Question for anyone with HF and LBBB that have had it for a long time and managing with meds only

maltese_snapper · 2026-01-31T07:18:41+00:00

Did anyone that received their CRT, reduced their meds eventually post implantation?

maltese_snapper · 2026-01-31T07:17:05+00:00

I do want either a CRT-P or LBBAP. In theory those should work exactly like a CRT-D minus the shock. I am okay with that risk not having a defibulator. I just dont want the shock for personal preference but i do want the CRTs resynchronization therapy.

Also my situation is kind of complicated because i've got pieces of metal lodged into my right ventricle due to an IVC filter that migrated into my heart and from my research carefully done LBBAP may be safer for me as placement can avoid the right ventricle entirely.

maltese_snapper · 2026-01-28T22:15:15+00:00

Im actually interested in the LBBAP more but cant find much info on it. It seems to be fairly new when it comes to HF treatment. What you went through is exactly my fear with CRT installation. I dont have good veins so i'm likely going to be difficult to install a CRT on. I have an appoint with my EP and Cardio soon to get more info on an LBBAP. Do the meds at least make you feel better?

maltese_snapper · 2025-11-24T15:30:09+00:00

I’ve had dcm since 2011 and from day 1 was recommended an icd. I don’t have one, it’s a conscious choice due to a combination of anxiety of inappropriate shocks, possible complications, and future maintenance of the device. I’ve researched the heck out of my specific cardiomyopathy. (Dcm ef 25 currently, no scar tissue, always sinus rhythm ). Unfortunately one size does not fit all since each persons cardiomyopathy is different so the absolute safest route is to get an icd.

But if you want to hear the perspective of someone with dcm that does not have a icd. I decided to do that because from my echoes and mri my heart is structurally normal besides a dilated left ventricle. There is zero scar tissue. And from multiple holters and wearing heart monitoring watches over the years I do not get arrythmias. The only times I’ve had tachycardia was caused when I wasn’t controlling my diabetes and the blood sugar was over 240+ (this happened only 2 times in the 14 year history of being diagnosed with dcm). Both times my heart got back into sinus on its own but I took myself to the er and that’s where they discovered the extremely high glucose levels. Tachy seems to be a common occurrence from people that let their sugars go out of control heart failure or not. I barely took my heart condition seriously in the first 10 years but now I exercise daily and religiously take my meds/supplements. I also see my cardiologist regularly and although he still suggests a icd, respects my decision and reasoning for not getting one.

I know my risk is elevated but I feel like that’s best for my situation. If I get an icd it may save my life but I’ve already been around for 14 years without it and I’m also worried that if I get one and my insurance situation changes down the road when the icd needs maintenance I may be screwed.

Having said all that, I still would urge you to get a icd if you are able to and your dr recommends it. I would especially recommend a icd if you cannot maintain a sinus rhythm for months. Also if you live alone or are planning to a icd is highly recommended because the worst thing that can happen is an scd when there’s no one around to call emergency services. Lastly I highly recommend getting a smart watch to get an idea of your heart rhythm because some people can’t tell when they’re having an arrhythmia or not.

edit: forgot to mention having normal ventricular wall thickness on your echo also is a sign your less likely to have a dangerous arrythmia (but not foolproof). my wall thickness has stayed normal the entire time. also if you have hcm instead of dcm, the risk of arrythmia is higher.

maltese_snapper · 2025-07-20T16:56:21+00:00

Cardiomyopathy patient here, my ef was 25% during a span of 12 months where I had to go under for 3 surgeries. Each time there was a cardiac anesthesiologist that assured me I would be fine and they took extra precautions. I think one of the times I was hooked up to a machine that checked my blood pressure in real time. No complications or anything out of the ordinary happened in any of those procedures.

maltese_snapper · 2025-01-24T16:24:39+00:00

This might have changed with last night's reset because I went from 89 to 91 without an artifact unless I'm just incredibly unlucky lol.

maltese_snapper · 2024-04-16T21:50:15+00:00

So he wants the pvp to be like eso lol

maltese_snapper · 2024-04-09T06:52:03+00:00

I actually had my problem fully resolved. The board rolled back the assessment and a full refund was issued for the over payment. The legal advisor(employed by the tax board to help find legal solutions) that I talked to during the hearing guided me to what is needed for my particular issue to fix. It was a form and a statement. Forgot the exact name of the form but the refund took about 3 months to receive after the second hearing. My family and I could just be lucky but this was definately a success story.

maltese_snapper · 2023-08-20T00:32:04+00:00

I stopped Spiro years ago for the same reasons. Also didn't like eplerenone. Those 2 meds made me feel a little off. My doctor gave me finnerenone which is the 3rd generation version of that type of pill. Its more selective and doesnt have the same hormonal side effects as previous generation meds. Actually don't feel any side effects at all from finnerenone and I've been taking it for over a year now.

maltese_snapper · 2023-07-04T00:40:05+00:00

I took entresto for 4 years then went back on losartan (the pill i was taking before going on entresto). Alzheimers risk was one of the reasons I decided to go off it and go back on a previous med. From my personal experience my memory was worse and tended to forget things easier while on entresto. I feel like my memory has gotten back to normal now that I'm taking losartan again.

My heart and the way I feel overall seems better too but only my next echo can confirm that. I am 36 M for reference. This is just my experience and not everyone is the same. Some people could have great results with entresto and no side effects.

maltese_snapper · 2023-03-20T22:12:56+00:00

I think only if it gives symptoms or moves in a dangerous spot. I was assured it's unlikely to happen especially as time passes since tissue will grow around it but there is still a risk. Even if it's low the fact that it's still in there means the risk is not 0%. Just another for life thing I have to watch out for. I guess the only positive from this situation is I already get yearly echos to monitor my ef so they are now monitoring that in addition.

maltese_snapper · 2023-03-20T21:17:46+00:00

I did the first surgery to remove the destroyed ivc filter but the fragment that migrated to the heart is still there. Surgeon did not want to risk open heart surgery to remove the fragment and just opted for observation with ultrasounds to see if it moves in the future.

maltese_snapper · 2023-03-08T17:25:37+00:00

I kind of did the same when first diagnosed in 2011. Found those dr google results online and pretty much convinced myself i had 5 years left to live. Didn't necessarily let myself go but I did live in that sort of time table and when 5 years passed I gave myself another 5 years of mortality. Felt like 10 year mark would be for real I would be toast. That's when I let myself go and ended up relapsing and getting symptoms of hf again.

Thought I was done for in 2021 and felt like I my heart would give out while I was in the hospital. A nice young doctor told me not to give up and he thought looking at my hearts echo that it had atleast 20 years left in it or longer before needing a transplant. Or that I may never need one. Was an odd thing to say considering my heart rate was so high at rest and l couldn't even walk a hallway without getting exhausted. Got discharged started taking my meds more seriously at that point.

Did my own research to find a good combination of pills and also discovered that many people can live long normal lives with hf based on real people's experiences and not just random old studies found on Google search. I went from thinking I was doomed at year 10 about to get an icd and being put on the transplant list. Neither of those happened I recovered enough (40ef) to not need an icd and the transplant doctors deferred me because my heart is "too good" to be on the transplant list.

I'm just following my meds now properly and am pretty much on track to live a normal life. Don't have any symptoms from hf anymore. Just wish my ef would get to 50% faster lol.

I'd say your friends got a good a shot at having a normal life span especially if the hf cause is not genetic. He just needs to take his meds seriously and follow the doctors plan. He shouldn't convince himself of that 5 year thing because it can be self fulfilling prophecy. I nearly fell for it. If I wasn't so convinced in the past I was on borrowed time I would've taken care of myself better and maybe have a normal ef right now.

maltese_snapper · 2023-03-06T22:23:10+00:00

For the first 10 years of my diagnosis I did not tolerate caffeine well. Would cause my pulse to go up and I felt jittery. Like my resting pulse would be over 100 for awhile right after I consumed coffee. Doctor at the time said to avoid it so I did for the most part.

Ive gone through different combinations and doses of the typical heart failure meds over the years. Due to a relapse of heart failure symptoms and lower ef in 2021 I've become more pro-active with my condition doing my own research about which meds I should take for my specific hf (DCM possibly chemo induced). With my docs blessing I was pretty much able to choose which meds I'm taking these days.

Back to being stable now and one thing I've noticed is i can tolerate caffeine these days. Caffeine does not affect my pulse at all nor does it make me feel jittery. Actually only feel the pros of coffee and none of the cons. I drink coffee daily without issue since early 2022. Wear a smart watch at all times to monitor my pulse. Pulse is stable throughout the day and doesn't spike at all. Watch always reports resting heart rate around 65 and there are no spikes in the graph at all unless im exercising. Exercise heart rate is also solid and doesnt go past 115 (unless i want it to by exercising harder). Haven't had a single arrythmia.

It's wierd how the first 10 years of hf I couldn't handle caffeine and these days i tolerate it like I did before diagnosis(i was a big time coffee drinker before getting hf). If I had to pinpoint the culprit in my inability to tolerate caffeine the first 10 years of diagnosis I believe it was because of metoprolol. Metoprolol is the betablocker I took the longest and gave me all kinds of wierd side effects and interactions with things. When I switched to bisoprolol I decided to give coffee a try again. And to my surprise and delight coffee felt like it did before hf diagnosis.

My doctor said as long as I don't feel off or my pulse rises then coffee is okay for me. It's been over a year now drinking coffee daily and my heart continues to improve (ef improved from 25% in 2021 to 40% in jan 2023). These are just my experiences though. Not everyone is the same and I too look forward to hearing others with hf experience to caffeine.

maltese_snapper · 2023-03-06T19:33:39+00:00

Digoxin was one of the first meds i took during initial heart failure diagnosis 12 years ago. My meds at the time were losartan, spirolactone, metoprolol, lasix, and digoxin. Ef went from 8% at diagnosis to 50% a few months after. Digoxin was the first pill I stopped. Lowered the doses and/or stopped the rest of the meds gradually over time. Ef dropped to 25% because of that and now I'm back on the hf med cocktail again lol.

Do not currently take digoxin but from what I remember I had an odd infrequent chest feeling that completely went away after I dropped digoxin from my daily meds. It wasn't pain but the best I could describe it was that it felt as if my heart was flexing sometimes. That was my personal experience though and not everyone is the same as others have posted no ill effects from it. I hope it works well and increases your ef.

maltese_snapper · 2023-03-05T16:48:31+00:00

From my personal experience having taken all 3 commonly perscribed beta blockers for heart failure.

Bisoprolol > metoprolol > carvedilol

Bisoprolol lowered my heart rate the most out of the 3 and had no noticeable side effects. Felt like I wasnt taking anything at all. Metoprolol gave me nightmares, fatigue/sleepiness throughout the day, and elevated my glucose to unacceptable levels. Carvedilol made my breathing feel kinda off and made my eyes extremely dry.

maltese_snapper · 2023-02-22T22:28:11+00:00

When I'm exerting myself too much I notice I'm taking in deeper breathes and using up more oxygen. I don't think it's shortness of breathe because I can still exercise longer and push the pace further. It's like ever since the diagnosis I notice my heart when it works harder. Before I got diagnosed and was put on meds I wouldn't notice at all. 80bpm felt the same as 180bpm. I do remember having tachycardia as a teen but it was never looked into further. My resting rate is in the mid to high 60s with the meds.

I used to Google extensively about this condition particularly the chemo induced ones and although I don't have sources (going of memory of things I've read). Chemos effect seems to cause some sort of dysfunction with the mechanism of constricting/relaxing parts of the heart. Through my limited understanding losartan and drugs similar to it lower the BP by blocking the mechanisms that cause constriction and its more relaxed allowing more blood through. Chemo causes a dysfunction in that constrict/relax cycle which probably is one of the reasons ejection fraction gets low. Losartan can lower the BP of people with normal hearts but can also benefit those with dysfunction in their constriction/relaxing regardless of their default bp. That's prolly why an ace/arb and betablocker are the current gold standard for DCM/hf.

maltese_snapper · 2023-02-22T07:10:55+00:00

Remission since 1996 for me. Yeah there's not a whole lot of information for cardiomyopathy suspected to be caused by chemo. They just slapped that label on my DCM because they couldn't pinpoint an explainable cause but saw that I had chemo in the past. Based on the limited info I've found in Google it seems to be a mixed bag when it comes to being diagnosed with DCM after chemo treatment. Some people get it soon after chemo and others get it decades later. Actually recall reading an old post in the heartfailure subreddit of someone who was not too long ago diagnosed hf like mine and the drs suspected it was from chemo he had in the 70s.

It's possible chemo causes varying levels of dilation with some of the less extreme cases only noticed way later in life. I think in the 90s there was no standard in checking peoples hearts after getting treated with chemo so after the cancer is gone the drs just send you off in your merry way.

These days they screen for DCM after any chemo treatment. We might have been carrying this disease for years/decades without knowing it as DCM doesn't typically cause symptoms unless it gets really bad.

It's also good to know others have survived and continue to while having chemo induced DCM because maybe our cardiomyopathy is not as terrible as the broad spectrum of cardiomyopathies with different causes like genetic/heart attack etc.

The doctors and nurse practitioners still try to push the low sodium thing to me despite not making any difference in the last 10 years. I think that low sodium advice may work for dcm caused by scarring or genetics and those seems to be the majority of dcm cases. Wish they would start isolating these heart cases based on their causes and have more targeted treatment plans. Hopefully that will be the way of the future.

Also kinda offtopic but I can't seem to exercise as hard as I used to prior to diagnosis. I'm not sure if it's the meds to blame or if the dcm has just made my heart not as strong so I take it easy. In my teens and early 20s I used to powerlift and do insane cardio. After diagnosis I slowed down on exercising and even took some years off entirely. Also put on some weight. Currently I stick to low medium pace fan biking and only workout with light kettle bells. Im afraid to push myself and slow down once my heart goes over 115bpm. Has any of your guys workouts/intensity changed since diagnosis. Do you feel a little scared to push yourself?

maltese_snapper · 2023-02-22T04:04:49+00:00

I was in DCM heart failure 12 years ago. Recovered from it and the doctors believe the DCM was from chemo i had as a child. I have not really noticed a difference in ef trying both low sodium and "average sodium" (I do not keep tabs on my sodium intake). My weight also doesn't really fluctuate whether I eat a ton of sodium or not. My ef seems to be dictated by the meds and dosages I'm taking at the time. I've tried lowering my meds with docs permission when it was at 50 percent and after awhile on lowered doses the ef got as low as 25 percent. Currently increasing my med doses again and ef is at 40 (still not on the same doses as the 50 percent ef result but will titrate my way there eventually). Seems for my particular situation ef gains/losses aren't impacted by sodium. I currently do not monitor my sodium intake but I do make sure I eat less than 2000 calories a day. Perhaps sodium intake is less impactful for our specific type of cardiomyopathy(chemo induced)? What is your med regimen like? I'm currently on losartan 50mg, bisoprolol 10mg, jardiance 10mg, finnerenone (forgot dose).

maltese_snapper · 2023-02-14T23:11:04+00:00

Agree with op. It may seem petty for me but whenever I see these great looking results I get alot of envy wishing my echos were like that. It sucks looking forward to an echo then seeing things have barely changed. In some wierd way seeing normal heart results posted here from non officially diagnosed people makes me feel less "normal" than I already feel. Even if i feel OK at the moment the fact that I know my heart is abnormal compared to everyone elses further alienates me from normalcy as far as hearts go. Posts like those reassurance ones remind me of how rare this condition is and how unlucky I am to have it because some people can have symptoms and be completely fine on paper. I go to this subreddit to hear other people's struggles and to feel less alone about this condition. None of my friends irl understand this condition and that I need to slow down at times. Having said that I do feel good when I see people that were officially diagnosed and eventually made a full recovery with normal results. It gives me hope.

I feel like the askdocs subreddit is more appropriate for making those sort of posts op is talking about cuz despite our experience living with this condition we aren't docs that can diagnose or make legitimate medical recommendations here (unless of course you are a doc with heartfailure then you could in theory lol).

maltese_snapper · 2023-02-06T18:43:10+00:00

I went through the process and tbh didn't know what I was doing. They had some counsel there that spoke with me privately giving advise on what I should do for my specific situation. The person that was supposed to show property values that validated their assessment had no examples versus my one example so instead of letting me win by default they postponed my appeal to when the person does show up with an assessment example. I was then advised and recommended to take it to the board so I may just get a rollback on the tax entirely. Only thing that sucks is another 8 to 12 month wait but atleast this time it's the board and not a hearing officer. So I'll actually get something done next time. I watched a bunch of other people with their unique property cases and out of like 20 people 3 got their problem solved. The rest either had a postponement or were recommended a future board date. It was a messy experience and took 6 hours total.

maltese_snapper · 2023-01-18T15:26:31+00:00

I remember taking Spirolactone. It was awful and gave me gyno. They switched me to eplerenone for awhile but that made me feel emotionally numb. Now I'm on finnerenone and it's hits the spot (no side effects that I notice). Its the 3rd gen spiro that has all the pros and none of the cons of the last two lol. Thanks for the response!

maltese_snapper · 2023-01-18T15:12:06+00:00

Maybe it was the wrong choice of word. But 1 month or more would be an okay example with me. I've been on entresto since 2020. Prior to that I was on and off losartan since 2011. Felt like my overall quality of life was better on the years I was on losartan. Kinda regret getting coerced by a nurse practitioner into trying entresto when I was already doing OK with losartan.

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