Still somewhat in Daze

Hello I am the recent recipient of a Pacer, and am still I guess in shock that I have one. I am 38 and am pretty active and this all happened in my eyes pretty quickly. I have Hemochromatosis and have been strictly following the phlebotomies when we saw on my blood tests that the heart marker was high so I went to a cardiologist who put me through the passes and quickly had me do a nuclear test and 24 hour heart monitor which triggered me to go see a Electrophysiologist who scheduled an EP study. Prior to this I was still running about 3 miles every other day, but would get to about mile or mile and half and have to stop because of the spins, if I waited for them to go away I could start up running again. I didn’t think much of it other then it was probably from the blood letting.

The Doctor did the EP and saw a 2.8 pause but saw the heart was strong and said it wasn’t time for a Pacer yet, he wanted me to wear the event monitor. The following week I received the device and wore it less then 24 hours when I called the number to transmit and was quickly called by my doctor to get to the ER. It turns out that the 2.8 was now up to between 3.5 and 5. I didn’t pass out but would get the spins pretty bad and muscle spasms and weird feel in my chest. They had me do a Cardiac MRI and determined I only needed a pacer. I guess it is because I didn’t have time to really digest the possibility of having to have a pacemaker or the fact I was told a few days before I should be fine and we will just monitor it but I’m still kind of in Daze about it.

I feel like after reading these posts that I didn’t ask enough after the surgery like what my Pacer is set at. I have my first appointment in two weeks and was hoping some folks might be able to tell me what I should be asking. I am sorry this was so long, my wife has been awesome and she too had heart issues when she was 13 and had open heart surgery, but I don’t want to worry her so I don’t really talk about it. I live in a great community but am the only one my age that has a PM, most of my friends know I have one and have been great but don’t really understand why I have one at my age. I guess I am still little overwhelmed.

6 Comments

Hang in there

by tammy11 - 2011-11-05 03:11:11

I got my pacemaker Oct 3rd and I'm 41. I wasn't sure what questions to ask at my first pacer check, but I got on this website and read through many, many post and found all kinds of question to ask. My pacemaker tech ran very behind schedule at my first pacer check because of all my questions. I am active as well with 2 small children. I have been back to the doctors 4 times for adjustments. You need to ask what your pacemaker is set at (low and high) levels and if your rate response is on and what it is set at. My doctor originally had me set at what he calls "factory settings" and they did not agree with my active life style, but after a few adjustments I'm slowly getting back to exercising. I was able to walk a mile last night with out any issues. I'm so thankful for my pacemaker and very grateful for this website. I found postings on here that described what I was feeling and solutions to fix it. I actually walk into the doctors telling them what I want changed and it works thanks to the great people on here. I hope things get better for you very soon!!!

New Pacemaker

by SMITTY - 2011-11-05 08:11:07

Hello,

Yes having to have a pacemaker at 38 years of age is a real bummer as one of my grand kids would say. However getting a PM does not have to be all that bad. It depends on how you accept it. The main thing is do not let that PM take over your life, which is very easy to do. Just remember that PM is just a helper for your heart.

Based on what you say, I'm guessing your heart rate sometimes drops to a level to low to keep your supplied with an adequate supply of blood. To keep it from dropping to low your Dr has implanted a pacemaker. Now when your heart rate drops below the low set point on your PM it comes on and keeps your heart rate stay at least that fast. Or if your heart's natural pacemaker is skipping beats for too long a period the PM will detect this and supply the necessary electrical impulses to "fill the blank spots."

You don't say what the set points (low and high) are on your PM are so I am going to chose 60 for a low set point for my discussion. With a 60 for a low set point, that means you heart should bat once a second. That PM constantly monitors your heart rate and if a 60 second period goes by and the heat hearts natural PM does not send an impulse the man mad device fills in. The PM will monitor your heart rate 24/7 so long as the battery lasts, which will probably be somewhere between 7 and 10 or 12 years. My first one lasted 9 years.

So, what you have is an on demand PM. Like I said it does nothing but monitor your heart function until the heart rate drops below the low set point and at that time it steps in. But if you are like many of us, you got that PM and went home thinking that thing is necessary to keep your heart beating. But as most of us learn that is not true. In fact if that PM had quit an hour ago, your heart would be doing exactly the same ting it was doing before you got the PM. That is the reason I consider mine to be strictly a helper for my heart. In fact I had mine turned off for a little over 2 years due to some problems I had with it and could not get solved, and I never noticed it was not helping. A little earlier I mentioned a high and low set point. I told you about how the low set point fits into the picture. The high set point is the heart rate at which the PM will no longer send impulses to help lout. However, it does continue to monitor your heart rate waiting for the need for it to step in and help out again.

To wrap this up, that PM is not keeping you alive, but it is stopping the episodes of being dizzy. The only thing you need to avoid in the way of physical activity is that activity which could cause you to get a blow directly on the PM. The blow will not hurt the PM, but it will hurt you and it can possibly damage the leads that run from it to the heart.

So my suggestion is when the soreness from the PM implanting is gone (a few days to a few weeks) go about your business and forget that PM. It needs no attention and will sit there continuously doing what it is programmed to do.

Good luck to you,

Smitty

enjoy what you got

by manaman - 2011-11-05 11:11:25

Had my FIRST pacer over 15 years ago (now 68). Mine came from no where also, one day fine next day not. Took four (4) years almost to date before I got it done. Also very active (first doctor refused because he said my pulse was low because I was so active). Mine was so bad I would have to pull over and stop while driving (wait for faintness to go away). At time I was working around a lot of HEAVY electrical furnaces etc (they would actually make packer STOP and search for next impulse) almost got fired because I was in maintenance department. After I got regulated (60 bpm on the low side and 90 on the high end) my life changed completely!
Just had the first one replaced four (4) years ago (battery died in the first one).
If yours works as well as mine, then your life will be a lot greater with more energy,stamina, etc.
I fly a lot an always ASK for PAT DOWN. Sometimes electronic stuff WILL affect function but it will correct itself in only a few minutes.
Good Luck,
Cecil Pearson
North Carolina

Cheer up

by ElectricFrank - 2011-11-06 01:11:42

Now you can get back to running 3 miles again. All you have is a bad connection in your heart and now have a pacemaker wiring around it.

Age and physical condition have very little if any effect on needing a pacer. There have always been young fit athletes who have suddenly dropped dead of cardiac arrest, and I suspect that pacing problems were to blame.

I'm 81 have had a pacer since 2004 and am very active. It didn't make me 30 again, but we haven't worked that one out yet.

One thing to keep in mind is that the pacemaker needs to be properly adjusted to match your needs. This is especially an issue with those of us who are in good shape for our age. Many cardiologists are used to dealing with folks in poor shape and don't know what to do with someone like me who doesn't want the pacer limiting my heart rate to 120bpm.

Be sure and check in here if you have any questions.

frank

Thank You!

by onebigirish - 2011-11-06 05:11:55

I cant thank you all enough; I think Smitty hit it on the head thinking that this is keeping my heart running when in actuality if it stopped I would be where I was a few weeks ago. You all have definitely made me feel better and Cecil and Frank’s point that it needs to be adjusted for my needs is important. I have been reading a lot of the posts as Tammy11 pointed out and I can’t believe they don’t tell us a place like this exists when we check out of the hospital. You guys definitely make me feel like I will begetting my life back and be able to run and do normal things with my 3 year old son and wife. I cant thank you all enough!

Jim

Good comments

by Peterdotcm - 2011-11-07 02:11:58

I sure do like this site!

Peter

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Friends call you the bionic man.

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Your anxiety is normal. It takes some of us a little time to adjust to the new friend. As much as they love you, family and friends without a device just cannot understand the adjustment we go through. That is why this site is so valuable.