Pacemaker Programming for intermittent Full Heart Block and Running Races

[Konopka1955]

Dear Doctor, I was just diagnosed as being in intermittent full heart block today. History:  Previous MI, ICD for VT's and MVR for rheumative fever and inplanted with mechanical valve in May of this year. I've been running races since.. Not fast - but still doing alright.. last year I ran 35 races.

Today my EP programmed my pacer 'on' as I'm in intermittent heart block (again).  I could feel it kicking in and I had difficulty breathing - everytime my pacemaker came on. I don't care if it comes 'on' - I just want to walk and breath - I especially want to RUN and breath.. and the pacer gives me a shortness of breath when it comes on. I hate it..

Q1. Can I go without a pacemaker turned on? I was breathing better yesterday without the pacemaker program 'on'.  Would it be safe to ask my EP doc to shut off?

Q2. How do I go about finding out exactly what the "settings" are for the DDDR program with AV sequential pacing? and would I become pacer dependent if I had this program?  Could I run better?  

Q3. What other programs are available for runners with full heart block and - what exactly would the settings be?

Q4. I think I am on VVI program presently - my EP said I'm programmed at 'max' on my programming.. Pacer 50 bpm and 165 max - V1- 175 and VF- 220 bpm.  

Q5. Should I request a treadmill stress test to find the best program for my pacemaker?  

Q6.I went in full heart block after my OHS - but I came out of it -now I'm back in partially - he's thinking I'm not like to come out of it again at this point? Do you?  

Any suggestions?  

Thanks
Marily

[Marilyn (runner)]

Thanks for your post - that was such a sweet thing to say. :-)

Your so sweet.   :-)  

Marilyn (runner)  

[Marilyn (runner)]

Thank You so much for your return post.  :-)  I very much appreciate your time.  Over the years I have gained a wealth of information on this board.

I went to my EP tech this afternoon and after my interrogation - I looked at the print sheet and the first line had:  Mode:DDDR
I guess I've already been programmed to what I thought was the best program for runners.  I'm so embarassed..

But, after talking with the tech - I found out what the problem was:  My "sensor" was 'on' and that's why I got such shortness of breath.  Silly ME..  Just driving down the road and hitting a bump I would feel extra beats and couldn't breath.  Last night laying in bed - both my husband and I could 'hear' my mechanical valve - click, click, click.  heck I thought there were two clocks in the room and one alarm clock is enough in my house!!!   But my EP's tech said the sensor could do this along with feeling extra beats from bumps in the road.  So she shut the sensor off and let me walk fast up and down the hall and up and down the stairs and my breathing was 'great'.  

So, I guess all this 'complicated' information - ended up to be something silly like a 'sensor' 'on' and the worse part is - I'm always telling my EP doc - I want MAX - whatever it is - I want MAX - I want to RUN..  So, when he programmed me on Monday - he kept saying:  I gave you MAX.. I gave you MAX and of course I just smiled and I was just soooo happy.. :-)  

I guess I got what I asked for and then some..  I feel so stupid..  Yet, I was so worried.  I think this pacemaker is working great now.  I love it - I can walk, talk and breath all at the SAME TIME !!!  I don't feel any extra beats and shortness of breath..  The reason he programmed my pacemaker "on" was because I could only get my heart rate up to 140 bpm on my own.  So, he said he could program it to respond to my physcial needs up to 160 bpm when running.  So, of course - I said - Oh I want that.  I need that to run uphill !!!  Give me MORE...  Now I know why they say:  More is not necessarily BETTER..  

Last weekend I did a 5 miler in the remnants of Hurrican Ivan. It was the most memorable race I've ever done.  Had a great time - got a lobster roll and medal at the finish..  I'm so glad to hear you run..  Its lots of FUN and if I think I would lose it for even one DAY - I get upset..  My EP seems to know me well and whats more he knows what I need and he really gave me it 'all'..  :-)  Thank Goodness - I get the most out of my machine..  Now, if I could only get those 8:00 minute miles !!!! Unfortunately or maybe I should say 'fortunately' - I don't care how many replacements and parts they put in my heart - but you take away my running and man I get upset..  :-)

Thank You and
Best Wishes
Marilyn (runner)
Konopka1955

[CCF-M.D.-MJM]

Great questions.  As a fellow runner, I can see why you are concerned and understand the symptoms.

Background info first:  Many things can damage the hearts conduction system (age, MIs, surgeries, calcification from age or rheumatic heart disease, and many, many others).  Following surgery for valve replacements, it is common for people to have block for several days and it usually comes back.  There is inflammation around the conduction system following surgery and as the swelling goes away, the conduction system recovers function.  Unfortunately, if you are developing heart block and have not had a recent surgery or MI, the condition is likely to be more permanent bearing other causes for heart block.

Q1. Can I go without a pacemaker turned on? I was breathing better yesterday without the pacemaker program 'on'. Would it be safe to ask my EP doc to shut off?

It would not be safe to turn off your pacemaker if you have intermittent heart block.  Your permanent pacemaker (PPM)is only pacing you when it does not sense a ventricular beat, without the pacing you may faint or develop symptoms from low heart output.

Some people are more sensitive to ventricular pacing than others.  If you are in good physical condition, you are probably more able to discriminate between feeling good and great by your exercise tolerance. Pacing the atrium sometimes will help alleviate the symptoms.  If you have another indication for a biventricular pacemaker, it would probably help the symptoms.  Unfortunately, if you are able to run, you likely don't qualify for a biventricular pacemaker.

Q2. How do I go about finding out exactly what the "settings" are for the DDDR program with AV sequential pacing? and would I become pacer dependent if I had this program? Could I run better?

You will have to ask your doctor about the pacemaker settings.  It can be very complicated.  that is why pacemakers (EP or electrophysiology) is a subspecialty with in cardiology.  It requires one to two more years of training.

If you are pacer dependent when you are set to VVI, the same is true if you have DDDR programming-- you are still pacer dependent. It sounds like you are paced because the signal from your atrium is not reaching your ventricle with out the pacemaker.

If you don't have an atrial lead, an atrial lead may help coordinate the beats between you atrium in ventricle.  If you only have an ICD, than an upgrade to pacemaker with ICD capabilities would probably help.


Q3. What other programs are available for runners with full heart block and - what exactly would the settings be?

Described above.  If you don't have an atrial lead, adding an atrial lead and upgrading to a pacer-ICD may help your symptoms.

Q4. I think I am on VVI program presently - my EP said I'm programmed at 'max' on my programming. Pacer 50 bpm and 165 max - V1- 175 and VF- 220 bpm.

If you only have an ICD, this is reasonable.  Again, consider Pacer-ICD.

Q5. Should I request a treadmill stress test to find the best program for my pacemaker?

If your pacer is only VVI, there isn't much you can do that isn't already programmed.  If you have a pacer-ICD an echocardiogram can be done to determine the best delay between atrial and ventricular beats to allow optimal filling times for the ventricle.


Q6.I went in full heart block after my OHS - but I came out of it -now I'm back in partially - he's thinking I'm not like to come out of it again at this point? Do you?

I mentioned this in my intro paragraph.  I agree with your EP.  If started this long after surgery, it is likely to persist.

Good luck with the programming.  I hope it helps your symptoms.