So when is the payoff?

Three months

by Gemita - 2023-08-12 15:23:17

Of course, we are not comparing like with like since I am certainly no athelete like yourself and I am much older, but I am fairly active, walking and gardening.  I have Sick Sinus Syndrome (tachycardia/bradycardia syndrome) and experienced syncope, long pauses and a very low heart rate before my pacemaker.  It took a good 3 months for my heart to settle and to get used to dual chamber pacing.  I called this my healing period and the healing period will be different for each one of us depending on so many other factors.

When I first came out of hospital following implant, my heart went into overdrive and started throwing out all sorts of unusual, new arrhythmias and at that stage I felt I had made a bad decision to get a pacemaker.  I initially felt worse, even though the pacemaker was clearly preventing fainting episodes.  However by 3 months, my arrhythmias had calmed, my heart starting beating at a steady, regular pace again and I felt like a new person with a higher heart rate (set at 70 bpm).  I am 100% right atrial paced, with very little ventricular pacing.  Atrial pacing suits me and helps to control my atrial arrhythmias.  I have no trouble exercising vigorously if I need to, but with arrhythmias I need to take beta blockers for intermittently high heart rates and these can make me prone to fatigue, brain fog and laziness.

So to answer your question, I had to go through 3 months of turmoil before there was calm.  Perhaps during your appointment to look at your wound, they will have a quick look at your device downloads.  I do hope so and that you will have the opportunity to discuss your recovery concerns with a technician.  It will get better

How long?

by Theknotguy - 2023-08-12 17:22:43

You ask a very good question.  How long until you feel better? And, as you indicated, it depends upon the person and the situation.  But I'd like to give you a different perspective.

I'm walking down the trail with the two dogs.  A heart patient with medication.  Doing OK, not great, but a lot better than if I hadn't taken any medication.  I experience what you see in the old B&W movies where there is a circle and the screen goes black.  Only in this case it was my eyesight.  I woke up a short time later to see another person on the trail and a woman is asking me if she can use my cell phone.  I wake up a little later to feel my wife stroking my cheek.  Wonder why?  I have periods of where I know people are doing things and people are telling me not to move my leg.  Then total blackness.  I finally wake up and I have a woman telling me I've been down too long.  I need to get up.  She says I'm in a hospital - I
kinda figured that out.  I have a pacemaker - that explains the sore shoulder.  It Wednesday.  What??? Wednesday???  Last I knew it was Friday.  I'd been in an induced coma for six days.  

Broken ribs on the right side.  Collapsed lung on the right side.  Chest tube on the right side.  Broken ribs on the left side.  All from people doing CPR.  To say they had beaten the stuffing out of me was an understatement.  Super sore throat from being intubated.  Then, of course, the heart issues and the pacemaker.  

Time from recovery for the pacemaker was nine months. Mainly because they had beaten the stuffing out of me.   Time for recovery for the pounding I took from the CPR was two years.  Time for recovery for the broken ribs was ten years.  Time for recovery for the chest
tube? I don't know as I'm still recovering.  

For you, it may be six to nine weeks until all the skin heals. You can work with a qualified medical trainer who will help you with muscle issues and soreness.  After that, work with your EP about doing rate adjustment on your pacemaker.  It may take them a few months to get it right and a few months for you and your body to adjust to life with the pacemaker.  Then you should be getting along fairly well.  

While my situation sounds bad, my other option was being dead.  And the medical people will tell you that when you need CPR, you are dead - and I can tell you from past, personal experience it isn't any fun.  

I enjoy every day even with the pain as I'm now able to lead a "normal" life.  My suggestion for you is to  stop complaining about how long it will take to get back to "normal" and to be happy that your pacemaker will give you the opportunity to lead a fairly "normal" life.  One you may not have had without the pacemaker.

Oh, and I did some complaining.  My EP looked at me and said, "You're alive." Meaning a lot of his other patients didn't make it even with the pacemaker.
 

Thanks for the replies - any others?

by Aintgotrhythm - 2023-08-12 17:58:29

Thanks very much to Gemita and Theknotguy for their replies and the details into their recovery post PM. Despite the fact that our circumstances are very different (that's quite the story Theknotguy!) it's helpful.

Although I obviously want to feel "good" as soon as possible, I'm fully bought in to the fact that it's a process. I expect I'll need some settings changes but I wanted to give this some time and that's part of the reason I asked. This is obviously a "new normal" for me so I have no idea how I'm supposed to feel and that's why I'm asking for others experiences. If the responses were uniformly "I felt fantastic same day of implant" then that would lead me to believe something was amiss and I'd contact my EP. Knowing that it has taken others a while to start feeling good again calibrates me a little.

Almost immediately

by crustyg - 2023-08-12 18:25:22

PM implanted on Wed, out on road-bike on Sunday, felt better than I had for months.  Also have SSS+CI, but am lucky enough to have a decent AV-node pacing clump that can get me to about 115BPM, but it's a junctional rhythm so no A=>V synchrony.  A-paced at that rate delivers about 20% more blood per heartbeat, which is why it felt so much better.

Resting HR at implantation 42BPM, so falling asleep wasn't great before PM as I had 42 thumps in the chest (enlarged heart), so 50 much smaller, less powerful beats was much nicer.

And very little post-op pain (no sense, no feeling), *and* the incision was anaesthetic for about a month afterwards, as the nerve supply had been cut.  The implantation wasn't so nice, done under local which had worn off completely towards the end (quite a long delay before the subclavian vein sheaths could be inserted), so really quite painful.  Felt the anchor suture and all of the skin closure.  Pocket creation hurt a lot (always does) and the sheath insertion was also very painful (no local there).

But from the post-op pain survey, it's clear that I'm in the minority.

How long?

by AgentX86 - 2023-08-12 19:36:39

I was one of those who felt 100% better, turbocharged even, before the let me off the table (a few hours because of the femoral vain access).  I didn't have CI per se because I had no longer had atrial function at all, and paced only in the ventricals.  My EP set the rate a lot faster than I was used to (80bpm vs. 40-50bpm), so that difference probably accounted for the supercharging.

You said that you had a first degree heart block.  Taken alone, this is rarely any problem at all. My wife has a first degree block found by her GP.  When my cardiologist looked at her EKG, didn't even say anything until we asked,  His attitude was "so what? A lot of people your age have it but it's nothing to worry about". Then he scheduled another appointment for a year out.

CI, and the associated Bradycardia, is a problem, obviously.  You're in very little danger of syncope, or even near-syncope, but you may need some serious adjustments to your pacemaker. CI prevents your heart from adjusting to the oxygen needed to keep you going.  Your pacemaker has to do this function but react to blood chemistry.  The pacemaker tries to guess the appropriate rate but it needs tuning to try to match the body's needs.  I suspect this is what's happening.  You need a tune-up.  I don't know if they'll do it this early but perhaps you should ask when you're there.

Great replies!

by Aintgotrhythm - 2023-08-12 21:03:30

Thanks to all of you that have taken the time to respond, it has been very useful to me. I have to admit that I'm more than a little envious of AgentX86 and Crustyg feeling better immediately but think AgentX86 nailed it: I need a tune-up. 

As I said previously, that's the biggest reason I asked the question. I'm new at this so really don't know what to expect. I do feel somewhat better than pre-implant and certainly feel good enough to give it some time so that's my current plan. I've an appointment for 5 weeks post implant and will have enough of a track record at that point to be able to say a little more definitively what I'm experiencing.

Keep the responses coming - very interesting reading about the varied experiences that people had post-implant and I expect others who happen on this thread in the future might find it to be of value. 

Post implant

by Lavender - 2023-08-12 22:19:17

I didn't have a lot of swelling post implant. Pain was manageable with Tylenol. My neck hurt, my shoulder, left upper back and arm hurt. I couldn't lean over without a weird feeling in my throat and chest. My heart felt like it was racing. I was anxious and no longer trusted my body. 
 

I took short walks on my street soon after but I felt out of sorts. I felt fragile. My body was healing but mentally I was exhausted. Sleeping was uncomfortable no matter how I laid. Finally, propping with pillows helped. 
 

I have complete heart block-my AV node is done and I have left bundle branch block. I had fainted 26 times in the prior six months. They initially set my rate at 70 bpm. I was used to a very slow heartbeat beforehand and hated the fast rate. 
 

At one week post implant, I went in for the wound check and was telling the cardiologist I couldn't tolerate the fast heartbeat. She said I had to deal with it for another month til the leads embedded into the heart with tissue. At five weeks post implant, I had my first pacemaker interrogation. The rate was dialed back to 60, which was so much better. 

I did have two woozy spells but both were hydration issues-one of not drinking enough water and being in the heat, and one of drinking too much water which depleted my salt content.

The neck, shoulder and arm pain lasted til the seven month mark. Then I noticed that I had my first day that I forgot about having a pacemaker. 

Therapeutic massage therapy by a licensed masseuse fixed the arm and shoulder. I still sleep with a small pillow pressed into the pacemaker. I use a body pillow and lie on my right side with it between my knees. I can now fall asleep on the left side but not all the way leaning in, I am partly on my back. 
 

The payoff??  That was immediately upon the pacemaker being inserted. No more fainting. No more near death experiences. No more fear of driving. My heart is fixed. I had increasingly longer pauses beforehand. The longest was 33 seconds. Without the pacemaker, I would be dead. I'm blessed to have already had two and a half bonus years beyond my heart's natural expiration date!

Felt Better Immediately

by MathTeacher - 2023-08-12 22:49:27

I hate to make you feel worse, but when the nurse was wheeling me back to my room right after surgery, I remember thinking, "Wow; I can feel the difference already!"  I have SSS and probably never knew what a heart was actually supposed to beat like before then.  

Hope they can make some adjustments, so you can feel better soon.

Hi MathTeacher

by Aintgotrhythm - 2023-08-12 23:00:48

Doesn't make me feel worse at all - in fact the various replies of "I felt better immediately" are rather encouraging. I know the path to getting a pacemaker is wildly different among all of the people who are here but I think with a good EP and PM tech that it's only a matter of time really before anybody (including me) can get to where they're feeling better.

I'm an optimist by nature and generally feel like things will work out eventually. I've got a good EP that I have confidence in so I think it's only a matter of time before I get sorted. Sure, it would have been great if I'd have jumped off the operating table saying "I feel great" but as I said previously, I think it's a process and I'll eventually get there.

So glad to hear you felt better right away!

Still here, that's good enough

by John_Locke - 2023-08-13 05:56:15

My situation is a bit different from yours but since you asked for perspectives.. 

I was asymptomatic, no fainting, no blackouts, no issues exercising etc - just the occasional big "oomph" in the chest that I've come to associate with the heart starting after pauses / skipped beats. I've lived like this for 20 years knowing that I have something called an AV block though the doctors didn't seem think it was worth doing more than monitor so neither did I.

I now recently had a reason to get it all checked out again and got to talk with an EP who explained in indirect but clear terms that they can't really say what's causing a 5 second pause and can't really guarantee that a 5 second pause doesn't turn into 10 or 15 or more, hence the strong recommendation to get a pacemaker.

I'm no different now after the PM other than the fact that I've mitigated the biggest risk of my life suddenly ending. So the payoff? Peace of mind.

Immediately

by Aberdeen - 2023-08-13 12:14:40

I had bradycardia- 36-40 beats per minute. After the pacemaker operation I felt better immediately and once the swelling went down and stitches were removed I had a new lease of life.

How long?

by atiras - 2023-08-13 17:22:41

It's varied.

My first pacemker (2018) was for atrial fibrillation as part of Pace and Ablate. Once the AV node ablation was complete, I no longer felt the arrhythmia at all (a huge relief after years of an irregular pulse averaging 145). I almost skipped out of the hospital all the way up the hill to the car, which would have been impossible beforehand.  Wound healing was fast; bruising was minimal. We shall pass over the fact that the PM shifted into my armpit the first time I slept on my left side after two weeks and pressed on the nerves, so the pocket had to be remodelled and the pm repositioned.

We will also pass over the fact that a few days after the pm started work, once again I had swollen legs and breathlessness. Oh, said the relevant consultant, you have heart failure (HFpEF).

Fast forward to 2021. I had an SCA, and acquired an ICD as a consequence (Luckily I was in hospital because I had suddenly developed bigeminy and called an ambulance for myself. They skipped the CPR piece and went straight to defib so I was spared the skeletal and lung damage.) Again, fast healing but a little more uncomfortable as I developed a large pocket hematoma which took a while to resolve. Made no difference to how I felt, except it was good to have that insurance policy.

Seven months later in 2023 I had a heart transplant.  That made a massive difference. The ICD was removed, leaving me with a lot of scar tissue in the pocket but again the wound healed quickly.

Fast forward again to last month. Some episodes of feeling faint, controlled by the Valsava manoeuvre, but I stopped driving as a precaution which had a major impact on quality of life (I live in a small village with no public transport.) After a 48 hour monitor the transplant team rang to say: come in - you need a pm immediately. Intermittent high grade heart block with ventricular standstills, and the frequency of episodes is increasing. So now I have another pm as an insurance policy on my right side this time and have not felt faint since, so am happily driving again. Wound is fully healed, next to no bruising, I'm already sleeping on that side. Just have to dig out my silicon scar sheets to ensure it doesn't form a ridge.

I guess I'm lucky that my PMs haven't needed a lot of adjustment to settings because they have all been doing relatively simple jobs. For the first, there was some tinkering until they realised that the problem wasn't the settigs but undiagnosed heart failure. For the second, they just replicated the settings of the first. The current one is just sensing atrium and ventricle and pacing the ventricle if it doesn't follow the atrium, so again not much adjustment needed.

immediately, but...

by Julros - 2023-08-13 19:36:30

I had atrial flutter with a heart rate of 40. After my ablation and pacer implant, I felt like a fog had lifted; colors looked brighter, food tasted better, and I was 'awake" for the first time in months. But then, the pain in my operative site took over. I couldn't sleep, I couldn't tolerate my clothes touching it, and even walking was too jarring. Cardiology clinic just tsk tsk'd, and assured me it didn't look infected. At about 3 months, I was walking and started jogging, but my heart rate was set at 120. They turned it up to 130, sl. increased the rate response.At 6 months, when I finally saw the doctor, he said due to my age (63 at the time) he wouldn't turn it up past 140. After a few more visits and dealing with techs who scoffed at my complaints about lack of running endurance, I was able to schedule a treadmill test with the manufacturer rep. He optimized my settings, with a high rate of 160. I have since changed offices and doctors, had a different device implanted, and that finally ended the site pain I endured for 2 1/2 years. 

It's too soon for me to tell

by rosebud120 - 2023-08-20 17:49:46

I was primarily asymptomatic until I had 4 episodes of rapid heartbeat, dizziness, weakness, and disorientation. Then I was on a 21 day event monitor and the rest is history. 

Just had my implant on July 18. Just saw my cardiologist on Friday, Aug 18. He said that my device scan and my EKG looked great. But I told him I felt like crap. So he seriously started listening to me. 

The terminology is all new to me. Before the implant he told me that I have tachy-brady syndrome. 

Last Friday he told me that I have 2:1 heart block. He loves to scribble notes. So his note also says SVT. 

I can relate Aintgotrhythm to your sleeplessness, heaviness in the chest, low energy and light headedness. I also have palpitations and my heart flutters.  I applaud you for being able to be so physically active. I can only walk 100 feet before I get winded. Which terrifies me. My goals are to get back to swimming daily, walking and hiking. I'm going to AZ for the winter so that I can be more active.

My doctor changed out my blood pressure medicine and is adding a beta blocker. 

From the other responses to your post and from what I have experienced so far--be prepared to tell your doctor how exactly you have been feeling. I told my cardiologist that I was not prepared to feel so lousy immediately after implantation. There is a very clear distinction between your device working fantastically and how you feel. 

Good luck and I hope you will post an update.