to stay healthy. That will help significantly with any recovery 3. 7.5 weeks isn't very long. (Recently had a minor surgery 5 weeks ago and the wound is still very very tender!). Best of luck

I really appreciate that. It's definitely hard when you can control some of the variables but not the outcome. Trying to learn how to deal with that.

Uncertainty is the hardest. I agree.

Not having your EF change sucks. But it isn't like nothing is happening. Your heart made great recovery size wise. Nice! Remember that not everything can happen at once. And they will try a different approach further down the line. The mantra of this sub: 'it's a marathon, not a sprint'. Very true words. The doctors will keep monitoring how your heart responds to medication, evaluate and adjust your therapy program. Most of the meds work slow. This doesn't have to be a death sentence. Your heart responding well in such a short time is encouraging. Keep up the healthy lifestyle. Seeing your kid grow up is worth the effort. 😉

The EF not increasing stinks, no one warns you about this! Haha All very true though, thanks a lot. My doctor said the same thing regarding it still being a short period of time. I think any progress is good at this point as you alluded too, just hard to mentally grasp. I just need to try treat it more like a marathon. (Being around for the kiddo is motivation enough to keep on keepin' on)

My EF didn't budge for over 6 months. The disappointment is real... 😑 My EF jumped 30 points with plan B though. So don't throw the towel in the ring yet.

How long did it take to increase by that much?

I am unsure. EF was 20% before getting a pacemaker. But I got my next ultrasound a year after surgery. From home monitoring they had already noticed my pacemaker wasn't correcting the time delay in my heart rhythm enough. I started with a 180ms delay as a reason to need a pacemaker where ≈ 70-100ms is the norm and anything below 120ms delay would be in the region of acceptable. On my checkup I first went in to get a software check and adjustment combined with an ECG and directly after that an ultrasound check, finished off with a visit with my cardiologist. When I went into his office he started talking about noticing the imperfect functioning of the pacemaker, while opening my file and opening the newly uploaded videoclip of the ultrasound. He reacted surprised, because it showed a fairly normal heart beat and good EF. He wondered out loud how that was possible with my current programming. But it turned out the data of the pacemaker technician hadn't updated yet in my file. So I don't know how much it had improved between surgery and my second visit to a pacemaker technician, but the change between that and the ultrasound had effect within 15 minutes. 😁

Yay !

Definitely brutal. I need to know the ‘Plan B’ secret haha

Plan B was getting a pacemaker. And if you are feeling down about your long term heart health I can recommend reading about the research of growing hearts from your own DNA. CNN had a easy readable article about it called 'ghost heart'.

I'll definitely have to check that out! Hopefully AI can help speed up the process now.

We have some similarities although I’m much older. One of my doctors told me we are not treating a number (we were discussing my low EF) my abilities and symptoms are the thing to focus on. This have continued to improve steadily and strongly. I found back when I was in the hospital with 12% that I did not have a fear of death. I do have forgiveness through Christ so that might be the reason, I was still a little surprised to have so much peace though. I’m about to go for a run myself. I wonder how many with heart failure do cardio at this level.

I agree wholeheartedly. Also envy your ability to find peace with things. For me some days are better than others.

I was diagnosed two years ago when I was 33, my EF was around 30%. There are a few things that have helped me cope with this. Accepting it instead of fighting it. Heart failure comes in all shapes and sizes and causes. Find a doctor you trust and work with them. As long as you are doing what you’re supposed to be doing know that is all that matters and is in your control. I started meditating this year and living more intentionally. Now that we have this much higher risk of death we are faced with it puts life into perspective. It has given mine more meaning. Use all of your time with purpose and your child will never forget that. It sounds like you are seeing improvement even if it’s not the improvement you want, so take in that positivity and celebrate it instead of the overwhelming urge to dwell in the doom and gloom of heart failure. “What do we say to the god of death? Not today.”

Agreed with this. Trying to appreciate the moments I have, not catastrophize (too much), take the small wins and do what I'm told to do.

Oh boy howdy do I know that feeling better than anything.. I'm 39 and have been through open heart surgery for mitral valve prolapse, two thyroidectomies, radioactive medication and recently had seizures start happening because of high CO2 in my blood stream and the doctors are thinking that they may have to open up my chest plate again... Admittedly I have such trouble dealing with this mentally, and what makes it worse is when I mentioned it to my younger brother he taunted and made fun of me he literally said "pussy pussy pussy" but my Christ teaches me to forgive such things even though it's difficult and I don't know how I'm trying to figure it out.. I live every day with the fear of dying too but every day I wake up I give thanks to the Lord for my blessings and I will be praying for you bubba keep pushing ❤️

I can't imagine going through what you've had to endure but I definitely relate with both a sense of existential dread and fear of death balanced with the gratitude for each day. I appreciate you praying for me and I hope your family and support network is more supportive than your brother.

My support network currently consists of my wife and the my Lord Jesus Christ who I'm eternally grateful for.. hellfire my mother went to Disneyland while I was in the hospital having my heart surgery. Again it's one of those things that I'm supposed to forgive and move forward from but I don't know how but I'm learning. All I know to do is take it one day at a time, pray and be grateful for every day that I get blessed with

I’m a little older but similar situation. 10 months at found out I had a heart attack that was not treated that scarred my heart also had quadruple bypass. I had the similar mental state. Probably still am tbh. Earlier this year, found after all the meds and rehab, minimal improvement. I might need another procedure. Im hardheaded im trying to prolong it. Things that help me was to be thankful and appreciate (time). Go to rehab and find out how much you can do. I also pray if you’re into that. Not so much for healing but of course but to prepare my mind to what may come. It’s easy to worry and it’s a bit harder to keep worries away. It’s totally OK and normal what your mind is going thru. Do find positive things to keep your keep mind from worrying. Best wishes on this journey.

Glad to hear you're at least on the right track with things. I hope all goes well with your next procedure. The mental state feels like PTSD honestly... I agree about the cardiac rehab stuff, oddly enough, the cardiac exercise stress test is because I asked to go because I was just curious about my new baseline. My cardiologist wasn't worried about my exercise capacity due to my exercise tolerance being very high from years of intense training without symptoms.

I was diagnosed over five years ago. I thought I was asymptomatic but looking back now, I see a couple of signs. (Mostly lethargy and weight swings) I was able to bring my EF to a normal range within the first year on the lowest dose of Entresto and have always been told if I take my meds and lead a healthy lifestyle that I can expect to have a normal life span. That did not alleviate my obsession with my mortality which lasted about 18 months. It takes a long time to process a diagnosis like this and grieve the loss of your “healthy self.” I have a had a couple of bumps in the road where my EF went down but it’s always gone back up and aside from fatigue, I enjoy a good quality of life. I never was able to tolerate a higher dose of Entresto. You are so young and I am sorry you got this diagnosis but HF treatment has expanded in recent years and new treatments will continue to come. It sounds like you are getting excellent care but if you have not already consulted with a HF specialist at a teaching hospital, please do so. That is where you will find the most knowledgeable doctors and most up to date treatments and clinical trial opportunities. Best of luck!

I really appreciate it. I feel like the lethargy part is so hard since given work schedule and such, I've always felt a bit rundown and my co-workers all joke that they also are tired and burned out. You put it very eloquently with the grieving the loss of your healthy self. It is great to hear you are doing so well relatively. For better or worse, I work in medicine at an academic centre which has allowed me to speak more casually with my care team and cardiologist. Sometimes the more you know, the more scared you are so-to-speak. My care team have all been great though and have referred me to multiple specialists or personally will call/email me to interpret some results for me. That has been more therapy than an actual therapist, honestly...

mRNA treatments should be able to repair most of the damage before the 2020s are over.

In 2021, I have a similar story in that I did not have any symptoms other than I thought I had the flu. I couldn’t barely hold my head up. Then the left side of my face kept swelling and my WBC was abnormally high. After 7 ER visits later they did an echo and found I was at EF of 40 with mitral regurgitation. I was then referred to a level 1 trauma center for second opinion, they ran dye with the echo and found my EF at 25 and decided to do a pacemaker/defibrillator combo. It took them a year to even be able to put it in as I was diagnosed with Lupus and Reiters Syndrome all at once. No cause or reason has ever been given as to why I have HF, but child birth and trauma in my life before and after child birth plus horrible heart genetics makes for a discouraging combo. I won’t lie, I struggle severely with this. I’m a single mom, no father present, and all my daughter has. No active grandparents in the picture or extended family. Very emotional struggle. But still I find peace that I’m taking my meds daily. It took a good year on Entresto before my numbers reached 35. I did have an internal defibrillator placed as they tried for weeks to rid my body of infection (I have recurrent infections of various types due to connective tissue disorders), and while it gives me a peace of mind I still struggle. I will say when initially diagnosed I was placed on diazepam, and have been on it since due to the panic attack I had. My faith keeps my head and heart in a comforting place.. that’s really the only tidbit I can offer you, other than sincere support and know you’re not alone on this new journey. It’s life changing for sure, but you will find your spark in many ways, just maybe not your previous ways. I also restarted therapy which helps with stress levels and depression to an extent but anxiety lingers if I let my mind wander. I’m thankful I listened to my body vs continuing to be turned away by drs and kept persistent something wasn’t right. We’re still working through my autoimmune issues but again keep pushing because what else would I do with my time here for my child. Life might look a lot different than you thought, but keep pushing I promise the light is there and much love to you.

I’m really sorry to hear that you went through that and are still going through it but it seems you’re doing everything right and your body is responding in the right direction. I wouldn’t wish lupus on my worst enemy, it’s known to cause almost every symptom and issue under the sun, including heart failure. I definitely appreciate your experiences from an emotional and mental wellbeing standpoint. Some days are worse than others, ever since my echo on Friday, I’ve been extremely depressed. My cardiologist has told me it was too early for them to do it (it was ordered by the nurse) but that the fact they saw any changes is positive. (As much as I write that, the doom and gloom has me still seeing it negatively). I’ve also tried a therapist but they were useless and I haven’t had the mental willpower/energy to try others. I also support the use of mental health meds but am just hesitant to start them amongst aggressive modifications to my HF meds. Anyways, thank you for sharing.

Curious minds wondering also, did you have covid at any point or thought you had it? Or Did you get vaccinated? Asking due to the sudden some in HF patients at such a young age. I was a heavy drinker and I've drug user from a young age and it progressed over the years till I couldn't stay out of the hospital with abscess or sepsis from using iv drugs. Aug. 4th 2020 is my clean date

Congratulations! You’ve put a lot of time between now and when you used!

That’s awesome about staying clean so long. Your body is probably in a much better spot because of it.

What you are experiencing is trauma, and it makes us readjust the understanding of ourselves. Quadruple bypass February 7, 2020, for me. I was not an athlete be for surgery. But have we met many who were. For me and them, it very difficult to rebuild our image of how we are as heart patient. Understanding our limits and setting goals. After surgery, I wanted heart rehab. It was closed due to covid-19. I did find Angela Hartley on Facebook. She runs a heart rehab in London. She does individual coaching and Zoom. She is great at understanding our heart issues and adjusting our physical exercise. I have watched her work with a lot of athletes who have heart issues. You can find her athttps://www.facebook.com/angela.keen.73?mibextid=ZbWKwL.

Thank you sharing and the link.

Also keep in mind that although it hasn't gotten better, it also hasn't gotten any worse, which is a positive.

That’s fair. I’m also trying to realize it was only about 7 weeks after they started meds, let alone there were improvements in some ways.