He’s Knocking on My Door

Tag: LBBB

  • Social Media and Chronic Illness: Finding Support Without Getting Lost in the Noise

    Social Media and Chronic Illness: Finding Support Without Getting Lost in the Noise

    When I was in the hospital and found out I had congestive heart failure, I knew something wasn’t right.

    I didn’t feel good. I was having chest pains. My blood pressure was high. I already knew I had aortic stenosis and was waiting to be scheduled for surgery to replace my aortic valve.

    At the time, I thought the two things went together pretty simply.

    My valve was bad. They would replace the valve. I would recover. Then I would be fine.

    Well, apparently I misunderstood part of that conversation.

    The heart failure wasn’t necessarily going away.

    I have HFpEF — heart failure with preserved ejection fraction — and it took me about three months after having my heart valve replaced to fully understand that this was something I was going to have to manage going forward.

    That realization changes things.

    The First Thing You Do Is Google It

    Fast-forward a little bit and, like most people who suddenly find themselves diagnosed with something serious, I started reading.

    And reading.

    And reading.

    You Google congestive heart failure and eventually ask the question everyone is probably afraid to ask:

    How long am I going to live?

    Then you see statistics saying things like half of people with heart failure die within five years.

    Well, shit.

    Those aren’t exactly comforting odds when you are sitting there trying to figure out what just happened to your life.

    But statistics need context. Heart failure affects a huge range of people with different types of heart failure, different ages, different health conditions and different levels of disease.

    A statistic doesn’t know me.

    So I started trying to learn specifically about HFpEF: what it is, how people manage it and what living with it actually looks like.

    There is certainly no shortage of information online.

    There are thousands of pages from hospitals, government agencies, heart foundations, pharmaceutical companies, doctors and researchers.

    Much of that information is incredibly valuable.

    But I wanted something else too.

    I wanted to hear from people living with it.

    I wanted someone to talk about chronic illness in language I understood.

    Where Are the Regular People?

    I started searching websites and blogs for personal experiences.

    What surprised me was how difficult those could be to find.

    Most of the results took me right back to hospital websites, medical organizations, pharmaceutical companies and foundations.

    There wasn’t nearly as much from the person sitting at home trying to figure out:

    What does my life look like now?

    That’s one of the reasons I eventually started He’s Knocking on My Door.

    I’m not a medical organization.

    I’m just someone living through this stuff and trying to make sense of it.

    Then I Found the Facebook Groups

    Eventually I started looking through Facebook.

    And as everyone who has spent more than five minutes on Facebook knows, there is some good stuff there and there is some absolute garbage.

    I’ve tried quite a few groups. These are some of the ones I’ve continued to follow:

    There are tons more.

    These are simply the ones I’ve tried and, for one reason or another, continued reading.

    Hearing Other People’s Stories Helps

    My experience with the illness-specific support groups has generally been positive.

    Most people genuinely seem to care.

    Everyone is there because either they or somebody they love is dealing with an illness. People understand fear, uncertainty and frustration because they have experienced some version of it themselves.

    Sometimes you just need to hear somebody say:

    I’ve been there too.

    Those groups contain thousands of stories.

    Someone talks about being exhausted.

    Someone talks about swelling.

    Someone talks about being afraid before valve surgery.

    Someone talks about adjusting to medication.

    Someone talks about having a good day after weeks of bad ones.

    I read their experiences and sometimes see pieces of my own situation in them.

    I’m not looking for a cure from Facebook.

    I’m trying to understand the journey.

    There is a difference.

    The Dangerous Part: Everybody Becomes a Doctor

    There is also a problem with medical support groups.

    People want to help.

    Sometimes they want to help a little too much.

    You mention a symptom and suddenly people are telling you which medication you should take, which medication you should stop taking, which supplement cured their problem or what your doctor should be doing.

    That’s where you need to be careful.

    Your medical team should be the people giving you medical advice.

    What works for one person may be completely inappropriate or even dangerous for somebody else.

    The person answering your Facebook post doesn’t know your medical history, medications, kidney function, blood pressure, lab results or the hundred other things your doctors may be considering.

    I didn’t join these groups looking for strangers to treat me.

    I joined because I wanted to hear how other people were living with their conditions.

    That can be incredibly valuable.

    Medical advice from strangers?

    Not so much.

    Then There Are the Food Groups

    The food groups have been a completely different experience for me.

    I’m sure the overwhelming majority of people in them are perfectly nice.

    Unfortunately, sometimes the internet trolls are considerably louder than everybody else.

    When you’re dealing with heart failure and trying to completely change how you eat, you’re already overwhelmed.

    I’m trying to find low-sodium food that doesn’t suck.

    That’s challenging enough.

    I don’t need to post something I’m eating and have somebody tell me I’m doing everything wrong because their idea of the perfect heart-healthy diet is different from mine.

    I’ve tried several food groups and eventually left many of them.

    There can be useful information buried in there, but sometimes the negativity isn’t worth digging through.

    Chronic illness already consumes enough mental energy.

    I don’t need Facebook taking the rest.

    Podcasts, TikTok and Everything Else

    I’ve also listened to some very good podcasts about chronic illness and heart disease.

    Most of the ones I’ve found are produced by doctors, hospitals or other medical professionals.

    Again, that’s valuable information.

    What seems much harder to find are podcasts from average people simply talking about what it is like to live with these conditions every day.

    I understand why.

    Creating a podcast, website or regular video content takes a lot of work.

    I’ve seen some chronic illness content on TikTok too. A lot of it seems centered around weight loss, exercise or individual pieces of someone’s health journey.

    But I still haven’t found nearly as many people simply saying:

    Here’s what happened to me. Here’s what I’m dealing with. Here’s what worked for me. Here’s what didn’t. Here’s what today was like.

    That’s part of what I’m trying to do here.

    This Website Is Part of How I Cope

    He’s Knocking on My Door started partly because I couldn’t find exactly what I was looking for.

    I wanted the patient side of the story.

    Not another definition of HFpEF.

    Not another diagram of the heart.

    Not another medical paper that requires me to look up every third word.

    I wanted to know how people live with this stuff.

    How do you deal with the fatigue?

    How do you change your diet?

    How do you handle the fear?

    How do you adjust when you can’t physically do everything you used to do?

    How do you deal with family and friends who don’t completely understand?

    How do you keep living your life when chronic illness suddenly becomes part of it?

    Writing about those things has become a coping mechanism for me.

    If somebody else happens to find something helpful in my experience along the way, even better.

    Social Media Isn’t Medicine — But It Can Still Help

    There is an incredible amount of chronic illness information on social media.

    Some of it is helpful.

    Some of it is wrong.

    Some of it is supportive.

    Some of it will scare the hell out of you.

    And some of it should probably never have been posted in the first place.

    You have to learn to separate someone sharing their experience from someone giving you medical advice.

    Those are two very different things.

    I would never recommend changing medication, treatment, diet restrictions or anything else medically significant because somebody in a Facebook group told you to.

    That’s a conversation for your medical team.

    But I absolutely believe there is value in hearing other people’s stories.

    Sometimes those stories help you understand what questions to ask.

    Sometimes they help you realize that something you’re experiencing isn’t unique to you.

    Sometimes they help set realistic expectations.

    And sometimes they simply make you feel a little less alone.

    When you’re suddenly living with a chronic illness, that can matter more than people realize.

    Use social media as a place to listen, learn and connect. Just don’t confuse the person sitting behind a keyboard with the doctor sitting across from you.

    Disclaimer: This article is based on my personal experiences and observations while living with chronic illness. The Facebook groups, websites, podcasts, and other resources mentioned are shared for informational and community-support purposes only. I am not endorsing any medical advice, treatment, product, or recommendation made by members of these groups. Always discuss symptoms, medications, treatments, diet changes, and other medical decisions with your own healthcare team. Online support can be helpful, but it should never replace professional medical care.

  • TAVR: The Heart Valve That Changed My Life

    TAVR: The Heart Valve That Changed My Life

    This is probably the hardest thing I’ve ever written about.

    I’ve talked about pieces of my health story before. I’ve written about heart failure, LBBB, medications, hospital stays, daily health checks and what it’s like trying to live with all of this.

    But this is the story that connects most of those pieces.

    My TAVR.

    And to really explain how I got there, I have to go back a little further.

    I Thought I Was Pretty Healthy

    I’ve been overweight pretty much my entire life.

    I’m not going to sugarcoat that.

    But until 2020, I considered myself relatively healthy and surprisingly limber for a big guy.

    I mean, I wasn’t Chris Farley limber, but I could hold my own.

    I took some preventative medications. I worked. I drove an hour and a half each way to work. I had hobbies. I did woodworking. I took care of things around the house.

    I lived my life.

    Then, in 2020, I had a stroke.

    Everything changed.

    The First Time My Body Changed the Rules

    Recovering from my stroke required some major lifestyle changes.

    Exercise.

    Eating better.

    No more alcohol.

    And suddenly, a whole lot more doctors.

    Did it suck?

    Hell yeah, it did.

    But there was one thing I didn’t have to do.

    I didn’t need surgery.

    I needed rehabilitation and a tremendous amount of work.

    I still remember sitting at my computer playing that card-matching game we played as kids. Two cards flip over. Try to remember where the matching card is.

    I did it for hours. It was so frustrating. I couldn’t match a card if my life depended on it.

    I was exercising my brain because I wanted it to come back faster.

    It didn’t come back faster.

    That’s another lesson I’ve learned through all of this. You can push your body as hard as you want, but sometimes your body has its own schedule.

    I desperately wanted to get back to being the person I was before the stroke.

    Eventually, I had to understand that some things had changed.

    But again:

    No surgery.

    That distinction was going to become pretty important a few years later.

    Then Came the Chest Pain

    After we moved to Southwest Florida, I had some chest pain and went to the emergency room.

    We’d only been living here for a few months, and I didn’t even have all my doctors established yet.

    Eventually, I got in with a cardiologist.

    He wanted tests.

    Lots of tests.

    One test led to another, which led to another.

    Eventually, I got the answer.

    Severe aortic stenosis.

    The aortic valve is essentially the doorway that allows blood to leave the heart and enter the body’s main artery, the aorta. With aortic stenosis, that doorway becomes narrowed. In my case, the valve had become severely calcified and wasn’t opening properly.

    This wasn’t something I could fix by eating better.

    There wasn’t a pill that was going to make my severely calcified valve normal again.

    I needed a valve replacement.

    My reaction was basically:

    Fuck. I have to have heart surgery.

    And Then I Learned I Had Heart Failure

    The testing continued.

    One piece of good news surprised the hell out of me.

    I didn’t have the coronary plaque buildup I expected.

    I’ve eaten plenty of terrible food in my lifetime.

    And plenty of bacon.

    So I’ll take the win.

    But there was another finding that wasn’t so great.

    I had heart failure—more specifically, heart failure with preserved ejection fraction, or HFpEF.

    At the time, my thinking was pretty simple:

    Fix the valve.

    Fix the problem.

    Go back to normal.

    Unfortunately, my heart had apparently not read the same brochure I had.

    I Was Terrified of Open-Heart Surgery

    I keep using the word surgery because you have to understand something about me.

    I’d never really had surgery.

    The worst things I’d dealt with were stitches and a broken hand.

    Easy fixes compared with someone opening my chest and operating on my heart.

    Then there was another complication.

    I already had significant trouble walking.

    My doctors and I discussed what recovery from open-heart surgery could look like for me. Because of my mobility problems, there was a real possibility that I would need rehabilitation afterward before I could safely manage at home.

    So now, in my head, this wasn’t just:

    Heart surgery.

    It was:

    Heart surgery + hospital + rehabilitation facility + who knows what comes after that.

    Emotionally, I was thinking:

    WTF. I’m not doing this.

    The problem was that doing nothing wasn’t exactly a great alternative.

    My father died at 54.

    I was 58.

    I’d beaten him by four years.

    That puts things into perspective pretty quickly.

    Eventually, the decision becomes remarkably simple:

    Deal with it or eventually let it kill you.

    Then We Started Talking About TAVR

    My doctors discussed another possibility with me:

    TAVR — Transcatheter Aortic Valve Replacement.

    Instead of opening the chest to replace the valve surgically, TAVR allows doctors to deliver a replacement valve through a catheter, commonly through an artery in the groin, and expand it inside the diseased aortic valve.

    It is still a major heart procedure.

    But it isn’t the same operation or recovery as traditional open-heart valve replacement.

    Because of my overall situation—including my mobility limitations—my heart team considered whether TAVR was an appropriate option.

    Then came more testing.

    Would my anatomy work?

    Were my blood vessels suitable?

    What size valve would I need?

    Was I an appropriate candidate?

    Fortunately, those answers came back in my favor.

    After the heart team reviewed everything, I was approved for TAVR.

    For the first time in a while, I felt like maybe there was a path through this.

    But First, I Had to Wait

    Living in Southwest Florida means there are plenty of people with heart problems.

    I wasn’t the only person who needed a valve.

    My procedure got pushed back.

    More than once.

    Meanwhile, my health continued deteriorating.

    I was hospitalized several times with heart-failure problems.

    My blood pressure could get extremely low.

    I struggled to manage my fluid levels.

    Diuretics created their own problems, including episodes involving my kidneys.

    I became unbelievably fatigued.

    I had episodes where I felt like I might pass out.

    Eventually, simply getting to the bathroom became an accomplishment.

    Driving was out of the question.

    I had originally been told we were looking at around June 2025.

    I finally got my new valve on:

    December 16, 2025.

    That was a long wait.

    And it gave me plenty of time to think about absolutely everything that could possibly go wrong.

    Surgery Day

    By the time December 16 arrived, I had been carrying around anxiety about this for months.

    Then suddenly it was real.

    I was scared to death.

    I was emotional.

    All sorts of thoughts were going through my head.

    Is this the last time I’m going to see my wife?

    Am I going to see my kids again?

    What if something goes wrong?

    I’m tearing up even writing this now.

    Eventually, there’s nothing left to do except put on your big-boy pants and go to the hospital.

    So that’s what I did.

    There Is No Modesty in a Hospital

    First, everything comes off.

    You get the gown.

    Then people start coming in.

    Vitals.

    Questions.

    Preparation.

    Of course, one of the nurses taking care of me was extremely attractive.

    Because why wouldn’t she be?

    Then another person comes in to shave me.

    Chest.

    Armpits.

    Down below.

    Meanwhile, the attractive nurse just keeps doing her job like absolutely nothing unusual is happening.

    There is no modesty in a hospital.

    At some point you just accept that your dignity has left the building and hope somebody gives it back at discharge.

    Heck of as first experience, naked, shaven and scared.

    Then Came the IV Disaster

    This was where my fear temporarily turned into anger.

    I’ve had trouble with IVs before, so I asked them from the beginning to use ultrasound guidance.

    They were confident they wouldn’t need it.

    Fine.

    There was supposedly a rule: two unsuccessful attempts and somebody else tries.

    Well…

    Person number one.

    Person number two.

    Person number three.

    By the time we got to person number four, I had been stuck eight times.

    These weren’t tiny little blood-draw pokes either. They needed substantial IV access for the procedure.

    My arms were up in the air.

    People were slapping them, searching for veins.

    I was pissed.

    And I wasn’t exactly keeping my opinion to myself.

    My doctors walked in while this was happening.

    They looked at me.

    Looked at each other.

    And essentially decided:

    We’ll see you in there.

    Eventually somebody brought out the ultrasound.

    They found the vein.

    I remember someone saying something along the lines of:

    “Oh, look. We were close.”

    That did not improve my mood.

    Then My Wife Came In

    Eventually, the chaos stopped.

    My wife came in.

    We talked.

    We said what we needed to say.

    And once again that thought entered my head:

    What if this is the last time I see her?

    Then she left.

    And not long after that…

    I was out.

    Apparently, I Went to Visit SpongeBob

    I don’t do recreational drugs.

    But whatever they gave me for this procedure?

    Wow.

    My memory of it is bizarre.

    I was hanging out with SpongeBob SquarePants. It must have been on the TV. I don’t even watch the show.

    Colors everywhere.

    Having a great time.

    Apparently my brain decided that if we were going to have heart surgery, we might as well spend part of it in Bikini Bottom.

    Then suddenly…

    I woke up.

    There was something like a sheet or drape over my head.

    My first thought was:

    Holy crap. Am I dead?

    So I yelled:

    “Hello?”

    I tried moving my arms.

    Couldn’t.

    Then I heard voices.

    My doctors were still there.

    They had just finished the procedure.

    I remember saying:

    “There’s a sheet over my head.”

    Then:

    “Are my hands tied?”

    There were other people in the room too.

    Here’s the important part:

    I apparently wasn’t supposed to be awake yet.

    They gave me some more medication.

    And off I went.

    Back to SpongeBob.

    Unfortunately, round two hit me considerably harder.

    I was nauseated for about three days afterward.

    “Does That Happen Often?”

    The next day I needed an echocardiogram.

    I asked the person performing it whether they had been in the room when I woke up.

    They had.

    First thing they said, “Wow, you remember that?”

    Naturally, my first question was:

    “Did I say anything bad?” I am kind of a jokester and very sarcastic.

    Because if I’m going to wake up unexpectedly while still under the influence of whatever they gave me, this seems like useful information.

    Apparently I behaved myself.

    Later I asked my surgeon whether people wake up like that very often.

    He told me he’d never personally seen it happen before.

    I was his first.

    Lucky me.

    Yet another reason I apparently need to start buying lottery tickets.

    The Valve Was In — But We Weren’t Done

    One of the attractions of TAVR is that many patients can go home relatively quickly after an uncomplicated procedure.

    That wasn’t going to be me.

    Afterward, I had to remain flat for hours while they monitored the access sites and allowed the medications used during the procedure to wear off.

    I also had temporary pacing available after the procedure.

    At this hospital, the pacing wire was through my neck.

    For a day?

    Okay.

    For several days?

    Pretty freaking uncomfortable.

    And I needed it because my heart’s electrical system wasn’t particularly happy about its new neighbor.

    My Heart Started Pausing

    After the TAVR, I developed a new electrical conduction problem:

    Left bundle branch block, or LBBB.

    I’ve written an entire article about that because it deserves its own explanation.

    The short version is that the heart’s electrical conduction system runs very close to the aortic valve. Implanting a replacement valve can sometimes disturb that system.

    My heart also started having pauses.

    Basically, there were periods when the electrical activity wasn’t doing what it was supposed to do.

    That’s why I stayed in the hospital for four days instead of heading home the next day.

    The question became:

    Do I need a permanent pacemaker?

    Fortunately, after several days of monitoring, my doctors decided I didn’t need one at that point.

    But they weren’t going to send me home and simply hope everything behaved.

    Meet My Loop Recorder

    I was given a choice about longer-term monitoring.

    I decided to have an implantable loop recorder placed under the skin in my chest.

    A loop recorder isn’t a pacemaker.

    It doesn’t pace my heart.

    It doesn’t shock me like a defibrillator.

    It watches.

    Mine communicates with my phone and allows heart-rhythm information to be transmitted for review.

    I get reports showing unusual events, including pauses and rhythm abnormalities.

    I can also mark symptoms when something unusual happens so the event can be correlated with what my heart was doing around that time.

    My heart still has pauses.

    So far, based on the monitoring and my doctors’ assessment, they haven’t resulted in a recommendation for a permanent pacemaker.

    That could change someday.

    For now?

    We watch.

    So I Got the New Valve. Am I Fixed?

    This is where reality didn’t quite match what I expected.

    The good news is very good:

    My replacement aortic valve is working well.

    Follow-up imaging has shown that the valve is functioning properly.

    That’s a huge win.

    But I still have HFpEF.

    For whatever reason, I had come away from some of those early conversations believing that replacing the valve might essentially resolve the heart failure.

    That wasn’t what happened.

    Whether I misunderstood, heard what I wanted to hear, or simply couldn’t process the enormous amount of information being thrown at me at the time, I don’t know.

    And that’s another lesson:

    Bring somebody with you.

    Appointments and hospital stays can involve an overwhelming amount of information.

    Medications.

    Numbers.

    Procedures.

    Risks.

    Options.

    Follow-ups.

    You’re scared, tired, uncomfortable and trying to remember everything someone just said.

    Having another set of ears in the room is incredibly valuable.

    Eight Months Later

    As I write this, I’m about eight months out from TAVR.

    The valve is doing its job.

    But I still have LBBB.

    I still have HFpEF.

    I still have episodes where I become extremely lightheaded and feel like I might pass out.

    Sometimes I sweat profusely.

    I’ve noticed that exertion and heat seem to play a role.

    I’m working with my doctors to understand exactly what’s happening.

    We’ve adjusted medications.

    My loop recorder continues watching my rhythm.

    When I experience something unusual, I can mark the event so there’s information available to review later.

    This isn’t something I’m trying to diagnose myself.

    That’s what my doctors and the monitoring are for.

    If you want to follow that part of the story as it happens, that’s really what my Daily Journal has become.

    Would I Do It Again?

    This was the scariest medical experience of my life.

    And this article is still the abridged version.

    There are pieces of this story that deserve their own articles, and I’ll eventually write them.

    But would I have the TAVR again?

    That’s kind of a funny question.

    Because someday, I may actually have to.

    Bioprosthetic replacement valves don’t necessarily last forever. How long an individual TAVR valve lasts depends on many factors, and because TAVR is relatively newer than surgical valve replacement, long-term durability continues to be studied.

    I’m younger than the traditional TAVR patient.

    I was 58 when mine was implanted.

    Fortunately, my anatomy and the size of the valve that was implanted may leave options if the valve eventually deteriorates.

    One possibility in selected patients is another transcatheter valve placed inside the first one—sometimes called TAVR-in-TAVR or valve-in-valve TAVR.

    Whether that’s what happens to me someday?

    Who knows.

    That’s a conversation for future me and whatever heart team is taking care of me at that point.

    Medicine changes.

    Technology changes.

    Procedures improve.

    There are treatments available today that weren’t available a generation ago.

    I’m not going to spend the next decade worrying about what valve technology might look like when I’m in my 70s.

    I’ll deal with that when I get there.

    ❤️ Greg’s Take

    I went into this thinking the new valve was going to fix me.

    That’s probably the biggest misconception I carried through the whole process.

    I imagined a finish line.

    Get the valve. Recover. Go back to normal.

    Instead, the TAVR became another starting line.

    My valve works.

    That’s something I’m incredibly grateful for.

    But I still have heart failure.

    I still have LBBB.

    I still have a loop recorder watching my heart.

    I still have pauses.

    I still have symptoms we’re trying to understand.

    I still have good days and bad days.

    And I’m still here.

    That’s really what this website is about.

    It isn’t about somebody who got sick, found the magical treatment and went back to exactly the life he had before.

    That isn’t my story.

    My story is learning how to live when the finish line keeps moving.

    It is learning what I can control and what I can’t.

    It’s learning to ask questions.

    It’s learning to bring someone with me when there are too many answers to remember.

    It’s learning that sometimes the thing you’re absolutely terrified of doing is also the thing that gives you the chance to keep going.

    On December 16, 2025, I walked—or more accurately, was wheeled—into a hospital terrified that I might never see my wife and kids again.

    I woke up with a new heart valve.

    Okay…

    I woke up with a new heart valve and apparently spent some quality time with SpongeBob SquarePants.

    Eight months later, life still isn’t easy.

    I’m not fixed.

    I’m not the person I was before my stroke.

    I’m not even the person I thought I’d be after TAVR.

    But I’m still here.

    And for now?

    That’s enough.

    Medical Disclaimer

    This article describes my personal experience with severe aortic stenosis, heart failure and TAVR. It is not medical advice and should not be used to decide whether TAVR, open-heart surgery or any other treatment is appropriate for you. Every patient’s heart condition, anatomy, surgical risk and medical history are different. Treatment decisions should be made with your cardiologist and heart-valve team. If you have chest pain, fainting, severe shortness of breath or symptoms that may represent a medical emergency, seek immediate medical care.

  • Left Bundle Branch Block: An Unexpected Part of My TAVR Journey

    Left Bundle Branch Block: An Unexpected Part of My TAVR Journey

    When I went into the hospital for my TAVR procedure, my attention was focused on one thing: my aortic valve.

    I had severe aortic stenosis, and the goal was to replace the failing valve and get my heart working better.

    What I didn’t fully appreciate beforehand was just how close the heart’s electrical system is to where that new valve would be placed.

    I learned about that very quickly.

    After my TAVR, I developed something called a left bundle branch block, or LBBB.

    And before anyone scheduled for a TAVR starts worrying, let me make something clear:

    Not everyone who has a TAVR develops LBBB.

    It is a known complication of the procedure, but it certainly isn’t something that happens to everyone. In one large U.S. registry analysis involving more than 200,000 TAVR patients, about 16% developed a new LBBB after the procedure. The exact risk can vary depending on the patient, the valve and other factors.

    Apparently, I was one of the lucky ones.

    Maybe I should start buying lottery tickets too.

    What Is a Left Bundle Branch Block?

    Before all of this happened, “left bundle branch block” wasn’t exactly something that came up in everyday conversation.

    The easiest way I’ve learned to think about it is that the heart doesn’t just pump—it also has its own electrical wiring system.

    Electrical signals travel through pathways in the heart that tell the chambers when to contract. Part of that electrical system divides into a right bundle branch and a left bundle branch.

    Normally, the electrical signal travels through these pathways in a coordinated way.

    With LBBB, the electrical signal doesn’t travel normally through the left bundle. Instead, the impulse has to take a different route to activate the left ventricle.

    The result is that the ventricles don’t receive their electrical signal in quite the same synchronized way they normally would.

    I tend to think of it as an electrical detour.

    The signal still gets there, but it isn’t traveling down the normal road.

    Why Can LBBB Happen After TAVR?

    My doctors gave me a pretty simple explanation.

    The replacement aortic valve sits very close to some of the heart’s electrical conduction system.

    When the new valve is placed, that nearby electrical system can sometimes be disturbed. That’s why conduction problems such as LBBB are recognized complications following TAVR.

    That’s what happened to me.

    My new valve addressed one major problem, but I left the procedure with a new electrical issue that needed to be monitored.

    Chronic illness seems to have a sense of humor like that.

    They Saw Something Different on My ECG

    After my TAVR, my doctors noticed that my heartbeat looked different on the ECG.

    That was the first indication that something had changed electrically.

    When LBBB is present, the electrical delay changes the shape and duration of the QRS complex on an ECG. One characteristic that can appear is a broad or notched, sometimes M-shaped, pattern in certain leads. That’s one of the things that was pointed out to me on my ECG.

    The American Heart Association also describes this characteristic M-shaped appearance in its educational material about LBBB.

    That doesn’t mean you can look for an “M” on an ECG and diagnose yourself with LBBB. Doctors use several ECG measurements and characteristics to make the diagnosis.

    For me, the important part was much simpler:

    That electrical pattern wasn’t there before my TAVR. Now it was.

    My Hospital Stay Just Got Four Days Longer

    I certainly wasn’t expecting that.

    Instead of going home and beginning my recovery, I ended up staying in the hospital for four additional days while they monitored my heart.

    The concern was whether this new conduction problem would progress.

    Would my electrical system stabilize?

    Would it get worse?

    Would I need a pacemaker?

    Those weren’t questions anyone could answer immediately.

    So we waited and watched.

    Pacemaker or Monitoring?

    Ultimately, I didn’t receive a permanent pacemaker at that time.

    Instead, I was given a choice about continued heart-rhythm monitoring.

    One option was an external heart monitor that I would wear for a period of time.

    The other was an implantable loop recorder.

    I chose the loop recorder.

    For me, I liked the idea of having something continuously monitoring my heart over the long term rather than wearing an external monitor temporarily.

    The loop recorder is a small device implanted under the skin that records information about my heart rhythm.

    And now it has become another part of my everyday life.

    My Heart Sends in a Monthly Report Card

    I receive a report each month showing anything unusual the monitoring system has detected.

    That can include things such as pauses or unusual rhythms.

    And yes, apparently my heart occasionally likes submitting some interesting material for the report.

    I’ve had pauses detected, which is one of the reasons this continued monitoring is important.

    The system also gives me another useful feature.

    If I’m experiencing something unusual—maybe I’m lightheaded or just feel that something isn’t right—I can use my phone to mark the event.

    I can enter what I was doing and describe what I’m experiencing.

    That creates a record associated with the event so it can be reviewed later.

    I really like having that ability because it provides context.

    Instead of simply saying at my next appointment, “I felt really strange one afternoon a few weeks ago,” there can be a record of when it happened and information about what I was experiencing.

    What My Loop Recorder Does NOT Do

    This is an important distinction.

    My loop recorder is a monitoring device. It is not a treatment device.

    It isn’t a pacemaker.

    It isn’t an implanted defibrillator.

    And it isn’t going to shock my heart or correct a dangerous rhythm if something happens.

    It records information.

    If I’m experiencing what could be a medical emergency, pressing a button on my phone isn’t a substitute for getting emergency medical care.

    An emergency still means getting emergency help.

    The recorder’s job is to help capture information that my doctors can use to understand what’s happening with my heart.

    I Still Have Pauses

    Since the loop recorder was implanted, it has detected pauses in my heartbeat.

    That obviously gets my attention.

    A pause doesn’t automatically mean that I need a pacemaker, but it’s one of the electrical findings my doctors can follow along with everything else that’s happening.

    That’s especially important because I also experience symptoms.

    The Lightheadedness Is What Concerns Me

    There are periods when I become extremely lightheaded.

    Sometimes I get the feeling that I’m getting close to passing out.

    I haven’t completely lost consciousness, but I’ve experienced that tunnel-vision, I’m-about-to-black-out feeling.

    That’s difficult to ignore.

    Bundle branch block itself may cause no symptoms, but fainting or feeling as though you’re going to faint can occur in some people with conduction problems and deserves medical evaluation.

    But there’s an important distinction in my situation:

    We don’t know that my LBBB is causing these episodes.

    I have several things happening with my heart.

    I have persistent atrial fibrillation.

    I have heart failure.

    I have LBBB.

    I’ve had pauses recorded.

    There are also medications and blood-pressure changes that can potentially affect how I feel.

    So I’m not going to pick one condition and declare that I’ve found the culprit.

    That’s exactly why having long-term rhythm monitoring can be useful.

    If I report an episode and there’s a corresponding rhythm abnormality at the same time, that’s useful information for my doctors.

    Then There’s the Sweating

    Another strange symptom I’ve been experiencing is profuse sweating, particularly with exertion or heat.

    And I don’t mean getting a little sweaty because it’s hot outside.

    Sometimes I’m drenched.

    Is that LBBB?

    Heart failure?

    Medication?

    Blood pressure?

    Something completely different?

    I don’t know.

    And I’m deliberately not going to claim that LBBB causes it just because LBBB happens to be one of my diagnoses.

    One thing chronic illness has taught me is:

    Having a symptom and having a diagnosis doesn’t necessarily mean the diagnosis caused the symptom.

    Sometimes figuring out that connection is the hardest part.

    Will I Eventually Need a Pacemaker?

    That’s the question hanging over all of this.

    The answer right now is:

    Maybe.

    Developing LBBB after TAVR doesn’t automatically mean someone needs a pacemaker.

    Guidance from the American College of Cardiology describes monitoring patients who develop new conduction disturbances following TAVR and considering additional testing or a permanent pacemaker depending on how those abnormalities progress.

    My doctors are monitoring the electrical activity of my heart, the pauses, my symptoms and whether anything changes.

    If the conduction system deteriorates further, or if my doctors determine that the electrical abnormalities and symptoms warrant pacing, then a pacemaker could become part of my future.

    But we’re not there yet.

    For now, I have the loop recorder.

    We collect information.

    We watch.

    And we make decisions based on what that information shows.

    ❤️ Greg’s Take

    When I went in for my TAVR, my thinking was pretty straightforward:

    Bad valve. New valve. Recover. Move on.

    Yeah.

    It didn’t exactly work that way.

    The new valve addressed the severe aortic stenosis, but somewhere along the way the electrical wiring of my heart decided it wanted to join the story.

    I developed LBBB.

    My hospital stay became four days longer.

    I had to make a decision about long-term heart monitoring.

    I chose a loop recorder.

    Now my heart essentially sends in a monthly report card, I’ve had pauses recorded, and I have a way to mark the times when I’m experiencing something unusual.

    And someday I may need a pacemaker.

    Or maybe I won’t.

    That’s one of the frustrating things about chronic illness. Sometimes there isn’t an immediate answer.

    Sometimes the answer is:

    We’re going to watch it.

    Before all of this, I probably would have found that incredibly frustrating.

    Now I’m beginning to understand it.

    Not every decision needs to be made today.

    Sometimes collecting information is the next step.

    So my loop recorder keeps watching.

    My doctors keep monitoring.

    And I keep learning more about the electrical system of a heart that I never expected to know this much about.

    Apparently replacing the plumbing wasn’t enough. I needed to learn about the wiring too.

    Learn More About LBBB and TAVR

    These are some good resources if you’d like to learn more about LBBB, heart conduction problems and what can happen after TAVR:

    Mayo Clinic — Bundle Branch Block: Symptoms & Causes
    A straightforward explanation of bundle branch block, the heart’s electrical system and possible symptoms.
    Mayo Clinic: Bundle Branch Block Symptoms & Causes

    Mayo Clinic — Bundle Branch Block: Diagnosis & Treatment
    Information about diagnosing bundle branch block and situations in which treatment such as a pacemaker may be considered.
    Mayo Clinic: Bundle Branch Block Diagnosis & Treatment

    American College of Cardiology — Conduction Disturbances After TAVR
    A more technical resource discussing monitoring and management of conduction problems that develop following TAVR.
    ACC: Conduction Disturbances After TAVR

    American College of Cardiology — New LBBB After TAVR
    Information from a large registry analysis looking specifically at patients who developed new LBBB after TAVR.
    ACC: New LBBB After TAVR

    Medical Disclaimer: I am not a doctor or medical professional. This article describes my personal experience with TAVR, left bundle branch block, heart-rhythm monitoring and chronic illness. Everyone’s medical situation is different, and my experience should not be used to diagnose or treat a medical condition or determine whether someone needs a pacemaker or other treatment. Always discuss symptoms, test results and treatment decisions with your doctor or other qualified healthcare professional. If you experience symptoms that may represent a medical emergency, seek emergency medical care rather than relying on a monitoring device or information on this website.

  • But You Don’t Look Sick

    But You Don’t Look Sick

    ”But you don’t look sick”

    I understand why people say it. From the outside, I may appear okay. I can still drive, carry on a conversation, laugh, and have days when I seem like my old self. What people cannot see is how much effort those ordinary things can require—or how physically and emotionally exhausted I may be underneath the surface.

    I live with persistent atrial fibrillation, heart failure, and left bundle branch block. I also have severe arthritis in my hips. Together, these conditions have changed what my body can do and how much energy I have available each day.

    Walking even a short distance can wear me out. The pain in my hips is part of it, but my heart also does not tolerate exertion the way it once did. A rollator or walker can provide support, but using one still requires energy and stamina. Some days, I simply do not have enough of either.

    There are good days, and I try to celebrate them. Lately, though, the difficult days have outnumbered the good ones. That can be hard for other people to understand because chronic illness does not always change the way someone looks.

    People Remember Who You Used to Be

    Friends and family remember the person I was before all of this—the person who could go almost anywhere, work on things around the house, walk through a store, and handle everyday problems without having to calculate the physical cost first.

    I remember that person too. I miss him.

    I want to be able to walk through a grocery store without wondering whether I will make it back to the car. I want to go to Home Depot, find a part, come home, and fix a toilet without turning it into a major undertaking. Those used to be ordinary errands. Now the walking, standing, hip pain, and fatigue can make them impossible.

    My appearance may not have changed dramatically, but the way my body operates has.

    That difference can be difficult for friends, family members, and even strangers to recognize. They see what I look like today and compare it with what they remember me being able to do. They cannot feel my heart working, the weakness in my body, the pain in my hips, or the exhaustion that can arrive without warning.

    No one else can fully know what living inside my body feels like.

    Learning Different Ways to Live

    I have had to find ways around some of these limitations. I order many household items from Amazon. We order groceries through Walmart, and I use curbside pickup so I do not have to walk through the entire store.

    I can still drive, which gives me some independence. The real difficulty usually begins when I have to get out of the car and walk, stand, lift something, or remain active for very long.

    These changes may look like conveniences from the outside, but for me they are adaptations. They allow me to keep participating in life while respecting what my body can currently handle.

    Adapting does not mean I am lazy, and it does not mean I have given up. It means I am learning how to live within limits I never expected to have.

    The Recovery I Expected

    When I learned that I needed my aortic valve replaced, I believed the process would be straightforward: have the procedure, take some time to recover, and eventually return to being myself.

    That is not how things unfolded.

    The valve replacement addressed an important problem, but it did not erase every other condition or return my body to the way it once was. Life still had more challenges waiting for me. I continue to live with heart failure, atrial fibrillation, LBBB, arthritis, fatigue, and uncertainty.

    That realization has been difficult. Recovery is not always a straight line, and a successful procedure does not necessarily mean everything goes back to normal.

    What Comes Next?

    That is a question I ask myself often.

    I do not know exactly what life has in store for me. I know my artificial valve requires lifelong monitoring, and I know my health may continue to change. Some days I wonder whether this is the best I am going to feel. Other days I still hope there are adjustments that could help.

    I am working with my doctors to see whether different medications, treatments, or other changes might improve my symptoms and quality of life. There are no guarantees, but I am not finished looking for answers.

    For now, I take things one day at a time. I adjust. I rest when I need to. I appreciate the good days when they arrive, and I try not to let the difficult ones convince me that there will never be another good one.

    I am not sharing this because I want pity. I am sharing it because appearances rarely tell the entire story.

    Someone can look fine and still be fighting exhaustion, pain, fear, grief, and a body that no longer works the way it once did. If someone tells you they are struggling, believe them—even if they do not look sick.