How Long From Diagnosis to Pacemaker

by Colesmama
2014-10-30 02:10:43
Surgery & Recovery
2378 views
15 comments

hi there, I'm new (just diagnosed with stage 2 or stage 3 AV Block type 2?) that probably makes more sense to most of you than me right now. I'm young, only 34, extremely fit (I run 5 miles every day), and other wise very healthy. But did start passing out while sitting, getting dizzy, etc so after seeing my holter strips, my cardio had me an appt with an electrophysiologist for tomorrow. He says that pacemaker is my option. I'm really scared about the surgery, especially since I'm still kinda young. But it's scary too knowing how bad my heart is "messing up" every day. Does anyone know how long it will take after seeing the EP tomorrow before he'll do the surgery? and what should i REALLY expect post op and for the rest of my life? thank you so much for any help!!!

15 Comments

pm wait time

by bluebowtye - 2014-10-30 03:10:10

Hi,

As the Knotguy says it can vary. In my case it was 5 days from my diagnosis of 2nd degree Mobitz Type II heart block until I had my PM surgery. My doc probably would have done it sooner but I was told I needed one on a Wednesday and he only does PM surgeries on Monday. I did not have much of a choice. I fainted while sitting on my couch one night and again on my way upstairs to my bedroom. Thankfully I was not driving.

It is a scary deal knowing your heart is messing up, but the PM will fix all of that. It is also scary knowing you could get dizzy or pass out while driving or doing something else where you could injure yourself or others. The PM will fix all that too. It's definitely a mental adjustment but really not all that bad. Most people are able to return to doing everything they were doing before in about a month. Some sooner, some maybe a little longer as we are all different in how we heal.

Good luck to you. You have come to the right place.

~Sheila

Depends

by Theknotguy - 2014-10-30 03:10:44

Depends upon the EP, hospital schedule, how bad your condition is. My cousin went in to see the cardiologist. Left the office, got a call on the way home. Was told to go home, park the car, and have someone drive her to the hospital. She got a PM that night. A post on this forum just before yours and the guy had to wait several weeks. Not because he didn't need it but because they didn't react quickly enough.

As for being young - you may feel young but we have people on this site who have gotten PM's in the womb and people who are in their 90's. So you're about 1/3 of the way in. You can request responses from people close to your age and see how they have responded.

The actual PM surgery and insertion are usually no big deal. If you look around the forum you'll see all sorts of posts - mostly they're positive. We have a tendency to hear about the bad stuff here so it kinda skews the type of responses we have.

You should be scared about how your heart is "messing up". It's serious and obviously you'd like to live long enough to get the PM. So I'm glad to see you don't have a cavalier attitude.

Post PM life. I can do 99.999% of what I did pre-PM. So the PM in and of itself doesn't necessarily hinder your lifestyle. I've corresponded with people on this forum who are sky diving, scuba diving, skiing, snow boarding, jet skiing, biking, racing, running marathons, etc. So limitations are mostly in your mind. (I'm still not sure why anyone would want to jump out of a perfectly good airplane.)

About 80% of what was told to me about PM's was wrong. I got a lot of good information on this site. You will also want to get on your PM manufacturer website too. They have a lot of good information. Oh, and the bad information came from medical people who should have known better. But I won't get into that here.

Post op: You shouldn't raise the elbow above your shoulder on arm on the PM side for four to six weeks. You shouldn't lift more that 8 to 10 pounds with the same arm for four to six weeks. Don't worry, you'll forget and do it anyway. It shouldn't hurt anything, just don't make it a habit. If you do anything that will pull the leads, you'll know it because it will hurt like hell. But you'll forget and do it sometime anyway. Just say, "That hurt like hell. I won't do that again!" and get on with your life. You will want to keep the arm moving so it doesn't get stiff. Mine did and I had to do extra exercise to get the arm "un-stiff". Oh, and if someone or something hits the PM or the PM pocket, that'll hurt like hell too. Usually won't break anything but it will hurt.

Oh, and you don't have to worry about electrical appliances in the home, security devices, airport security, metal detectors, getting your hair done at a beauty shop, TV towers, short wave radio, and the like. The new PM's are shielded very well and aren't bothered. You can see a lot of postings on this site about electrical stuff. Mostly we don't have to worry. If you're not sure, just ask on the forum.

The rest of your life - go out and live it. It's a big world out there - so enjoy it. Your best response to getting a PM is to live your life and enjoy it. PM's are great pieces of equipment and allow us to live a full life.

Feel free to come back to the forum and ask questions. Let us know how you are progressing. It's always good to hear the news.

My best wishes for you.

wait time 20 years :)

by Tracey_E - 2014-10-30 04:10:36

I was diagnosed in 1971 when I was 5! They didn't give them to kids back then unless it was critical so I got by without until I was 27. I should have had it in my teens in hindsight, that's when I first lost the ability to do whatever I wanted, when I started getting tired and dizzy a lot. Imo it's stupid to live with symptoms when there is a fix but my dr at the time didn't want to do a pm on someone so young. That's now a pet peeve of mine, young has nothing to do with not feeling good. Why suffer?

Being in great shape has nothing to do with your type of problem. Taking care of yourself prevents plumbing problems. This is an electrical problem and they just happen. Think of it as a short circuit.

If you can't do what you want to do, my advice is don't put it off. What can you expect the rest of your life? Feeling great! I'd be willing to bet your running improves once the pm gets your heart in sync. I've had one for 20 years now. I hike or ski every vacation, do Crossfit every morning, kayak and zipline every chance I get. There's nothing I want to do that I cannot. No one looks at me and sees a heart patient. It can be overwhelming at first. It's not like anyone wants one of these things, but most of us heal and move on, realize it's not a big deal and we're fortunate to have a problem with a fix.

Be Realistic

by 1965rich - 2014-10-30 05:10:51

Have to agree with most of the positive comments however you also need to be realistic. Having a PM inserted is not an insignificant event and acceptance of that is part of the journey. If your experience is anything like mine, you will experience good and not so good days, every answer you get will lead to many more questions. Read up on your condition and find out as much as you can.

I had intermittent stage 3 Heart Block, very healthy apart from that, running every other day. I'm 49 years of age and consider myself young as well. Had my PM implanted in June. Operation was fine, stayed in one night, back home the next day. Recovery has been fine, back to running on regular basis. You will get a lot of comments on here about forgetting that they even have the PM, I wouldn't say I'm at that point or every will be. Bottom line is that these small electrical devices are incredible and keep us safe so what ever we think we are lucky there is a solution

One thing to consider discussing with your Cardiologist is Placement of your PM, I opted for a sub pectorial implant and really pleased I did. The implant is hardly noticeable and far more protected. Helps if you are vain like me.

Happy for you to private message me if you need anymore detail. Hope it goes well for you.

thank you so much!

by Runningmama - 2014-10-30 08:10:23

thank you all so much! I do feel better now and will update as to what the EP says tomorrow...! I am sure i can to the right place! Thanks 10 million beats!!

Results are In !

by Runningmama - 2014-10-31 04:10:11

all three cardiologists (2 EPs and my normal cardio) agreed today, so I get my very first pacemaker...I do feel alot better after all the comments I got regarding my surgery, life, etc. Wanted to ask, does anyone else have experience with the Micra Transcather by Medtronic? That's what my EP thinks he can use on me, but since it's still in research stages, I was curious if anyone else here had any knowledge? I'm a little worried about carrying "space junk" that will live in my heart forever after the battery dies or maybe that's not a big deal?

Results are In !

by Runningmama - 2014-10-31 04:10:50

Just had mine installed yesterday

by Xxmikexx - 2014-11-01 01:11:30

Hello, 45 yo man here. Good shape. Active. Large family. 3rd degree heart block for up to 15 seconds multiple times a day. I been telling myself for 6 years I just "worked out too hard...or I just need more water."...or some such reasoning. Im pretty lucky i guess. Anyway, to put things from my perspective, I'm typing this the morning after my surgery, ate a big breakfast and just chillin with nothing more than tylonol at the moment. I even slept 6 hours last night but I admit it was rough. Well, Pace maker caught the heart block this morning and I didn't even feel faint or dizzy...didn't even know it happened. Yyyeeaaah! I am in the hospital until tonight and I asked the nurse to tell me when it happens so I can see the pm working. Boy how neat. I had the medtronic FDA approved device put in even though other devices are being MRI,d in Europe...like the St Jude. Anyway, do some research' just don't wait too long. I waited a month between er, holster for three weeks an another few days to pick my device out which was a luxury not everyone gets. Use these forums to vent...I did and boy there are some great ppl here. I wish u well.

Micra or Not >?

by Runningmama - 2014-11-01 04:11:03

Thanks, Guys! Yes, Donr you are right. And I felt like maybe I was being steered towards the Micra because of my age (yes, it's more discreet) but considering I'm young for one of their "testers" I had to think that they chose me for the program because I am young, active, otherwise healthy, etc so they can probably "follow me" throughout the device's life, etc. You know what I mean...there are so many pro's and cons for both in between each, so I told my EP that it was his decision. He knows my lifestyle and my heart's needs...BUT I still may steer towards the traditional tested and true...If the Micra is still around when I need my first replacement, I may go that route. What they didn't stress but I figured out (and asked) was that when the Micra needs replaced you have to have another Micra implanted beside the one that is no longer operable (it just stays in your heart) no way to remove it except open heart surgery. or you get a normal pacemaker anyway. So, at best, the Micra gives them some research from a young person and I don't have a scar for @ 10 years.I'm not sure the trade off is worth it....I'll let you know what we decide :)

XXmikexx: were you offered the Micra and just opt for the normal Medtronic? and if so, do you mind my asking what some of your reasons or concerns were?

Thanks!!

How Much do you know about...

by donr - 2014-11-01 07:11:31

...this Micra device? Have you Googled it to learn what is public domain knowledge?

How much detail have they given you about it?

I Googled it & learned that it was just approved last Dec & Medtronic was running a 780 patient TRIAL world wide. Are you part of this TRIAL? Do you want to be?

Face it - new devices always need trial patients. I signed up for a trial once - for a new design implantable lens in a cataract procedure. Surgeon Spent a lot of time explaining the lens to me, etc. It is NOT something to be entered into lightly.

You need to be going into this thing w/ your eyes wide open - like I did (Pun intended!)

Donr

Welcome!

by kmom - 2014-11-02 06:11:55

I didn't have block but had SSS and tachy rhythms--it was about a year after I was first dxed with problems, after an ablation and going on Propafenone for rhythm control I was having issues but we couldn't tell what the problem was until I had a month long monitor then I saw my cardio a month later on a Friday and on Monday they put in my PM! amazingly fast but it's helped a great deal--again a totally different situation from what you have but the good news is that they are both fixed with a PM. Ask away any questions and keep coming back

I went with Advisa

by Xxmikexx - 2014-11-02 12:11:18

Hello back. I'm home now enjoying pancakes with the family now.... so I went with medtronic "advisa". When i looked it up and charted all the thimgs it does in comparison with other makes and models i quckly learned there isnt too much difference...this one is mri safe and since I'm so young and active I wanted the luxury of an MRI in the future. Besides, I'm really learning a major point may not be so much the device but the leads used...devices will come and go but the leads will probably be there for life. So I went advisable with MRI wires/leads. It was a lot like shopping for a car, but tailored to you. I don't need pacing 27/7, only when really relaxed and sleeping for type three heart block. Others get paced no kidding 100% and would die with the pm pacing...so there is so much wiggle room for interpretation here its almost mind blowing. So...I focused on what the doc said I needed and shopped accordingly. Hope this helps. Message anytime...boy that anxiety was the worst part for me and chatting on the forums helped a lot! Well wishes!

Dual vs single lead

by Xxmikexx - 2014-11-02 12:11:39

Oh forgot to mention...I asked about the mica but it is only for sigle chamber pacers at the moment. Doc wasn't sure when a dual chamber option became available. Well see what the future holds...one thing is certain...I'm glad I will have a scar. It means I'll be able to tell the story...perspective is important, right? Take care.

single chamber pacing

by Tracey_E - 2014-11-03 09:11:10

Theoretically someone with heart block only needs ventricular pacing. Once upon a time, they only gave single leads. One of our members, Gellia, had one of the very first two leads. Now, most everyone gets two lead and there are solid reasons for it. We only expect to use the ventricular lead, but many of us do end up pacing at least some atrial. I pace 4% with the second lead. Even if we don't use it, the atrial lead provides information.

I honestly don't know if I'd say leave it up to the dr in this case. What are the dr's motives for basically making you part of a trial?? I'd probably stick with the tried and true. Imo, the scar is not a reason to make a decision one way or the other. They can place the scar on the chest so that you can barely see it, put it lower so it's less visible and bury the pm deeper so there is no lump. Some people end up with better placements than others so tell your dr it's a priority.

The leadless technology is very exciting and I can't wait to see where it goes, but imo this is too important to let them test on you when they don't have to. Now, if you had a reason why the leads would be an issue- like, a vein problem - or a skin problem where erosion would be a problem, then maybe go for it. Otherwise, think carefully if you want to take the risk.

wait time

by 1radoncman - 2014-11-05 07:11:29

I had my PM done about 6 1/2 weeks ago, it was done about 2 weeks after I saw my EP.
Hope it a good answer

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