New Pacemaker

Hi,
I got a new PM 2210 dual St Jude PM on Oct 7, 2010. I just turned 50, female, so I know I am young for a PM. I am active, have a 13 yr old daughter, single mom. Was feeling lightheaded and dizzy and passing out...got worse the last few weeks...tilt table upon admission ... passed out in 9 minutes with a drop in BP to 70 over nothing and a dropped heart rate... came around to Cardiologist making arrangements for a pacemaker insertion stat. I am a nurse and was at my own hospital when this happened so I trust all that were involved.
Having schooled people (usually in their 80’s or above and in full blown heart failure and also many with afib) I told them in the past how much better they would feel after surgery.
Not having heart failure or afib, just sick sinus and 2nd degree heart block with a heart rate that goes well below 40 with pauses and a blood pressure that goes down to 78/42 at night ... I find myself with a pacemaker. I do not feel well ... ended up back in the hospital last week with retrograde pacing (heart also races and throws pvc’s and pac’s and apparently my dual pacer was retrograde pacing). That has been fixed (or so I am told). Although I feel 75% better, I feel that with an artificial battery in me I should feel closer to 100% better. I have competing people telling me competing things, i.e., cardiologist thinks him and rep can handle it, EP guy thinks I am so young and complex I should be handled by an EP guy but has to call the rep in order to understand the pacemaker.
All I want is to accept what has happened, and move on healthier than when it began. I have a good attitude and am willing to do my part. How long will it take to feel better and who is best to handle this at my age?
I thank you all ahead of time for your opinions and or thoughts.

12 Comments

Passing Out and Exercise Stress Test

by cah - 2010-10-28 03:10:04

Thank you everyone for your comments! I don't feel so alone with all of you here :-)

I got interrogated today (not me but my PM :-) ... It seems per cardio and rep to be working fine. Told them I cannot tolerate activity without being lightheaded so having an exercise stress test tomorrow.

I will keep you all updated.

Thank you all again for being here!!!

Hi & Welcome

by Pookie - 2010-10-28 05:10:52

Gee, what a confusing mess with so many "professionals" involved, but I'm sure, given time, it will all work out, it just seems to me that there are too many cooks in YOUR kitchen if you know what I mean:)

I betcha that after your stress test tomorrow they will be able to pinpoint the issue, which I would bet is a setting adjustment.

Actually I giggle when they say pacemaker "interrogation", I always think it should be that we're going in for a tune up.

Very best of luck & keep us posted.

Pookie

great attitude

by Tracey_E - 2010-10-28 08:10:19

I think you have a wonderful attitude! How frustrating that they can't just agree. My answer would depend on your rep. Some reps are fabulous, some are mediocre at best. What you don't want is all of them with their fingers in the pot! You're right, you probably can be feeling better but it's perfectly normal to take some time to get someone young and active programmed just right, we are more challenging than the older, sedentary patients and sometimes it's trial and error to see what works. It took me probably 5 or 6 trips back after my first one to get it right, and the last time I got on the treadmill so they could watch what was going on.

My experience has been with a rep working through the cardiologist. My rep is amazing, he's the reason I do it this way, most stick with their ep. How do you feel about the rep? If the ep is calling the rep anyway, I'd probably just stick with the cardiologist instead of having two drs to follow up with. No one knows the device inside and out better than a good rep. A cardiologist probably should not be making the decisions, they're mostly plumbers and we need an electrician.

Ok, silly question... the ep is calling the rep and the cardio is using the rep- is it the same rep?? If they're consulting the same person, you shouldn't be getting conflicting information, maybe they're both just trying to keep you as a patient.

If it could happen ... it did ...

by cah - 2010-10-28 09:10:08

First visit and placement...My Cardio was out of town the day after it was placed. My primary MD was out of town when I got admitted so he had no idea that I got a PM and he does not visit the hospital for rounds anymore. The covering Cardiologist only cared that I was awake and oriented and my vitals were stable (Iying in bed with no activity). Once I got home I thought I was being too hard on myself so took it easy for a couple of days to recover. I just got sicker.

Second hospital admission a week later... Cardioligist still out of town ... primary MD had covering Cardiologist who discharged me week before re-admit me. His goal again ... keep me stable. It was a Neurologist (who is also a Doc I work with and was on the case because of syncope ... lightheaded) who insisted on an EP. Covering Cardio was not happy that this was written in my notes two days in a row. I had to insist he read the notes. He did not want to step on toes I would imagine. He ordered EP.

It gets better. EP was late getting home to study for boards (true story). EP called Rep who had a day off. Rep gave EP another number to call. EP and second Rep on phone for over an hour. EP explained that my pacemaker was new and that although they all do the same thing and he knew what I needed to adjust it, the Rep is the one who knows how to adjust those settings.

Even now I think with one adjustment (and a second 5 day admission because my cardiologist was still out of the states) I may be too hard on myself. I am not one to lay around and be sick, I want to go back to work and just be a normal mom to my 13 yr old and my older children. I worry about being out too long and losing my job. However, activity still make me short of breath and lightheaded (although no passing out). I feel like I need to be proactive and have it adjusted until I feel better than 75% but being a nurse works against a person sometimes because a Rep can give us an attitude and in this case I told her to treat me like anyone else as I am just like anyone else new to having a PM and I know NOTHING except how I am feeling and I know I do not feel well.

I do know this, a person who has any kind of surgery to 'fix' an issue should not be stable only when lying still in bed or on a couch. I know I should be able to tolerate more than one hour of activity without exhaustion or more than 15 minutes without being lightheaded or short of breath.

I am sorry to droan on but I was always one to be proactive for others than myself and I need support to be proactive for myself for a change as it is strange territory for me and I have to admit ... reading what you all have written on this site helps.

Cardio asked that I give him a chance as he has just returned, I see him and Rep at 11am today.

yikes

by Creaky - 2010-10-28 10:10:49

Good luck.
The apparent lack of understanding of the pm's by cardiologists is scary. The cardiologist I saw after passing out still wasn't convinced I needed a pm even after the second blackout and EKG showing 3 conduction blocks. The EP took one look at my EKG and I had a pm by that evening.
Thanks to the ER docs that insisted they transport me to the EP's hospital even though the cardiologists were hesitant!

So I'm Not Krazee!

by cah - 2010-10-28 11:10:21

Thank you everyone for your comments because I am beginning to feel better about not doubting myself (although I do not normally doubt myself, this is not a "normal" situation).

I know medicine is not an "exact" science and I accept and explain that on a regular basis. However, this said, I think after reading a lot of the comments on this site it is best to keep on going until they get it "right" and that it is o.k. to want to feel "better" after implanting a device that is supposed to be helpful.

Discouraged that no one person is the expert but perhaps after t his experience and more import into forums like this one ... if these devices are going to be implanted to prolong and improve our quality of life then am I asking too much to want more than 75%... I think not ... sad that no "one" person is the expert (i.e., Rep, EP or Cardiologist) but am glad that many of you out there have worked it out ... if you can tell me who and or how you worked it out it would be very much appreciated.

I know no one answer is right for everyone but perhaps collectively something will work for me or for others.

I am glad to know I am not Krazee though!!!

the runaround

by Tracey_E - 2010-10-28 11:10:48

Jeez, the word clusterf*** comes to mind, lol. The substitute cardio sounds like he has an ER mentality, stabilize and turn the patient over to someone else for everything else. Good luck with your appt today. Hopefully they can take care of it now that you have your regular cardio back and the rep will be there. I'd give him a chance, then find a good ep if he can't fix it.

Something to keep in mind if they are stumped is a stress test. Get on the treadmill while hooked up to the pm computer and let them watch what happens when you exert. This has solved more than one problem for me over the years.

Also know that they will make changes in small increments so one adjustment may not be enough. Better to make one small change and see if it works than change three things, it doesn't work, and you're back at square one. It's perfectly normal to take a few tries to get it right.

It's normal to get tired easily after surgery, but getting lightheaded and dizzy is not normal and could easily be your settings. It also sounds like you might be overdoing it, you're not that far out from surgery. I have quite a few good friends who are nurses, none of them can stand to sit still for five minutes and they get impatient and make lousy patients :o)

Ignore anything your primary has to say about the pm! Pacemakers, esp ones in a young patient, were just a lecture for them in med school. I find I usually am the one explaining things to my primary because she knows next to nothing. Specialists are even more fun, they know less than nothing. It's really important for us to be educated about our condition and how our pm works so we can be our own advocate. I had an ob give me a medication I can't have. I had a podiatrist want to send me for a test I can't have. Each time they didn't even know to check.

Let us know how your appt goes!

EP

by Heidiglassmeyer - 2010-10-28 12:10:11

After my implant 2/10, I only see my EP now and Cardioligist once a year. Your EP is the expert with the electrical part of the heart. But really as others have mentioned the key is a great rep. My EP has three different Medtronics reps and although they are all good I found one who is the best working on younger patients. I had at least 5 setting changes and she would not stop trying until I felt 100%. That included a balance of PM settings and medication. So my recomendation (personal) is stay with your EP, find out if their is another rep if you are not happy with the current one. If you have non-electrical issues with your heart then obviously you would use your Cardio. When my EP had concerns early on he did partner with my Cardio, ran a few tests, then reported the results back to my EP. I know it's hard but be persistent until your settings/meds get you to 100%!

Heidi

Same Pacer

by pacerpaul - 2010-10-29 10:10:54

I have the same pacer as you and my experience has been really good. However, as the others said, a lot has to do with the rep and your EP doc. Before I left the hospital the St Jude rep came by and checked the settings. She explained what she was doing, told me about the remote monitoring and everything. I would definitely get it checked out and would say something to your EP doc & rep. As you know the pacers are rather complex and there is a lot of tweaking they can do. Tell them what you are experiencing, how you are feeling (tired ok from surgery but dizzy not so good) and you'd like it check. I like to tell my cardio doc that I've had this body for 53 years and I think by know I know it pretty good :)

Also remember, you and your new 'buddy' are still getting to know each other. My doc says it takes a month for the leads to set and your heart needs to heal. Good luck and keep us posted on your progress!

Paul

Pacer

by dad4dds - 2010-10-30 06:10:45

I also have a St. Judes (10-25-09). I changed my diet and such. It is now routine. Good luck hope it all works out. We are here for each other.

Brian

Thank You!

by cah - 2010-10-30 09:10:36

I am so grateful for all of your comments and encouragement!

Thank you !!!
C

EP Doc

by cah - 2010-10-30 12:10:34

Thank you Paul. I have decided after reading this site and speaking with others that I am going to pursue an EP Doc. The EP rep says there is only so much they can do without an EP Doc.

I am glad to know someone with the same Pacer as myself and it is working out.

I am not one to give into being ill. I worked passing out for a month off and on thinking it was my blood sugar (I am also a reactive hypoglycemic and no I do not have Addisons ... it has been ruled out :-).

I ate around the clock for a month thinking it was just getting worse until I almost passed out driving my daughter in the car and finally faced fact it was my heart.

I am so glad you are all here as I do not feel alone. Thank you all for your support !

P.S. ... I stopped stress test before I passed out (did not want to end up admitted again). A couple of minutes into it I started throwing PVC's all over the place ...

EP next Wednesday ... although I think my Cardiologist is brilliant and I love and respect his intelligence I was told today I still need an EP so all records already on the way to him. Will update and thank you again!!!

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