Two weeks out

I first wrote when I was told by the second cardiologist that I needed a pacemaker. Short bio, 55 yr old female, exercise daily, fit, healthy with no symptoms. Pacemaker??? Problem was 34 bpm average but no fainting, light headedness etc. Two leaky valves and normal blood pressure. I was shocked, scared and clueless about pacemakers. This forum helped ALOT!!!

I had surgery on the 17th of April 2014, and was implanted with a Biotronek dual lead with the aid of a plastic surgeon who created a pocket through the armpit and in between my chest muscles just under the collar bone. You literally cannot see even a small rise on my chest. That's the good part.

While the pain was a lot worse from what I hear from my brethern who had their PM implanted just under the skin, it's two weeks out and I am still in pain at the surgical site but not feeling much of anything where the PM is actually resting.

My surgery lasted 4 hours. Seriously!!! My Dr has the patience of Job, thank God, because he said it took 2 hours alone just to get the second lead (SA node) securely in place. The AV node was "easy". They did a EP study to start which confirmed I had no electrical activity in the SA node but all was well with the lower half of my heart. I guess creating the pocket and closing up took the remainder of the time.

Ok now that I've set the stage, here is what's bothering me. When my Dr asked, are you feeling better? NO!!! I didn't feel bad before and now I feel like crap. I literally could not walk and talk at the same time. My heart would race to 175bpm just from walking slowly up the stairs. I was originally paced at 70 to 130 with both CLS and a rate excellerator turned on. Whoa, what the heck are those? Now, I know. After a week of feeling lousy I went back to the Dr. All the leads, pacemaker functionality etc are working as desired BUT they agreed that the pace was a bit high for someone with a 34 resting rate. Duh??? They lowered the setting to 60 and I feel a lot better.

But, here's my issue. I FEEL my heart a lot. It freaks me out that even with minor activity I feel my heart pounding in my chest. When I measure the bpm it's around 105 but it feels like 200! I'm scared because what the heck is it going to do when I start exercising again? My Dr also strongly warned me to NOT raise my arm over my head for 6 weeks. He's terrified the leads will become dislodged. My plastic surgeon however said that would be nearly impossible as they sewed the leads to the muscles in my chest. This was almost TMI for me to hear but I guess a little reassuring.

I know I'm rambling but have read others support of venting/sharing. I hope that's true. What surprises me is my attitude. I used to feel powerful - healthy, in great shape and blessed by having a great husband, successful business, etc . Now I feel marred, less than, at risk, vulnerable, etc. That sounds so weany, I know, but I read someone who asked what the life expectancy is of someone with a PM and boy did that resonate with me.

I want my life back. I want to exercise again. I want to feel better. I want to live a "normal" life understanding there are no guarantees but now I just feel like an anvel is swaying over my head getting lower and lower. I'm not intending to be dramatic but that's how it feels. I'm depressed and scared. I hope time works its wonders.

10 Comments

It will take time

by KAG - 2014-05-03 01:05:11

to recover from the surgery. You’ve just been cut open and a foreign device was inserted into your body. From my experience, where my PM was implanted below the collar bone and just under the skin, I was sore and black and blue over my left breast and side for a couple of weeks. So I’d say give it time to heal and for your body to adjust to your new little buddy.

As far as the SOB and elevated HR that could be some anxiety causing it and you adjusting to this foreign object. Most likely you’ll need some fine tuning of your PM settings. Especially with the Rate Response turned On due to SA problems. There are many adjustments that can be made. You can do searches using the search feature in the upper right corner of this site. I’d start with searching for RR and CLS. Hopefully you can connect with golden_snitch (Inga) who is a user expert on them.

Venting is good. Getting your fears out and getting feedback will hopefully help. Remember you’re not in this alone. Many of us, if not all, were experiencing what you’re going through.

Get to know your PM techs and Drs and hopefully they are the type who will work with you to get your device fine tuned. You’ll hear that your PM is working fine and all that means is that it’s doing what it’s programmed to do. They are remarkably reliable devices. However that doesn’t mean that the programming is optimized for your activities. You have to be your best advocate for getting that done.

I found that learning about my device. Getting a copy of the interrogation report and being able to discuss the modes and settings a bit really helped when talking with the techs who programmed my device. Many people on this site can help you with learning about it.

It’s a process and hopefully you’ll soon be getting back to your normal activities. That helps a lot.

Hang in there and it will get better.
Kathy

Hang in there...it will get better!

by Dee224 - 2014-05-03 01:05:42

I know how you feel. I am a 59 yr old woman who had a pacemaker implanted in Feb after a sudden onset of Complete Heart Block (w/heart rate of 35). I went from working out in the pool 3 days a week to wondering "why did this happen to me?". The shock is tough. It's hard to realize that no matter how in control of your life you think you are...in reality you cannot control everything. Bad things happen. For us it means learning to accept a new normal...life with a pacemaker.

Try not to dwell on the negatives. Try to embrace the positives. You are alive, and it sounds as if you have a wonderful life that you need to go back to living fully! Yes, you will have some restrictions for a short while (lifting, raising your arm etc...) but time and healing will take care of those issues. Remember that we are lucky. It could have been so much worse. We don't have a terminal disease, and we can go on living life to the fullest.

Look around you and count your blessings. Take time to let your body heal, then go back to doing the things you enjoy. If you have concerns about how you are feeling physically, talk to your doctor and your pacemaker rep. You will be surprised at how much better you will feel in just a few short weeks.

Hang in there!
Dee

Hi Sethun

by IAN MC - 2014-05-03 01:05:58

I thought that CLS pacemakers were not intended to have the CLS and the accelerometer sensors switched on at the same time as they are unable to blend the signals from the 2 sensors .

It would seem that having the two switched on together certainly didn't work for you !

golden_snitch is our resident expert on various Rate Response sensors; maybe she will drop in and comment ?

Best of luck

Ian

Check with Inga (golden_snitch)

by Grateful Heart - 2014-05-03 03:05:07

I believe she can shed some light on this for you regarding CLS and RR.

In the meanwhile Sethun, please go to the search bar on the upper right hand corner of this page and type in "Some Tough Love for Newbies" without the quotation marks and give that a read.....it's the 2nd one down, written by donr.

It may take more time....2 weeks is not very long as well as a few more adjustments, not uncommon.

Talk, ask and vent here all you need. I found the more I learned about my condition and device, the more comfortable I became with it. I didn't know about this site when I had my implant. I found it more than 2 years after so good for you....that's a plus!

I recently needed some additional adjustments after 5 years so it sometimes is an ongoing process.

You'll get there.

Grateful Heart

CLS

by golden_snitch - 2014-05-03 04:05:47

Oh well...

According to the manual, it is not possible to have the accelerometer AND CLS switched on at the same time. However, I'm beginning to question this as my latest printout shows programmings for both. So, I sent a note to Biotronik, and am waiting to hear back from them. But theoretically, no, you have to chose between CLS and accelerometer, and if you chose CLS the mode will be DDD-CLS, and with accelerometer it is labled DDD(I)R. The accelerometer only kicks in if the CLS should be deactivated, that's what the manual states.

My experience with the CLS so far has been that it does react VERY sensitively in the beginning. BUT the good thing is: You can train it. If you'll go for a walk 30-60 minutes every day or several times per weeks, the CLS sensor will adjust. After a couple of days, I had my rate down to 80-90bpm when walking, while it was always at my max. CLS rate of 140bpm in the beginning. I know it feels awful to go for walks when your heart rate is up at your max programmed rate through the whole walk. I hated this. But I kept moving, every day, and it really did get better. I was wearing my heart rate monitor, and could see the changes everyday.

Also, I experienced lots of inappropriate tachycardia in the beginning, for instance, when kneeling down to bend my shoe laces, my heart rate would shoot up to 140, or even when I brushed my teeth. But this got better day by day, too.

What can also be done is to change the sensor threshold. It's nominally set "medium". If you change it to "low" or "very low" the rate response will react more aggressively, so faster and with faster rates. If, however, you change it to "high" or "very high", it will react less sensitively.

I'm in the process of getting my CLS optimized now. Just started running again. At the moment, as soon as I start running, I end up at my new upper CLS rate of 160bpm. So, now I'm trying to find out whether this will change, the more I run. At least the sensor realizes when I walk and run in intervals, and slows down a bit during the walking intervals. That's already better than during my first run-walk-interval-training.

Hope you get better day by day, too! I'll let you know when I hear back from Biotronik.

Inga

Add

by golden_snitch - 2014-05-03 05:05:11

Selwyn (another member) just reminded me of an article about a study that included more than 700 patients with CLS sensors. This following is from the article, and it supports that accelerometer and CLS cannot be switched on at the same time:

"Closed Loop Stimulation pacemakers offer accelerometer-based rate-adaptive pacing for patients who cannot be optimally treated with CLS. For example, if AAIR or DDIR is preferred medically, the accelerometer sensor will be used exclusively because CLS is currently not available for these pacing modes. Although CLS pacemakers enable either CLS- or accelerometer-driven pacing, the pacemaker is not designed to blend the signals from the two sensors to establish dual sensor rate-adaptive pacing."

http://europace.oxfordjournals.org/content/early/2012/03/28/europace.eus062.full

Two week in feedback

by Sethun - 2014-05-03 05:05:18

Wow, again, sorry for the melodrama but I cannot tell you guys how helpful your feedback is. I find myself getting easily emotional. I will respond further later but read your responses and could not wait to say thank you.

Inga and Don comments

by Sethun - 2014-05-04 04:05:12

Don,
I read your comments for Rookie PM patients. What a great job you did giving newbies sage advice while being empathetic and hopeful. The art of validation is not easy but you sure did a great job in that posting, and above. Thank you. It does help to be reminded that surgery is something that takes time to recover from but is certainly not the end of the world. I am just feeling so many new sensations its a bit confusing and scary.

Inga, I am very interested to hear what Biotronik says. Again, I'm under the impression BOTH of my settings are active. The tech went into a bit of detail how they both work and even compared the different exercising I do and how one will adjust to movement and the other to heat my body generates without rigorous movement like on a stationary bike.

I went for my first 15 minutes ride today and it felt great! No lightheadedness or weird sensations but I didn't want to push my luck so kept the speed and effort minimal. I never sweated but could tell I would if I continued. Now, going for a walk on the beach with my husband resulted in a weird heart sensation that eventually went away. Go figure.

I am amazed at reading the different stories. The variety of people and their own life circumstances is so interesting given our one commonality - our PM's or defibulators. I don't feel so alone in this and having these insights and support is critical to me moving on.

I'm detemined to follow the Dr's instructions while testing my boundaries. Taking a shower, minimal exercises, sleeping again and improving my attitide are all helping.

Thanks again for everyone for writing and sharing!!
Stacy

Some perspective.....

by donr - 2014-05-04 10:05:12

..... on what happened to you.

Take a few minutes & read a comment I made several months ago. To find it, go to the top right corner of this page; click on SEARCH; enter "Some Tough Love for Newbies" in the box & click on the SEARCH box. It will open up a list of past threads. Mine is probably the second one down. Click on it to open - it's fairly long.

Now, after you've read that (Hopefully), stop & think what they did to you.

1) cut through a piece of muscle in the armpit - OUCH!
2) Tunneled from the entry incision to the spot where the PM will take up residence, all the while, separating one layer of muscle from another.
3) Stretched out all the tissue so they could get inside & work - approximately 4 inches from the entry wound.
4) Dug around in there for FOUR hours!
5) Made enough space for a couple fingers of unspecified size - was your surgeon a petite woman who wears a size 4 dress - or an ex Rugger with giant, callus-covered hands w/ long hair between the joints?

I promise you, you will hurt from all that - even if they never put the PM inside of you. Yes, even two weeks out. That area of the body is about as crammed full of electrical & plumbing components as anywhere else.

I will NOT be crass enough to say "Get over it!" You will hurt from all of that.

What you have to do is separate the surgery part from the PM part. MENTALLY, they are two different things. Every one of the feelings you've described is very common.

Let me allay one of your fears - You will NOT be able to tear out one of those leads - THAT IS - IF the surgeon implanted everything correctly; AND you do not raise the arm above the shoulder for 4 more weeks. Your plastic surgeon told you - they sewed the leads to the muscle.

Let me paraphrase from the PM installation manual the correct procedure applicable to your concern:

1) They implant the business end of the leads into the heart walls. Either screw them in or expand the barbs (Just like a harpoon used to catch whales). By now, they are pretty well scarred over. Look at the external scar - pretty solid after 2 weeks, isn't it?
2) Place a "Thingy" (That's a technical medical term for a gizmo) right at the spot where the leads enter the subclavian vein used for access to the heart. This Thingy has a pair of ears on it so it cannot go further INTO the vein & the leads are tied off to it w/ sutures so they cannot move either in or out. Next, the Thingy is sutured to the muscle so it cannot move.
3) When they started, they chose a pair of leads that were long enough to make a loop in them for slack so you could do NOTHING to put stress on the spot where they enter the vein. (Leads are made in various lengths)
4) The loop is placed in the PM pocket beneath (Behind) the PM & the other ends are connected to the PM w/ little nuts, using an itty-bitty wrench.

ONE LAST comment - we are all different when it comes to post-op pain. I had zero pain. NEVER took a pain pill. Discomfort, yes - pain no. But you went through a lot more trauma than I did. I'm not at all surprised at how you fee.

Inga addressed the PM issues - trust her - she's an expert in that.

Hope you feel better. SOON!

Donr

CLS

by golden_snitch - 2014-05-05 02:05:20

CLS doesn't work with heat! It measures cardiac contractility in the ventricle. What your cardio describes sounds more like the difference between an accelerometer (motion sensor) and a minute-ventilation sensor. However, these both sensors don't work with heat either. I have no idea what that guy is talking about. CLS responds to all kinds of activities by cardiac contractility measuring, and also mental and emotional stress.

I haven't heard back from Biotronik, but according to all the information you get online, there is no way that CLS and accelerometer work together.

Inga

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I, too, am feeling tons better since my implant.