Need advice

Hi! I have had my pacemaker for 4 weeks now. I am 61, very active and my only symptom was a thud in my chest when biking up steep hills. The EP study showed 2nd degree heart block. During the EP study, they paced my atrium to "physiological rates" ( which I assume are around 200 bpm) and decided I had Mobitz II and put in a pacemaker while I was drugged from the study. It seems to me that it could have waited as I could never get my heart rate as high as when they paced it, and I would have been willing to give up the steep hills rather than be stuck with a pacemaker the rest of my life. I was very sore for about 2 weeks and dread the thought of having a new one every 7 years. I feel anxious and depressed as I really don't understand why I have one so suddenly. Does any one know how many patients with 2nd degree HB actually advance to 3rd degree and how long this can take on the average?

Thanks! Willie G

7 Comments

Mobitz 2

by golden_snitch - 2014-07-19 02:07:54

Hi Willie!

May I ask why you had the EP study? I mean, to diagnose a block when biking, you really only need a holter monitor or get a bicycle ergometry done. Sounds like your doctor is all for the invasive stuff. If he put in a pacemaker directly after the EP study, while you were still drugged, you had given your consent prior to the whole procedure, hadn't you? Did you discuss different scenarios with your doctor before the procedure, and how to manage them. Had you told him that you were willing to give up the steep hills and that you wanted to wait with a pacemaker, if the indication wasn't clear?

Second degree heart block, Mobitz 2, is the type of block that can progress to a complete (third degree) heart block. Some doctors - and also patients - want to be on the safe side once it has been diagnosed, and therefore put a pacer in right away. Others just monitor it regularly, and then put the pacer in when the block worsens and/or symptoms worsen. So, yes, it could have probably waited, and also it's not the case that this type of block ALWAYS progresses to third degree heart block.

But it does not make sense to worry about this now as the pacer it's in, and it's there to stay. It sounds like that, at least at the moment, you will not need the pacer support very often, so maybe you can much more than 7 years out of the battery. I know patients who had theirs for 10-12 years. And by that time, the device will have become smaller, and surgery will be even less invasive. Also, once the pocket has been created, they usually put the pacer into the same pocket when it's time for replacement. That also helps with recovery.

I totally understand that you are frustrated and depressed now. Sounds like you were kind of overrun with the pacer implanted or talked into getting it. And you had no time to think about it, discuss it, probably get a second opinion. That really sucks, and it's ok to feel the way you do now. The thing is, the pacer is in now, and you need to get on with your life. Maybe it helps to speak to the doctor again, and tell him that the way he treated you was not ok. Sometimes it helps to say this out loud. Let him know how you feel - and even if it's just for getting this doctor to think about his actions.

Best wishes

Inga

Need advice

by WillieG - 2014-07-19 10:07:51

Thanks Inga for your nice response. I did have an event monitor and exercised like crazy and recorded 60 events in 8 days. They said they could not determine Mobitz I from Mobitz II as there was 2:1 conduction and they could not see the lengthening p wave. I did sign a consent form but with such few episodes when I would experience this, I never dreamed I would end up with a pace maker. I just wrote a letter to the EP cardiologist with these questions but have not gotten a reply yet. Mt other concern was during the Holter monitor, if I created 60 events in 8 days it seems as if I could have gone 2 to 3 years with that same amount. I wondered if this could have caused my Mobitz II to advance. I could feel my heart beating during these events but it only lasted about 90 seconds and I was back to normal. I felt totally great before the PM and was quite surprised at the pain after implantation. I felt like I had a hard boiled egg in my chest for the first week. The pains have subsided now and just one more week until I can resume activities. I have returned to the pacemaker clinic twice already as I experienced the same symptoms as before when biking. Bought a Polar FT7 heart monitor and during these events watched my HR drop from 164 to 51 and another time to 81. After last weeks adjustment, it stays up. I guess I am happy to bike without these funny sensations, but if they are only temporary it seems as if I could have waited a few years to have this annoying pacemaker.

I did read about this tiny pacemaker which is about the size if a triple A battery that is inserted via femoral artery and goes into the heart without surgery. This was done in England with 2 patients in June so maybe will make it here in the next few years. It did not say what type of heart problem it was used for so not much info there. It would be very nice to avoid a repeat of this uncomfortable surgery.

Thanks! Willie G

Mobitz type II 2nd degree heart block

by bluebowtye - 2014-07-19 12:07:52

Hi Willie G,

I was diagnosed just over 5 months ago. My only symptoms were 2 syncope episodes one night, the first I was just sitting on my couch doing nothing. All my heart tests came back fine. I had no problems exercising and passed the stress echo with flying colors. My Dr. never suspected I had anything wrong with my heart until he got my Holter results back. I wore it for 24 hours and it showed several episodes of my heart stopping, mostly at night but one was during the day and that's when I got the Mobitz diagnosis. My Dr. told me that it could rapidly progress to 3rd degree and because I had already had fainting episodes I had to have a pacemaker asap. He would not let me drive until I did so because I could have fainted at any moment as no one knows when the block will occur and when it will progress. After my implant I went from pacing 14% of the time to 29% 3 months later so the block has already gotten worse.

The first few weeks were pretty rough, but I am doing a lot better now and hopefully that will be the case for you. It takes a long time for our bodies and minds to get used to something like this. As far as the replacement surgery, it is not near as bad or invasive as the initial implant because they only have to replace the battery, or generator as it is sometimes called. As long as the leads are functioning properly they can leave those in. Unless there are complications you can go home the same day and don't have all the restrictions about raising your arm because the leads are already scarred into place so healing time is much quicker. Like Inga said, they use the same pocket and go through the same incision so that is not as bad either. I too am not really looking forward to that time, but will deal with it when the time comes. I figure why worry about something so far in the future, when I need to just get out and enjoy my life and make the most of each day now.

I really don't like the fact that I had to have the pacer but I understand it will allow me to live a mostly normal life without the fear of fainting. I wish you the best of luck. You have come to the right place. This group has helped me more than anything get through this. It is very comforting to me to know others are dealing with the same issues I am. Hang in there, it doesn't seem like it now, but it really does get better. I didn't believe it at first either, but I can honestly say it does.

Take care,
~Sheila

I can relate too

by deeheart - 2014-07-21 07:07:36

I identify with all of the above comments and have had similar thoughts , feelings and experiences. I was also diagnosed with Mobitz II which was first seen on a holter monitor--no other echoes, stress tests etc. showed this. I had several events mostly while sleeping but the docs said no PM yet and they would watch and see how things progressed. Since my Sx were continuing to get worse, I had another holter monitor put on two weeks later which showed many more events had occurred in a short amount of time that then required the PM procedure. I was scheduled to have it put in about one month from the last monitor results, but ended up having to go in much sooner because I was really feeling poorly--near passing out, tired shortness of breath, palpitations and noticing my heart "stopping" for a few seconds--surreal! While this was all happening my doc (who is a major cardiologist at a leading teaching hospital in California) stated that Mobitz II Sx are highly unpredictable and can rapidly change. So, as much as I feared getting the PM and am still adjusting physically and psychologically, the alternative was much worse. It's comforting to know many of you are going through similar circumstances and experiences. Thank you for sharing!!!

Good wishes to all!

Mobitz II

by WillieG - 2014-07-21 11:07:25

Thanks Sheila for your reassuring words. Sounds like your heart block came on rather suddenly, too, although in a much different way than mine. I felt totally fine except those episodes lasting 90 seconds while pedaling up steep hills. It has been 5 weeks today since my PM was implanted and the arm and muscles pains have subsided. I still feel it rub my bra strap when I move my L arm but it is not uncomfortable. I wish they would have warned me of the discomforts prior to the surgery. The hospital brochure said some people experienced a little discomfort for a couple of days which was an understatement. This web site has been very helpful to learn that others have struggled in the same way I have. Mentally, I still have a way to go. All of my friends say that I am the last person in the world that they could imagine having a pacemaker as I am so active, etc. I feel the same way and still wonder if this could have waited a few years until I had symptoms more often. I wish I had more information on the time it takes for this type of block to advance but from all my reading, it seems as if anyone has Mobitz II they immediately get a pacemaker. I am still searching for answers and when I finally get them, I should be more accepting.

Good luck to you as well and I will try not to think of replacement at this time.

Thanks! Willie G

I can relate

by bluebowtye - 2014-07-21 12:07:11

Hi Willie G,

I know exactly how you feel. We do have a lot in common as I got all the same comments you did after I found out I had to have the pacer and I felt that way too. I was in total shock as were all the people I told. I still get that reaction. From what my doc said it really doesn't matter how active or in shape we are as no one knows what causes heart block and there is nothing to do to prevent it. Those things are great for the "plumbing" part of your heart but do nothing for the "electrical" part. I also did a lot of research on how fast Mobitz II can progress to Mobitz III and EVERYTHING I found said they do not know. In some people it only takes a few weeks while others never progress that far. All recommendations after diagnosis were to get a PM asap.

The problem with waiting a few years is you just cannot predict when the block will occur or how long it will last or when your symptoms might get worse. You would be far worse off if it happened while you were driving and you fainted and wrecked your car and possibly hurt or killed not only yourself but some innocent people on the road. I will take the pacer any day over that. I could never have lived with myself if something like that happened when I could have totally prevented it by getting the PM.

As far as the discomforts post surgery I totally agree with you. The problem is, the people who write those brochures and even the doctors themselves do not have a device implanted inside them so they really do not know what it's like. Some people have no issues and recover very quickly while others take more time. I fell into that category. I still sometimes have discomfort when my bra strap or other things rub against my scar. Sometimes when I move my arm certain ways I can feel the pacer there. It is just something we have to get used too and I do think it will get better as time goes on.

No doubt about it, it is a huge adjustment mentally. I still deal with it a little, but not near as much as I used too. I think it's a little easier for me because my doc would not let me drive after my diagnosis. It is a law in my state (IA) that you cannot drive for 6 months following a seizure or a fainting spell unless they figure out the problem and correct it, like getting a pacemaker. I live 45 minutes away from my job and could not go that long without driving and there is no way to predict if I might have fainted again during that time and if I did I would have had to wait another 6 months. I just could not do that as I have too much to live for now.

As time goes on, you will come to accept it easier. As soon as you feel up to it, get back to your normal routine and do the things you enjoy. Do not let the fact that you have the pacer hold you back. Visit this site often as that has what helped me more than anything.

Take care! You are not alone in this and you can get through it. Good luck!
~Sheila

I can relate too

by WillieG - 2014-07-22 03:07:51

Thanks for your comments and sharing your experiences. Looks as if I was the only one who hadn't felt faint and other problems where a PM would improve symptoms. I do notice improvement biking on hills so that is good! I resumed all of my exercise activities a couple weeks early. Been back to racquetball for 2 weeks and pushed a lawnmower on a level area, and even swam some laps using partial breast stroke so I wouldn't have my left arm over my head. I was hiking and biking the week after the surgery so no down time there. I go back to the pacemaker clinic next week for the 6 week check up and I think they turn the voltage down to save the battery. Since they seem to have the settings fixed so that my HR can climb on bike rides, it seems high with just walking around the house I am around 100. Only drops if I sit. Wonder if that is normal?

I, too, will adjust with time. It is helpful to read advice from others and not feel like you are the only one with this problem.

Cheers to speedy healing! WG

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