I am constantly out of breath!

On March 31st 2007 I collapsed and was taken to the hospital with a complete heart blockage. They had me in surgery within 30 minutes and installed a St Jude Pacemaker. Since release from hospital I have constant shortness of breath. Before th Pacemakere implant, I was able to excercise vigorously, and did 4 to 5 miles/day on a treadmill at a fast walking rate of 4.5MPH. Now I can hardly get the treadmill to 3MPH and can only stay on 15 to 20 min at best. I have been check out by a pumonlogist, who put me on Advair, but he could find no problem with my lungs after putting me through a battery of tests. The only thing I can think of is that is has something to do with the pacemaker since it strated as soon as I left the hospital. My cardiolgist says there are no problems with the PM Any ideas or thoughts from anyone. I ready to give up on doctors.

7 Comments

SOB #2

by janetinak - 2008-01-21 01:01:31

Good advice above. I'd like to add that I was increaslingly SOB over nothing so I mentioned it & was worked up (Echo & Stress Tested) & T.G. everything OK so I mentioned it to the tech & low & behold I was on the lowest setting (1 of 3) for respiratory effort/response. They had me sit with leads on & not talk & see what PM recommended (my version of events). PM agreed with tech's & increased to 2 (3 is highest) & SOB just about gone. I'm thinking of asking if I can go to 3 soon.

Good luck. Keep asking until its fixed.

Janet

SOB

by SMITTY - 2008-01-21 01:01:35

Hello Jack,

No, don't give up on doctors in general, but it may be a good idea to consider giving up on the one you have. And considering that you had no problem with SOB before you got a PM, I have to agree that your problem may be associated with the PM. Of course there are a lot of other things that could be causing the SOB too.

I've had a PM about 8 years and I had many, many problems with the thing. I heard "there are no problems with the PM" more than a hundred times. This was an experienced electrophysiologist with a pedigree about a yard long and the result was that he and his helpers had about convinced me that it was all in my head. I still had one small item to hold onto to keep from thinking it was me and not the PM and that was the fact that I did not have these problems until about 3 weeks after I got the PM.

Then I found this site and learned that other people were living with problems very much like mine and getting the same old run around from their doctors. That started me to doing a lot of research on pacemaker problems and why doctors try to brush off the patients with the comment "you problem is not caused by your pacemaker." It was doing this research that I learned enough to ask questions about various things regarding my PM and to recognize when I was getting answers that were designed to make me shut up. This went on for almost three years and finally I said turn the thing off. I knew I was not PM dependant so I could see no harm in having this done. My problem went away and when the PM had to be restarted because of congestive heart failure about 2.5 years later I had no problem getting someone to listen and work with me in getting a solution to my old problem.

I tell this just to try and emphasize that help is out there for PM problems. All you have to do is find it. While I'm on my soap box I'll go on and express an opinion on why some doctors are like what you are running into. They probably do not know enough about PM to change the settings on one. The surgery to implant a PM is relatively simple, so far as heart surgeries go. So a doctor can do a good implant and still not know anything about the operation of a PM.

A PM is a very sophisticated little electronic device. The doctors that insist on saying it is not the PM probably have trouble operating the TV remote. His technical ability is taxed when he has to do anything more than flip a light switch. If you are wondering how these doctors ever get a PM implanted and started, well the manufacturer will frequently provides their reps who do know all the details about a PM to assist these doctors. So the Dr. implants the device and the rep starts it and makes the initial settings. Then when people like you and me are so inconsiderate as to complain, the good Dr. is up a creek without his paddle. And believe me there are many of them that do not have a paddle.

While I have no idea why you are short of breath I think you have about two options. One is change doctors if possible. Second, if that is not possible, remember that the squeaky wheel gets the grease. Wart that doctor until he gets sick of hearing your name and provides you with the help you need. That help may come from a St. Jude rep.

As for your short of breath, that was one of my complaints when I got my PM. While the PM did noting for the SOB it did create a new problem. I did get the SOB problem solved about 3 months after I got the PM. I had a stent implanted. I had a coronary artery that was partially blocked and needed opening. Getting relief like that was not new to me because about 18 years earlier I was having a problem with extreme SOB and even had a heart attack. I had a quadruple bypass to solve that problem. That was surgery was truly a miracle to me.

I wish you the best,

Smitty

A few comments

by ElectricFrank - 2008-01-21 01:01:38

Collapsing and then being told you have "complete heart blockage" is a scary thing to have happen especially without warning. Shortness of breath is the way our bodies respond to a threat and then the feelings of difficulty breathing just aggravate the anxiety. It may help to put this whole thing into perspective. What you actually have is more correctly known as 3rd degree AV block which means there is an interruption in the nerve conduction that carries pacing impulses from your atrium to your ventricles. When this happens there is an intrinsic pacer in the ventricles that keeps them beating, but at a much slower rate. In your case when the block occurred that rate was too low to supply adequate blood to to your brain and you passed out. The pacemaker is now substituting for that AV bundle of nerves and all should be OK. The reason I mention this is that you may be experiencing anxiety/panic symptoms. So long as your lungs are OK which they seem to be try relaxing in a recliner and then taking long deep breaths at around 10 breaths per minute and see how it affects your feeling. It may take a while to get used to it, but it works.When my cardiologist asks me if I have shortness of breath I tell him "no I have longness of breath" . I had a similar experience 3 years ago when my HR suddenly dropped to 40 and then slowly went on down to 26 the night before getting the pacer. I did quite well actually even at that rate.

Now the other thing that might be a factor is the pacemaker settings. After the initial implant they usually set the upper and lower HR limits very conservatively. They set mine to 70-120. I was in good shape like you and I immediately started to exercise after getting the pacer. The problem is that I would drive the rate past 120 and the pacer would enforce the upper limit by skipping beats. I had to be very firm with the cardiologist that I wanted it set to 55-150BPM which helped a lot. The other problem is what is called Rate Response, which has the pacer determine your HR. You likely don't need it turned on and it conflicts with your own pacemaker and can increase the feeling anxiety.
Finally, I don't understand the docs giving you Advair when you have no lung problems or asthma. Some of the listed frequent side effects are fast or uneven heart beats, restless feeling which are not what you need.
If I can answer any questions either post them here or send me a private note.
good luck,
frank


"I am constantly out of breath"

by jack 185 - 2008-01-21 02:01:24

This message is for Jack R. Coincently my husband's was also "Jack R". His complaint was exactly what you are describing and the response from doctors was the same. Jack R. ... listen to these good people and hound your doctor for answers .... it is the pacemaker and the doctor's must deal with it immediately. Don't let them tell you they can't find any problem with it. I cannot forgive myself for not finding this site when I was faced with these problems with my husband. Please follow up.

Jack's wife

Listen to the above advice!

by Suze - 2008-01-21 06:01:49

Please, Jack R, listen to the advice everyone is giving you. I know that getting a new doctor -or at least getting a second opinion- is easier said than done...BUT, this is your health we're talking about. Nothing is more important than good health and peace of mind.

If I were you, I wouldnt believe anyone who says out of hand that your problems couldn't be your pacemaker. Maybe if you tell your doctor that you're getting a second opinion he will become more interested in your questions and concerns.

Anyway, I'm sorry you have to go through this.
Please keep us updated.

Suze

I second Smitty

by axg9504 - 2008-01-21 08:01:00

Good advice by Smitty, do some research and pay attention to how the doc comes to his conclusions. I've had one doc make a spur of the moment decision to put me on Coumadin, just as I was about to leave his office and I rejected his advice and am I glad I did because I didn't have paroxysmal afib as he suggested, but just needed a PM for a slowing sinus node!! I think if you focus on how the doc. goes about making his diagnosis and comes to conclusions you can get some insight on whether to trust his judgment. I don't know about asthma but I was tested by a pulmonologist too at one point to see if I had exercise induced asthma. But he didn't put me on Advair first!

wow

by jessie - 2008-01-21 12:01:09

i am on advair and i have copd but in a year and a half it has improved some i am also on spiriva. so with no lung problems and nothing wrong with your pacemaker then i would say something else is going on and go back again to the doctors. if nothing is wrong with the lungs why are you sob. i am no longer sob. i was lucky. i was given more time. so i hope you can soon resolve it. jessie oh yes if you are new jack welcome. someone else may be more helpful

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