Bundle branch & HF - 48yrs old

[Attacus]

Hello,

I'm 48, didn't think I'd be writing on here so soon but it's good to read your stories & experiences, albeit overwhelming at times.

Started with palpitations and some noticeable breathlessness. ECG diagnosed bundle branch block. The stress from that prognosis ended me up in A&E from being told. Then found out heart was swollen & only working at 20% (50-60% is normal)

Now on various drugs, including bisoperol & Entresto. Still have palpitations. Waiting for an MRI to give more results. Not overweight. Recent bloods show a BNP of over 2000, they were half this (still high) before taking the meds - any ideas ?

Thanks

Richard

[LSCE]

Hello, sorry to hear of your health issues. I don't have any experience of your condition. I do know the new treatments for HF can be very effective. Some meds like beta blockers can cause an elevated BNP or so I've read. Importantly, are you any better on the medication. Have a chat with the BHF nurses, they might help. I hope there might be others on the forum who can offer you some advice. wishing you well.

[Attacus in reply to LSCE]

Thank you, it's all early days but lots of help out there. Thanks for your support & info. Good to know it could be the betas raising it further. Best 🙂

[Alixia]

has anyone in your family suffered from heart issues?

[Attacus in reply to Alixia]

There is some history but different parts of heart & not as young 🙂

[Deejay62]

Hi mine is 23% as of a yr ago. It went up from 10%. My pro bmp whatever it’s called is 2111. I thought that always depends on how low your heart function is and I’ve never heard of it being caused by meds. I take bisoprolol, entresto, spironolactone, dapagliflozin, Bumetanide and edoxaban, as a cocktail.

I also have dilated cardiomyopathy which is a progression to H/F and pulmonary hypertension which is another progression, so I assumed mine is expected to be high.

I know I have regular blood tests because my kidney function is quite low also but since coming off warfarin it as climbed up a little.

[Attacus in reply to Deejay62]

Wow 10% ! But has doubled in a year. That's great news ! How are you ? How have you increased it to 23% just on meds or physio or diet or what ? How old are you ? I'm pretty much on the same meds too. Do you feel better? Have they given you underlying cause ? So many questions. Good luck & thanks

[Deejay62 in reply to Attacus]

No not in a year about 6 yrs ago when I went to 10% and trialed entresto because it was that or transplant, and I found I felt a lot better. I went up over time until last year’s echo showed I was 23%. I can’t compare myself to you or anyone. We all medically are different. I’ve read a lot of people on here have been 10% and climbed out of H/F, but still having to take their meds. I try to take my meds and get on with my life the best I can. I went into H/F over 20 yrs ago. I’m heading to 63. Maybe that’s why I’ve accepted my illness and it’s progression

I feel odd compared to people on here because the only time I feel anxious is when I have a cold and have problems breathing. I can’t walk far without stopping because I can’t breathe properly because of fluid and atrial fibrillation, but even that doesn’t stop me

[Attacus in reply to Deejay62]

You're right, we're all medically different I guess. But 20yrs ago ! So 42 .. I thought I was relatively young ! Anxiety has a lot to do with things I guess. Nobody likes to feel worry of breathlessness but even before HF that's a symptom of a cold. Try not to worry, you're doing great, and you're one of the original Entresto trials. Amazing. All the best 🙂

[Deejay62 in reply to Attacus]

You’re still young. Try not to worry about the numbers, let the professionals do that. Keep fighting on. You have a lot of living to do. All the best.

[am1875 in reply to Deejay62]

Hi Dee. You mentioned a heart transplant. Did you pursue that and are you familiar with an LVAD? Thank you for sharing ?

[Deejay62 in reply to am1875]

At the time my EF had dropped to 10% and they weren’t sure if it would go back up so I was in the final stage. The only other thing for me would be transplant, but trialling Entresto in the meantime helped a lot along with the other HF drugs. 2023 it was 23%. But now I have arrhythmia problems and will be having an ablation to help my heart pump a bit more. With me it’s always something, but I’ve had almost 7 years since that fall in EF.

[am1875 in reply to Deejay62]

Hi Dee. Happy New Year. Are you getting on well? I am on Warfarin. May I ask why you’re no longer taking it? Was it replaced with another med? Cheers!

[Deejay62 in reply to am1875]

Hi am 1875. Happy New Year. I hope you’re getting on well.

My warfarin was replaced by my gp, for no apparent reason, I now take Edoxaban 30mg. I did start on 60 mg but it showed my kidney function was being affected. I was actually over seen by the anticoagulation clinic as I gradually changed over. I feel my cardiologist had some say as he didn’t seem surprised.

I’m so glad I’m no longer on it. All I was told was I no longer needed to have blood tests and with this I can eat what I want so they’re taking me off it. It could be cost I’m not sure.

All the best

[am1875 in reply to Deejay62]

Thanks for sharing!

[am1875 in reply to Deejay62]

Hi Deejay. Please allow me to ask a few questions if you don’t mind. I think it was you who mentioned that you’ve had heart failure for 20 yrs. What was your ef back then and how many years do you estimate it took to get to 10% ? What level Hf classification was it 20 yrs. ago? Do you see yourself going to middle dose or even lower dose plus one half, or 3 pills a day? My cardiologist suggested trying to increase my dose by another half pill. I’m on the middle dose but think I’ll try it for awhile and see if it lowers my bp too much. I said a few questions. Thank you and cheers!

[Deejay62 in reply to am1875]

Hi my EF was 43% and it was stage 1 when I was first diagnosed. I was just placed on blood pressure tablets to keep it very low. After that I don’t know what it went down to as I have Atrial Tachycardia and they discovered it was stopping my heart from pumping so I had 4 ablations and a device fitted during that time but I was never told again. In fact I saw it going through one of my old medical reports. I’m usually never told, until recently.

6 almost 7 yrs ago after I was told I was pre diabetic and put on a specific tablet, I became really ill over a period of weeks and couldn’t breathe. I was taken off the diabetic tablet and I was actually sent to the chest clinic by my Gp and the chest clinic sent me to cardiology, by then I felt like I was dying, because I could hardly breathe. The cardiologist sent me to have tests on that same day and he was called when the Echo was being done and they discovered my EF was 10%.

My tablets were then changed over a period, by my nurse, who I saw regularly, and I trialled Entresto and was sent to be considered for transplant, but because I felt well on the tablets I just carried on and was working right through.

Things changed, I had a device box change and they wanted to monitor me at the main hospital so I was seen only by the cardiologists every 6 months and still am. It was only after an echo in 2023 that they discovered it had gone up to 23%. Last year he wanted to push it up more so I’m trialling a new drug, that’s when, after a 24hr holter monitor, they discovered I have an arrhythmia going off in the lower chamber of my heart so they want to do an ablation to get my heart pumping better.

I have Dilated Cardiomyopathy which for me is progressive so no I don’t see myself ever coming off the meds. I am taking them all for a reason. Fluid retention and arrhythmias. I also have pulmonary hypertension. The meds lowering the BP is a problem.

[am1875 in reply to Deejay62]

Thank you Deejay for sharing so thoroughly. Sounds as if the Entresto improved you so much. So a transplant is not something that you want to pursue while you’re age appropriate? Pardon me for asking so many questions. It’s fascinating that you have dealt with this for 20 yrs. I wish you all the best!!

[am1875 in reply to am1875]

Fascinating wasn’t the word I was looking for, but steadfast. All the best.

[PadThaiNoodles in reply to am1875]

Yeah, I think generally speaking they replace warfarin with one of the more modern anticoagulants unless you have a mechanical valve or a LVAD.

At my local pharmacy they had stopped stocking warfarin until I showed up with my brand new clikety clakety valve.

[Deejay62 in reply to PadThaiNoodles]

Yeah I think it’s now going to the people who actually need it. I was taking it for Afib. I’m glad I’m not on it anymore.

[Turnipgirl in reply to Deejay62]

At least with the new anticoagulants you aren't chained to clinics like you are with warfarin!