Still Short of breath

Hello Everyone
We are having a giant snow day here in the northeast with a foot on the ground already, on top of the 1-2 feet we already had. More snow on the away tonight.

So, here I am, now 6 months post complete heart block with no defining cause. My heart is otherwise healthy and normal. Since my pacemaker was implanted on July 29 2013 I have experienced severe episodes of shortness of breath, some on exertion and others while just talking. By the way, my PM is pacing my lower chambers at 100% and so without it I am a dead man. Several PM interrogations later they tell me my PM is working fine. Of course I say, I am sitting here in a chair doing nothing. Then of course the answer is the PM records any event that may happen. Okay I say but why I am I still short of breath. Well the easy answer is that it is in my head or I have not exercised enough. Early on, Max, a great tech from Medtronics increased the top end of my heart rate to 160 from 130. This actually did help some. But, and there is always a but, I am still short of breath. So, my Cardio (I think just to appease me) orders a stress test. I agree and went for my appt yesterday. Of course when I got there they hook up the electrodes and waited for the Cardio to show. Finally he shows and guess what he says "I can't do the stress test because you are pacing 100% of the time". Well I nearly blew a gasket!!! Finally I said lets do it and see what I can do and what you can see. He agreed and low and behold by the time ,y pulse got up to 130 the pacemaker was blocking beats. I thin they call it 2 to one. The exact time the PM began to block my heart rate from going any higher I became so short of breath I was gasping for air. I begged them to let me sit down or I was going to fall down. So, the cardio was able to see the PM was my worst enemy and that it was obvious that "tweeks" were needed but that he just didn't know what they were. He said he would consult with Medtronics and call me within 2-3 days. Guys when I tell you I am frustrated I mean I almost wish they would turn this thing off. I am tired of fighting an establishment that is "to big to fail". I can't live like this I am only 59. If this not fixed I can't play a round of golf or chase my granddtr around. There is something wrong with the PM but they would still rather it be me. Lets see what they say but just to get to this point has taken every ounce of strength I have, I am spent!! I hope this lesson that the PM may indeed be the problem serves as lesson for others that the machine must be set right for each individual. There is no universal formula. and the damn docs better start listening to their patients. Not everyone needs drugs to relax them but being short of breath and gasping for air is enough to drive a person nuts. I would love to hear what you all think about this.
HK

5 Comments

Symtoms

by jude - 2014-02-13 07:02:28

I am a new member on this website & the first comment I read is yours. I had a pm put in Jan 2012. I went home & had the same gasping for breath that you are describing. God, it is very frustrating to not be able to do anything without gasping for breath!! After several trips to the hospital I was told that I had PACEMAKER SYNDROME. I was sent to Nashville Tn. ( I live in Knoxville) to Centennial Hospital where a dr. told me that I needed surgery again to have a CRT with a diffibulator put in. I came back to Knoxville & had that surgery. When I came out of surgery I was told that one of the wires was on the Vegas nerve which hits the diapharm & causes the " hiccups". When I move around my diapharm punches me in the gut. Anyway, two weeks after that surgery my breathlessness went away & left me with almost constant punch to the gut. That surgery was performed in 2012. In Dec. on Christmas eve, the heavy breathlessness returned. My Dr. left town--for good! I now have my next apt. going back to Nashville-- is March 10. I know this is not a very encouraging comment but I know how frustrated you are & I hope this gives you some hope for more research & getting to the bottom of this problem. jude

I feel your pain..

by statuesque - 2014-02-13 08:02:46

You're sitting in a chair doing nothing and I am sleeping all the time since I got my PM implanted on Dec.13th. Before my implant I was walking 10,000 steps a day and walking up 10 flights of stairs, and have done as much as 50 without being short of breath and now I can't even manage 2 flights without gasping for air. My Doctor said the pacemaker was functioning perfectly, what about me? My life has totally changed and now. I still have most of the symptoms for SSS with the pacemaker implanted. I am 64 but a very active person.Of course when I told him how much I walked he just looked at me, but when I showed him my printouts from the FitBit activity monitor website of my weekly steps you can see a drastic change I went from 63,000 steps a week before the surgery to 4,000 steps a week after the surgery.He begrudgingly agreed the surgery may have triggered something else......and he claims he has never heard of anyone having this kind of problem but here you are with a similar problem...I have had 2 tweaks and nothing has changed for the better.....but the device is working and I am just sleeping my life away so he thinks I should be happy....

I know how it feels to be short of breath I used to be on oxygen and so every time I gasp for breath it is scary. My cardiologist said just have it removed! After convincing me I needed it! My Electrophysiologist who implanted it said it would be malpractice to remove it and was surprised my cardiologist suggested it.I am so fed up with dueling opinions.....So I learned something new Pacemaker Syndrome.....why am I learning about this from the internet and not my doctors? Thank goodness for the internet........I have a Medtronic device also. the MRI safe device...If someone had told me previous to the implantation that my whole way of living was at risk I think I would have thought it over longer. Now the doctors think they have done a great deed by saving my life while taking away my life as I knew it....All I do is sleep and drink tons of coffee to try and stay awake. I feel like a pacemaker zombie now.
Between being tired and short of breath I feel screwed over big time......Keep me posted on what you find out....

De ja vu

by KAG - 2014-02-14 11:02:44

If you do searches on this site (upper right corner) for newbies, adjustments, etc.... you'll see many many posts which are very similar to yours.

I'm also 59, my 100% AV block came on very suddenly. Within a few weeks I went from OK to my implant. No known cause, which is fairly typical for electrical problems. After a few weeks I was out walking up a hill and got extremely SOB and felt like I was walking in deep sand. Fortunately at this time I found this site and got some great advice and comments:

1) Your PM is extremely reliable. It does exactly what it's programmed to do all the time (24/7).
2) Each PM must be tweaked to support your lifestyle. They start you out with average settings which are OK for most people. However if you're more active then you will probably need tweaks.
3) Get a copy of your PM interrogation report. It has all your PM settings and modes listed. You can ask questions on this site to understand it, if needed. You need to understand how you feel and if you feel "funny" when doing an activity then keep a log and note what you're doing and when. The PM techs can look at your PM data and see if anything is going on at those times.
4) If you have simple AV Block the main settings are your mode (Mine is DDD, Rate Response Off) and Upper Track Rate. If UTR is set to low the PM will do what it's programmed to do. If your HR gets to the UTR the PM will do a 2 to 1 block to slow your HR down. For me raising my UTR fixed my SOB problem. It did take a while to build up my stamina, so some SOB was conditioning.
5) If you have problems with your sinus node then you'll need RR turned On and there are numerous settings which need fine tuning to support your activities.
6) Only you know how you feel and you must communicate this with your cardio folks. For me taking my activity log in and sitting down with the PM techs (also had a list of questions written down) and working with them to come up with a plan to address my issues. Hopefully you have good techs and Drs who will work with you. I think going in with written down data (activity log) helps versus going in with a general "I don't feel good". That way they have something definitive to work with. Since I've been feeling great I no longer keep the log, but I will if I start feeling bad again.
7) You must keep after it until you optimize your device. You may or may not get back to being a tri-athlete or elite marathoner (many on this site do these activities), but only you are your best advocate.

You've found a great site for support and getting back to normal activities is the best medicine.
Kathy

Short of Breath Update

by HK - 2014-02-16 02:02:48

Hello All,
Thanks to those who took the time to respond to my original post "Still Short of breath Posted by HK on 2014-02-13 17:19". At this point it is clear each of us should be asking questions of those that provide our care. By that I mean even those with extreme education such as Cardiologists, technicians from Medtronics, etc. These people are not only responsible for keeping us alive but by extension allowing us to lead the highest possible level of quality of life. Ok, now that I have said this let me tell you why I feel this way.

Please read my original post for the details. I know for a fact I am pacing at 100%. That means 24/7 I am alive because my AV node, which works perfectly on its own is sending a signal to my ventricular node that is unable to act, at all, on the incoming signal. Thankfully, my PM is providing that signal and it lets me live.

That being said, I do not want to sound ungrateful for the technology and skills of those that keep me alive. I do however wish to and yes I even expect to be able to live my life (I am 59) how I see fit to do so. My heart is perfectly healthy for all levels of activity (all of tests know to man say so) and yet I cannot chase after my 3 year old granddtr, walk up a flight of steps, work a full day, have a conversation (I think you get the idea) without getting out of breath.

My Cardio ordered a stress test, it was scheduled, I was prepared and ready to go until the Cardio cam in and said he cannot do the test because my PM is pacing at 100% and he cannot read my EKG. He has been told at least 6 times by Medtronics reps that I am pacing at 100% of the time. I convinced him to do the stress test anyway and see what happens when I exert myself. He did so and guess what? Aside from the fact I began gasping for air and couldn't stand up anymore, he saw my pacemaker had starting to block my own heart rate at a level much lower that its current settings. So, by the time my heart rate reached 130 it started pacing at 2 for 1 ratio leaving me unable to function, out of breath and totally unaccepting of this as my existence.

Finally, someone actually saw something in my EKG that was wrong with my PM. He then set out to consult with several other Cardio's and EP docs in the area. I am being scheduled for an appointment with my original Electrophysiologist within the next 7-10 days to modify my PM settings. This will be done in the cath lab for safety. I am hopefully that after 6 months of being short of breath that I will be able to get some relief.

I know many of us here have had similar issues and I will be sure to keep you updated as often as I can.

Many thanks,
HK

Rate Response

by Grateful Heart - 2014-02-17 11:02:53

If you have SSS (me too) your Rate Response should usually be turned on to accommodate activity. If your Upper Limit is currently 160, there are settings within the Rate Response that can also be adjusted.

My Upper Limit was 130 and was raised to 150. I need mine raised again as well.

Your EP should be able to work with you on this. With the right settings and all else being well, you should feel much better.

Let us know how it goes.

Grateful Heart

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