r/Heartfailure

Did anyone else finish their diagnosis conversation thinking, “Well, that was a weird call,” and only realize weeks later that their life had just taken a hard left? 💔📞

Five weeks ago, I answered my doctor expecting to hear that my echocardiogram looked great.

Instead, she opened with:

“Scott, I want to start by saying this isn’t necessarily a death sentence.”

And I thought… Well, that’s an unusual way to deliver good news. 😳

I heard the words.

I just didn’t understand them yet.

Now I’m beginning to grasp how serious heart failure can be.

Looking back, it feels like I was watching a car crash in slow motion… while somehow still asking if anyone wanted to stop for coffee. Never realizing I was the one in the car! 🚗💥☕️

Then suddenly, I had a handful of medications, a whole new collection of potential side effects, and a LifeVest.

Which brings me to the part where I’m literally sitting here in a very unglamorous bra… tethered to a powerful battery… and relying on the whole contraption to help keep me alive!

What is this, a medical device or the world’s least fun fashion accessory?! 😳🔋👙

And yes, I know it’s there to protect me. I’m grateful for that.

I’m also allowed to look down at myself and think, “How did I go from conquering the world to being dressed like a phone that needs charging?” 😂❤️‍🩹

Until that call, I thought of myself as a healthy 55-year-old who could take on just about anything. I was a big strong grown a$$ man that generally operated under the assumption that I was the main character in an action movie. 🌎🏃‍♂️🪂

Now, almost overnight, I feel fragile and I’m trying to make sense of a future I never expected.

I know recovery may be possible, and I’m holding on to that hope. 🙏

But I’m also trying to be realistic about the things I love that may never look the same again:

🍻 Late nights drinking with friends
🎶 Music festivals
🪂 Skydiving
🤿 Scuba diving
🏃‍♂️ Marathons
🏋️ Bodybuilding
⛰️ Climbing mountains

And the rest of my personal “activities that apparently require a much more cooperative heart” list…

Even a substantial recovery may change my life in ways I’m only beginning to understand.

That realization hit hard.

At 55, I already cherished the time I had. I just didn’t expect to start appreciating it while wearing a battery-powered bra and being terrified that it’s not charged. 🔋😅

I had no warning. No symptoms. I didn’t know the last time I did one of those things might be the last time it was safe for me to do it.

So I’m trying to take this one day at a time… keep some hope… and admit that this is frightening and sad, even when I can still make a joke about the outfit. ❤️‍🩹

If you’ve been through a diagnosis that turned your world upside down, how did you cope? What helped you find your footing again?

And sorry for the "trauma dump". I know my story may not be as difficult as many others here, and I really appreciate how positive and supportive this group is.

I’m just trying to figure out how to carry all of this… preferably with a little humor, a lot of hope, and a fully charged bra. 🙃🔋❤️

Just went had an echo done today and my EF is now at 50% up from 35% the last time I went to get an echo. Thank goodness

I’ve been trying for sexual activity and I can’t achieve orgasm. Whether I’m solo or with my partner, same thing happens. I get out of breath. My blood pressure gets out of control. I have to sit up to breathe. Snot drips out of my nose. I’m so sexually frustrated I can’t stand it. I don’t know what to do if anything can help at all. Please help.

I live in the UK, and was a keen runner, with a 1:42:00 half and 4:00:00 full marathon pace.

I had an OHCA Feb 2026, spent 2 weeks in a coma, 7 weeks total in hospital, and left with an ICD and 32% EF heart failure.

Now im about 35% EF, and feeling fine. I can walk 10-11 miles in 3 hours easily enough, and regularly walk 5 miles home from work.

I haven't started running again, but I was hoping to get the sign off to start (gently) again in a couple weeks when I see my cardiologist next.

Here's the dilemma:

I just got selected to be in the Paris Marathon 2027. I have 3 days to purchase it or it'll be given away.

Is it really stupid to go for it? There is a cut off time of 6 hours on the day so I can't just walk it all (at current pace anyway).

sure , 35% is a low and alarming number still and i'm not out of the woods yet, it according to my cardiologist, surprised him , and saved me the need of a ICD, as long as i keep my sht together, i should be fine according to him, and yes he did say a cuss word. funny guy tbh.

Mine is a long story. As most CHD warriors’ of that age are. I have CC-TGA, ASD & VSD (surgically corrected), Pulmonary Stenosis, pulmonary conduit, pacemaker, mechanical valve stemming from endocarditis at age 20, and a cardiomem device. That’s the shortest I can make that, lol. In May of this year I had a cardiac cath (par for the course), during which is was found that my pulmonary conduit has narrowed to 80%. They don’t want to balloon or replace it because my right ventricle is too weak to handle the sudden uptick in pressure. So my only option is transplant at this point. I’m currently on a GLP-1 to try to get down in the optimal weight range for that and with hopes that it’ll actually help me feel better for at least a little bit before being evaluated for transplant. My question is about pre transplant stuff. Those that have been through it, what did you ask before or wish you had asked before? I’m trying to gather as much information as I can so I can ask questions at my cardiologist visit in a week. If you are in the same boat. What are you asking your cardiac team? Any and all suggestions are appreciated.

I had a visit with my cardiologist today. He informed me that I have to wear the vest for 3 months from today. I am a bit pissed because everything I have read talks about 3 months total. I’ve already been wearing it 7 weeks and was really looking forward to 5 more and being done.

got the diagnosis this summer. still learning the words. meds from the cardiologist, salt watch, daily weight, no “i’ll just google a stack.” family keeps sending supplement links like that’s the plan.

i already bought liquid cod liver oil from carlson labs before the appointment because someone said omega-3. it’s sitting unopened. i’m not starting it. too much vitamin a and d talk and i don’t know how that sits with the meds.

what did your doctor say about fish oil or cod liver oil on top of the prescribed stuff? and if they said no, was it the vitamin a or the blood-thinning thing? also how soon did they want you back for labs so you’re not guessing at home? following the clinic first. that’s it.

Ahoy folks.

From my understanding I'm on the Young side for this kind of issue.

Its been extremely isolating being this young and otherwise extremely healthy but a medical condition where all advise is aimed at people with higher frailty scores

I will take a Xanax or lorazepam as needed which my doc says is fine. Cardiologist says no to alcohol or thc but my regular doc says once in a while and in moderation is ok. Curious as to what others say.

It’s 2 yrs since my hospitalization and l lift 5x a week will swim 2 k yards and usually go for a 3-5 mile hike a day to get my steps in.

EF went from <10% to 45-50% in six months and has been holding steady.

I was supposed to have my procedure on Friday, but I was having issues with shortness of breath and dizziness. I went in to see my heart failure specialist today to discuss my issues and the procedure.

She asked about my liquid intake today, and I said im holding my limited water because I had to drink a gallon of prep solution and she was surprised I had that style of prep. Here the solution had 5 Grams of sodium.

If i had gone forward with that, I would have been retaining water for a week until I could get it out. Be careful with your health procedures and meds.

So I have an EF of 46% my cardiologist first prescribed me with Lisinopril 2.5mg I took it for about a month but I honestly didn’t feel any better taking it so I stopped. After I stopped taking it around 6 months passed and I my EF didn’t move from 46% but I feel great in comparison to when I was on the meds. I should also note that I have lost 20lbs since then. Now he has given me 3.125mg of Carvedilol I wanted to know if I keep taking these meds am I on the right track to having a higher EF?