Getting a Pacemaker

[MarkU]

Haven't posted here in a long, long time, mostly because of nothing that interesting to report. Been leading a boring life with my St. Jude valve (not a bad thing...)

Plus, I've felt like I had less and less to contribute since I haven't really kept up with all the new developments since my AVR almost 17 years ago.

Been leading an active lifestyle since my AVR: over 20 triathlons, 5 half marathons, numerous 5K's, etc. Due to knee problems stopped running and became a full-time Masters swimmer two years ago.

A few weeks ago I started noticing shortness of breath after mild exertion and trouble sleeping, symptoms I hadn't experienced since prior to my AVR long ago. First noticed it at Masters swimming practice when I started having problems swimming more than 50 meters in my warm-up, when I usually can cruise through the first 600 meters.

Saw my cardiologist yesterday and my EKG shows my heart has become "confused" electrically due to my missing valve and is skipping every other beat, so I'm stuck at about 38 bpm.

Bottom line is that I'm getting a pacemaker implanted on Thursday morning. My doc told me that if I wasn't in such good shape from swimming, he would have sent me directly to the hospital for the procedure. By being able to wait a couple of days I can get my INR down to an acceptable level without having to do it by transfusion and the associated risks with that.

Will be in the hospital overnight and should be released first thing Friday morning.

Have to stay out of the pool for two weeks to let the incision heal, and can't do freestyle or butterfly (my favorite stroke) for another couple of weeks after that. But after four weeks no restrictions at all on my activities.

My resting heart rate has been in the mid-40's, so we're going to set it initially at 50 and see how that works for now. Will adjust as necessary.

Just thought I'd share that for anyone who might be interested.

 

[alpha 1]

Thank you for sharing, have been trying to find out whatever I can about pacemakers because I'm supposed to get a tavr just to try to buy some time to get an on x because like you said about the transfusion, I need several other surgeries and being on the blood thinners at this time isn't good for my situation, and rather than keep going through redos they thought tavr might be an option. Cuz if I get another tissue valve then there would be a third surgery. One big problem with tavr is more of a need for a pacemaker, so what did your dr say about it, is it pretty safe, do you know if you would be able to get another open heart surgery with one. Let me know anything you find out. Don't really want one. I'm 37 and just want to live my life. Hate to keep going through all of this. You are lucky to have the mechanical valve. I wasn't on here for awhile either. Some of the people that I knew haven't been on for a long time. Let me know how you are. Thx

 

[DanielB]

MarkU, I too have been away from the site for for a while too. Similar reasons, but checking in from time to time to see if I can learn something new or add something. This I can add something to. I have a pacemaker. Mine was implanted about nine months after my AVR when I noticed that I felt sluggish walking up hills. My heart rate then dropped to around 40 resting, which worried the cardio a lot so they tested and tested before learning I was going into heart block under physical stress (LBBB). My heart was adapting to make sure it stayed in rhythm and slowed down. Sounds a lot like your story. Mine was implanted July of 2012 and I have to say it has worked out fine. I had them do a few tweaks in the first few months, but, since then, all is great. My natural resting rate is now around 70 and I am completely unaware of it doing its job. I do miss having the ability to have MRI's, but it beats a heart rate so low its scary. I have heard of a pacemaker that is out now that allows MRI's, so, if that interests you, it may be work asking your electrophysiologist about it. Best wishes on the proceedure

 

[epstns]

Welcome back, all ye old timers!

I, too, have a pacemaker. Mine was implanted just a few days after AVR, when my heart would just stop for 20-30 seconds at a time. Lots of other rhythm issues after AVR, too, but the pacemaker has fixed me up wonderfully.

I'll second the notion that it really doesn't get in my way at all. As I've told many others, the only time I really know I have one is when I look in the mirror with my shirt off. It just works. Yes, it did take some time to get the settings right, but once that was done, it just takes care of me. Without it, my resting heart rate averaged in the low 40's, with looooong pauses. Trust me, it is no fun to be in the hospital and watch your own heart monitor go flat-line.

I'm now on my second device and second ventricular pacing lead. Last summer, when my pacemaker still had about a year of battery left, the ventricular pacing lead failed and my resting heart rate went back down to 48 BPM. They used a special laser device to remove the 5-year-old lead and replaced it, then they implanted a new pacemaker while they were at it. I had the usual restrictions for a new implant - no driving for a week, and no reaching above shoulder level with the left arm for 4 weeks. Piece of cake, compared to some other recoveries we've been through.

I'm still in the gym 5 days a week, after my usual 10-hour work day (at age 69, no less) and make it through the days just fine. I can't run any more, either - my knees said so. After over 30 years of running, jogging, etc., I am reduced to spending my cardio time on the elliptical machine.

Oh. . . one thing that may make you crazy. If you try to use a heart rate monitor, many of them go nuts with pacemakers. I often see a reported rate of either half my actual rate, or double. My pacemaker device clinic manager says to just go by how I feel. Don't worry about the readings unless something feels really "off" and if that is true, then I shouldn't be exercising on a machine at that time.

Be sure to discuss your lifestyle with your doc before they choose your device. Some of them have more sensors and demand compensation features than others, and as a highly active person, you need the one with all the bells and whistles.

 

[alpha 1]

Epstns,
Didn't you say that you may require another surgery in the future? I was worried about if you could get heart surgery with the pacemakers, does it just work like your own electrical system?

 

[epstns]

alpha - I have never been told that my pacemaker poses any additional problems if I need a repeat valve replacement. Although my permanent pacemaker is connected to my heart, I imagine that they would also connect temporary pacing wires to my heart in a repeat surgery just as they did in the initial operation. I guess there is a possibility that they might have to relocate the permanent leads after a second open-heart surgery, but I would be able to rely on the temporary pacing system (external device, like the first time) until they were ready to do that. These days, they can remove old pacemaker leads using a laser device, so they wouldn't have to abandon the old leads if they needed to install new ones.

I think the presence of a pacemaker today only adds a relatively minor complication in the re-operation scenario. I'd be really surprised if it was any large concern to the operating teams.

 

[alpha 1]

Thanks Epstns, just trying to find out everything I can before surgery whether its tavr or savr. I'm just worried cuz I have the right bundle branch block. It isn't a good thing going in I guess. Just have to wander what causes it. I had it before the last surgery.

 

[MarkU]

Update:
Had my pacemaker implanted on Thursday. My HR had dropped to around 28 bpm, which was continuously triggering the alarm on my monitor as I waited in pre-op (the nurses didn't know how to reset the alarm set point below 30). I felt a little light-headed, but really not too bad, considering. I had stopped my Warfarin on Sunday, so my INR was down to 1.46.

I was told to report at 8AM for a 10AM procedure, but as to be expected, they didn't actually start until 12:30PM. They had given me a couple of Valiums in pre-op, so was feeling pretty mellow by the time they wheeled me into the OR.

The surgical nurses & techs had most of the drapes in place and we were waiting on my doctor when I happened to mention that I was left-handed. That prompted a discussion of whether they should do it on the right side as opposed to the left. Told them not to worry about it as I didn't want to spring any last minute surprises on my doc or delay things by having to changes to the drape set-up.

Doc got right to work when he arrived and was done in about 45 minutes. They kept me in recovery for about 30 minutes and then up to my room.

Spent the night there. Was tired, but didn't get much sleep as they woke me up every two hours all night long to either take my vitals, offer me some Tylenol or draw blood.

They also had me wear a sling to prevent me from inadvertently raising my left arm while I slept, which felt like sleeping in a straight jacket.

A St. Jude tech came in early the next morning to check out the operation of the unit. Doc came in after that to check me over and make sure everything was OK before signing my release papers. After a two-hour wait for the hospital to process all the paperwork I finally got out the door around noon.

They had restarted my Warfarin on Thursday night, but they wrote me a script for a Lovenox bridge through Saturday. (one of the nurses talked about having me stay in the hospital through Saturday so they could give me the Lovenox injections, until I convinced them that I knew how to do it myself).

They told me to take the covering dressing off the incision site on Sunday, but to leave the Steri-Strips in place over the stitches until my follow-up visit next week, or until they fell off on their own.

Was told not to get the site wet for two weeks and not to lift my left arm above the shoulder for a month.

My "normal" RHR had been about 54 bpm, so they set the pacemaker at 58 for now. Doc said to see how that worked and that we could fine-tune it down the road.

So far, so good.

Mark

 

[epstns]

Sounds like you're right on track, Mark. The restrictions are standard - I went through the whole bit all over again last summer when I had my ventricular pacing wire and device replaced. The sling, even though it was only in place for 24 hours, was the worst for me. Both of my shoulders are troublesome - probably from 40+ years of exercises and weights, and having the left shoulder immobilized brought it to near "frozen" state. For that one day in a sling, I paid in pain for 3-4 weeks. The restriction on arm/shoulder motion for the first 4 weeks wasn't much of a problem. I also knew from before that even if I forgot and moved it higher, the odds of dislodging the lead were extremely low, so I didn't worry much. BTW - they didn't want me to drive until after my first post-op exam, which was in about 10 days.

The biggest restriction for me was that of not being able to exercise. My usual morning routine includes both free weights and push-ups, and for the first month I could do neither. Part of me kind of enjoyed the "vacation" but I felt it when I resumed normal activities. At my age, it seems that if I take one week off, it takes about a month to regain muscle tone to the previous level.

This time my tape strips got really raggy-looking before they finally came off. I did not have sutures for external closure, as they used the surgical version of super-glue. I did have internal sutures, but these were the dissolving type. I was told not to soak the wound site, but that showering was OK. I ended up trimming off the dangling tips of the tape strips so that they didn't look like a spider on my chest. After the 4-week restriction period they told me to peel off whatever tape strips remained. Some baby oil helps to dissolve the remaining residue.

The next item to deal with is the various accelerometer and rate-response settings. There are likely a couple of features that can be enabled in various combinations and at various intensity levels to ensure that the pacemaker allows you normal rate increases when your body's work load requires it. These are set, but as long as your body does its own pacing adequately, the pacemaker just idles and waits until it is needed. If you need to have rate-response enabled and it is not, you will quickly realize it -- you will become short of breath under exertion. If it is set properly, you won't even realize it is there. It just works.

Congratulations on successfully joining the ranks of the Energizer Bunnies. My mom must have been bunny #1 because after she received her pacemaker, she just kept going and going and going. . .
Now it is our turn.

 

[alpha 1]

Mark, I didn't know that you could be off of blood thinners for 5 days if you needed surgery for something else. Then why the lovenox.

 

[ottagal]

Just seeing this, Mark. Glad you have this 'behind' you and start feeling like your 'new,old' self again.

 

[MarkU]

Mark, I didn't know that you could be off of blood thinners for 5 days if you needed surgery for something else. Then why the lovenox.

It takes Coumadin about three days to metabolize through your liver. The Lovenox injections provide short-term anti-coagulation protection while you are either going off or going back on Coumadin. It requires getting an injection every 12 hours.

Because my INR was pretty high in Monday afternoon, about 3.9, my cardiologist thought I would be okay just stopping my Coumadin until the surgery on Thursday morning and not bothering with the Lovenox bridge. Turns out that my INR had dropped to about 1.4 that morning, so it worked out well.

Afterwards they had me take the Lovenox while giving the Coumadin time to get back into my system.

I've done Lovenox bridges several times since my AVR when I had other invasive procedures, most often for colonoscopies.

Not really a big deal once you get comfortable with giving yourself the injections.

Mark

 

[pellicle]

Mark, I didn't know that you could be off of blood thinners for 5 days if you needed surgery for something else. Then why the lovenox.

To extend what Mark has said, lovenox is a also "blood thinner", it acts to do almost exactly the same thing as warfarin.

The reason it's popular is that warfarin is slow to take effect (the three days Mark mentions is about right) and lovenox (which is a brand name of heparin) takes effect much faster and leaves much faster.

This allows the medical team to control your anticoagulation much more tightly so that you can have unimpeded coagulation post surgery (where it is needed) and then when tissues are mending restore your required level of anticoagulation as needed for your valve (or other condition such as DVT).

As the vast majority of patients are on AC therapy for non valve issues their risks may be different to ours (as valvers) and so these protocols are usually designed for them. In Australia at least different protocols are emerging where we who have low risk simply discontinue warfarin and may have a brief use of heparin in the hospital or simply resume warfarin.

 

[Duffey]

Glad all went well, Mark, and glad that you posted. I think people just going through valve replacement for the first time find it reassuring when you mention your surgery was seventeen years ago.

 

[Nocturne]

Mark, I don't know you but I wish you the best. 17 years! Way to go!

I'm ignorant about pacemakers, and curious. I get that they set your RHR, but what happens when you exert yourself? Do you have to reset the pacemaker to a higher rate before you swim? That doesn't seem very convenient, and I imagine it can't be the case. But I don't know how the pacemaker adjusts your heart rate when it needs to be higher (how does it "know"?)

 

[pellicle]

Mark

I got distracted answering alpha 1 and forgot to say:

I hope you are doing well ... today is Friday here in Finland, so I'll assume you get home soon.

You probably know I don't have faith in much, but I do have faith in science. So I'll also hope that served you well

Best Wishes (and fingers crossed its not a bumpy ride)

 

[LondonAndy]

I'm ignorant about pacemakers, and curious. I get that they set your RHR, but what happens when you exert yourself? Do you have to reset the pacemaker to a higher rate before you swim? That doesn't seem very convenient, and I imagine it can't be the case. But I don't know how the pacemaker adjusts your heart rate when it needs to be higher (how does it "know"?)

Pacemakers do have rate response systems - some are based on vibration (eg assuming you will be moving faster and/or bits of the body flailing about) others have some sort of piezo (?sp) electric system. But I think I am right in saying that my pacemaker, which was installed because of surgical complication when they did my mechanical valve, detects the natural signal from my AV node (subject to a minimum beats per minute setting). Also, some people have the rate response turned off for other reasons, normally older people who don't need to up their heart rate much.

 

[epstns]

The modern pacemakers do "all of the above." They do sense the natural pacing pulses of the heart, and if the pulse is present they just sit and wait until the pacemaker is needed. They also sense whether or not the natural pacing is fast enough, and step in if needed. Some patients only need pacing support part of the time, with their hearts doing a good job the rest of the time.

When one is pacer-dependent, the modern pacemakers have at least two forms of rate adjustment. One is the mechanical/electrical accelerometer, which senses motion of the body and as that motion speeds up, the pacemaker speeds up the heart. Think of running - these work well for runners. Now think of cyclists - no bouncing motion, so this sort of rate response is not effective. (Ask me how I learned about this one. . . ) The second form of rate adjustment is sometimes called minute ventilation response. This is where the pacemaker manages to sense the host's breathing rate (not sure how it does this, though) and when breathing speeds up, the pacemaker speeds up the heart. I have both of these systems turned on. They can adjust the amount of stimulus needed to trigger the response, as well as the aggressiveness with which the speed-up takes place.

When both of these systems are turned on and adjusted properly, I cannot tell at all when my pacemaker is acting and when it is standing by. I can do virtually anything I used to do pre-pacer, with no intervention or adjustment required on my part. It is all automatic and works quite seamlessly. They set your minimum heart rate, accelerometer/rate response parameters and even a maximum heart rate. Since I had afib just after AVR, mine is also set to drop my heart rate by half if it ever senses that I've gone into afib. Truly amazing little buggers, and I'd be toast without mine.

 

[MarkU]

I have my first follow up at the cardiologist's office this afternoon. My low point is set at 56 bpm, which seems to be working well, but I want to talk with them about the rate response setting. I haven't been able to do much in the past week except walk, but have noticed that there seems to be a bit of a lag in my HR based my breathing effort. Think I'd like to try upping it a bit before I try to get back to swimming at the end of the month.
I got my INR checked yesterday for the first time since I've been back on my regular dosage schedule since doing the Lovenox bridge last week. It was in range, so that was good., My BP had spiked, so not sure what to think about that; will be interested to see what it is this afternoon at the doc's.