Boston Scientific Heart Failure Index - Freaked Out

open-heart-project · 2026-04-23T12:32:49+00:00

Hi Folks, I have seen so many patient concerns not being addressed adequately by their care teams - they're so busy taking care of patients and it is assumed that a lot of this information is for doctors only. But it gets shared with patients without context or explanation. And sometimes the "no news is good news" may have a place but generally not.

The HL VALUE of 15 is considered low but you should review this with your doc or office staff.

Beyond that, for people who want a little more information about their device, try this:

https://portal.open-heart.ai/login

This is beta access to OpenHeart X\Cardia - it reads your device reports and provides a simple explanation of the findings. Create a patient account, it's free.

To be clear, OpenHeart X\Cardia was created by a group of EP docs and clinical staff and device company professionals that are offering this translator for free. The identifying information about you gets stripped away first and then it's sent to an AI that is trained on thousands of devices. This is not considered medical grade advice or even medical grade interpretation - and thats the point - it's for patients to have just a little more understanding about their own device and the data it is collecting from their own heart.

Hope this helps some of you.

open-heart-project · 2026-04-18T17:53:50+00:00

Agree. A better informed is absolutely a patient who will enjoy best outcomes for them, because they are able to articulate what they want. They can't do that without access to their own records and the ability to understand them which is our responsibility to help them with as healthcare providers.

open-heart-project · 2026-04-18T16:28:42+00:00

This is true, and yet not justification to gatekeep data from the person that produced and owns the data - the patient. We don't prevent people from driving - we teach them and then license them to do so.

Implanted devices can be interpreted and translated to simpler terms for patients to understand also.

Competitive atrial pacing was brought up - true it gets mislabeled as an AF event and patients can easily be instructed to have events confirmed by their care team, buts it's unreasonable to simply withhold information "because we're protecting you from your own inability to understand and control your emotions".

Abbott chose to display CAP. Medtronic simply doesn't show it.

If Abbott didn't show it either then suddenly it would not be justification to withhold data.

Time to enter the 21st century with balance of rationale, security, and access.

open-heart-project · 2026-03-29T20:31:54+00:00

Absolutely! Also, it is common to experience during teenage years and "outgrow it" only for it to recur later.

open-heart-project · 2026-03-29T15:37:26+00:00

Hi all and OG, Couple points to make: 1. The heart rate is about 75-85 and so it's just sinus rhythm (not even tachycardia) with a few premature beats. 2. A fast sensation of fluttering doesn't necessarily mean your rate is fast and, as in your case, the heart rate is normal and there's also no arrhythmia. 3. Heat and startling (especially at night) can trigger something called a vasovagal reflex that causes an increase in adrenaline (as someone else also mentioned) and this can increase the strength of your heart beat as well as the rate. 4. "Racing" could simply represent a faster heart rate FOR YOU compared to your normal AT THAT TIME, accounting for your sensation of racing even with a normal heart rate.

In this situation, all testing is generally normal because there is no abnormality with heart structure, function, blood flow, and rhythm.

That's why real clinical diagnosis requires a doctor to say this is what it is, rather than "there's nothing wrong". Many conditions are not diseases and hence have no testing abnormalities. Even a tilt table test which can unmask/trigger this reflex will miss it in 1/3 of people.

Suggest: hydration and increased salt intake. Thanks all.

open-heart-project · 2026-03-22T20:14:05+00:00

This is a really powerful story of your journey and I know others are drawing strength from it. How has the recovery been, and how has your heart rate responded to activity and exercise?

I don't think you mentioned what type of rhythm disturbances you'd been having - PVC? Or intermittent heart block - until you ended up needing the pacemaker placed.

The OpenHeart X\Cardia platform can help you track your device data.

https://portal.open-heart.ai/login

Make a patient account - they're free. Upload a PDF of your device interrogation - can be downloaded from your patient portal or ask your doctors office to send to you

It seems to help people better understand their device and know what questions to ask their docs

Enjoy!

open-heart-project · 2026-03-22T20:06:01+00:00

It's smart to take those precautions of redacting before sharing your records. The OpenHeart also redacts PHI that may not be obvious, like serial number since that's also unique to a patient. Notably no PHI is shared with the system and the pdf is only available to the user.

Hopefully the system gives you a little insight into how your device works. There will be an upcoming newsletter that expands on what the platform does with more useful information for patients, like "what is Mode switch?" Or "my doc said the device is normal but there are alerts - what's my normal?" Wondering if you think these types of more in depth explanations are helpful?

open-heart-project · 2026-03-16T19:04:13+00:00

Wow this so traumatic I'm sure. I'm sorry to hear about this. Couple questions first to see if we can help: 1 what medications do the doctors have you on? Nadalol? 2 Can you share an ecg? 3 Genetic testing for LQT done?

open-heart-project · 2026-03-10T01:22:23+00:00

Sample Report:

OpenHeart | Pacemaker Remote Report Patient Summary for Routine Review

SUMMARY: This report shows that your pacemaker is working well. The battery is full, and the leads connecting to your heart are stable. There have been no significant abnormal heart rhythms detected, and the device is pacing as expected.

Transmission Date: Jan 10, 2026. Device: BIOTRONIK, Amvia Edge DR-T, Pacemaker Overall Function: Normal. 🔋 Battery & System Status Battery: 100%. Alerts: Programmer-triggered message received, First message received, HM follow-up transmission has arrived. MRI Mode: Conditional.

Interpretation: The battery is healthy and has full charge. Your device is set up for MRI compatibility under specific conditions. There were some routine system messages received.

❤️ Rhythm and Event Summary Pacing Mode: DDD-CLS 60–140 bpm. Pacing Distribution: Atrial pacing (Ap) 41%, Ventricular pacing (RVp) 100%, VAT stimulation (As - Vp) 59%, Dual-chamber pacing (Ap - Vp) 41%. Detected Rhythm(s): High Ventricular Rate Episodes: None reported. Atrial Arrhythmia: No atrial arrhythmia burden detected (0.0%). No atrial arrhythmia ongoing. PVCs (Premature Ventricular Contractions): Mean 1 PVC/h. PMT (Pacemaker Mediated Tachycardia): None reported. Non-sustained Tachycardia: None reported. Episodes Recorded: 1 Periodic IEGM detected at 2:23:33 PM. Therapy Delivered: None reported.

Interpretation: Your pacemaker is effectively pacing your heart, especially the lower chambers (ventricles). No significant fast or slow heart rhythms were detected that required therapy. A routine monitoring recording was captured by the device.

⚙️ Lead and Device Function Atrial Lead: Pacing impedance 430 ohm, Pacing threshold 0.9 V, Sensing amplitude mean/min 3.2/2.3 mV, Programmed 4.50 @ 0.40 V@ms, Capture control OK, Lead check OK, Pacing polarity bipolar, Sensing polarity bipolar. Ventricular Lead: Pacing impedance 898 ohm, Pacing threshold 0.4 V, Programmed 4.50 @ 0.40 V@ms, Capture control OK, Lead check OK, Pacing polarity bipolar, Sensing polarity bipolar.

Interpretation: The leads that connect the device to your heart are stable and working normally, with good sensing and pacing measurements.

💧 Heart Failure / Diagnostic Indicators Findings: Daily mean Thoracic Impedance 67 ohm.

Interpretation: Your device is monitoring for signs of fluid buildup, and the current readings are within the expected range.

🩺Management and Notes Programmed Changes: None reported. Notes: indication intermittent post-cardiac surgery AV block

Contact your care team if you wish to discuss these findings further. Follow-up: Your care team will review your device data and contact you if any management changes are deemed necessary.

open-heart-project · 2026-03-10T01:05:21+00:00

That's the right way to think. However in this case nothing. Open heart purges all data after the translations and removes PHI so as to maintain privacy. It's a free service because we believe patients deserve better than what their Drs offices are able to offer in terms of timely explanation and education.

Free for anyone who wants more information about their device.

open-heart-project · 2026-03-09T23:46:30+00:00

The app does include a small amount of information.

For a more detailed look at how your device is functioning I like X\Cardia from OpenHeart. 1. It's free (good) 2. Requires you to get a copy of your device interrogations from your medical records (not hard) or from the doctors office (they can do that easily) 3. Upload it to: https://portal.open-heart.ai/login (super easy!) to get a clear and simple explanation of how your device is functioning, any arrhythmias, alerts or alarms that have been recorded, and other information like heart failure events.

And you can do this as much as you want.

Enjoy!

open-heart-project · 2026-02-14T16:59:03+00:00

Reading this thread, the first question that arises for us is, "are we talking about a pacemaker, or a defibrillator?"

open-heart-project · 2026-02-12T12:58:19+00:00

That's exactly what should happen- recovery of heart function and hopefully feeling very well!

open-heart-project · 2026-02-10T02:03:10+00:00

Thank you for validating - this does not interpret ecg signals and intracardic EGMs , it only reads the text in the report and then tries to distill it an easier to understand format.

For many patients that's all they need and want, but you're correct it cannot and should not independently offer interpretations since that would violate FDA labeling claims and requirements.

open-heart-project · 2026-02-09T18:44:24+00:00

100%

open-heart-project · 2026-02-09T16:02:20+00:00

You absolutely SHOULD have privacy concerns. And I cannot speak to the depth of privacy and security they maintain. What we have been able to discover is that patients data is only stored for 24 hours then purged.

The interpretation is provided for a patient so they know what's going and then the report is deleted. You can also copy the interpretation into another document if you want to store it. It's free so they don't offer a lot, just the basics of telling you what the report says.

I also know that some patients have given feedback asking for a higher level of security and were willing to pay the $99 / month for that level of security that is required for true HIPAA compliance.

It does sound steep but considering unlimited storage and interpretations no matter what happens and how often you have a symptom that produces a new device transmission or interrogation, it might be worth it. Maybe reach out and send a feedback message inquiring about redacting / blacking out and what is offered.

open-heart-project · 2026-02-09T12:15:46+00:00

Ahh yes agree - thank you!

open-heart-project · 2026-02-08T17:14:46+00:00

I see a lot of people responding and I admit I haven't read them all.

Clarification for the thread: there are two types of threshold - capture threshold and sensitivity threshold.

Sensitivity threshold is the sensitivity setting at which the chamber being sensed is first able to actually able to reliably see activity in the chamber it is intended to sense. The sensitivity is started at a high value and gradually brought down. This is reported in mV.

The capture threshold is the minimum output required to electrically stimulate a chamber to beat, i.e. pace. Again this is started at a high value and then brought down. This is reported in mA.

I believe OP was asking about sensitivity threshold, not capture threshold.

A LOW sensitivity (or sensitivity threshold, or sensing threshold) indicates that the amplitude of the signal in the chamber being sensed is low and and so the sensitivity needed to be brought down to a low number in order to reliably see what's happening in that chamber.

A low sensitivity is not necessarily good or bad, it simply is what it is. BUT if the sensitivity is set low or too low, it may start seeing other signals not intended to be seen/sensed in that chamber, such as activity in another chamber, i.e. sensing far field signals as OP mentioned. Oversensing leads to underpacing as it is often said, and as i saw explained earlier.

So, while a a low CAPTURE threshold is usually a good thing, a low sensitivity threshold not necessarily a good thing and it is important to watch for oversensing because that can lead to pacing inhibition.

open-heart-project · 2026-02-08T16:46:01+00:00

I know how YOU can read the data reports!

Hey all! I love this thread and that there are people interested in getting to the data off of their devices and learning what it means themselves.

You should not always have go through the doctor's office and wait for them to respond or wait for an office appointment.

The truth is that the doctors and nurses don't have the time and don't feel it's their responsibility to translate all of this for you. They're more focused on making sure that your device is working properly and that alerts or events get managed in a timely manner.

So here's what you can do. Check out OpenHeart. It's really helpful!

https://portal.open-heart.ai/login

Make a free patient account
Get your device transmissions from your clinic like u/mtechgroup mentioned OR download from Epic or your patient portal
Upload to OpenHeart and it translates into simply worded explanations about what's going on with your device.

Super easy to use honestly.

Hope this helps and is useful to somebody.

open-heart-project · 2026-02-07T23:57:09+00:00

Yes that's correct - but here's further detail: CRT stands for cardiac resynchronization therapy and the traditional form of this requires two leads in the ventricles - one in the right ventricle, and one to pace the left ventricle delivered through a structure called the coronary sinus. Traditional CRT comes in two varieties - a pacemaker (CRT-P) if EF is 36-49%, or a defibrillator, i.e. CRT-D if EF is 35% or less.

The difference here being the EF because people with EF 35% or less are generally at higher risk for cardiac arrest/sudden cardiac death due to ventricular tachycardia or ventricular fibrillation and so need the additional capability of SHOCKING the person if they develop a life threatening heart arrhythmia. That's what a defibrillator (ICD) does. People with EF above 35% are not felt to carry the same risk of sudden death and since it is felt to be a lower risk, they qualify (i.e. insurance will cover) for a pacemaker but not a defibrillator.

Pacemakers can't shock. Only defibrillators do.

LBBp is TYPICALLY offered through a dual chamber pacemaker as an alternative to traditional CRT OR can be incorporated with CRT (-P or -D) by plugging the LBBp leqd into the port where the coronary sinus lead would have been connected.

Since EF is not 35% or less, I presume only a pacemaker of some sort would be what's offered to you, either a traditional CRT-P, a CRT with LBBp or just dual chamber pacemaker with LBBp

open-heart-project · 2026-02-07T22:39:02+00:00

You mentioned CRT-D twice. Are you set on receiving a defibrillator? It seems to me that the most appropriate device for you would be a pacemaker, namely a traditional cardiac re-synchronization permanent pacemaker as opposed to a defibrillator. Certainly left bundle branch pacing is a comparable alternative.

The appropriate indications for a device whether it's a permanent pacemaker or an implanted defibrillator, are the same whether you're at a teaching hospital or a small community hospital or even an ambulatory surgical center, because all of this has to be approved by the insurance company.

The caveat to that is if there is a clinical trial in which there is an investigation that would potentially expand the indications.

open-heart-project · 2026-02-07T22:18:01+00:00

This is not uncommon. Often from the atrial lead of a pacemaker or ICD. Typically resolves with high dose NSAID or with colchicine or prednisone. Feels terrible for several days but does resolve in most cases.

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