Frustrated

I had my Medtronic dual chamber pm implanted October 2,2014 for sic sinus syndrome. Been athletic/active all my life. Prior to pm I had run 7 marathons with a BQ in 2013. 6 months prior to pm started having SOB when running. Went through the gamut of diagnosis, starting with exercise induced asthma. Finally went to cardiologist and came up with the sic sinus diagnosis. After having the pm implant went back to running after the required 6 weeks off. Felt okay but some SOB but blamed it on being out of shape from time off. Time and training and this stil didn't improve, started having incidences of heart racing/ SOB when hiking or climbing stairs, basically any physical activity. Went back to doctor thinking pm just needed to be adjusted. My report showed AFib incidences and doctor put me on Meteropol and Flecanide and said I should feel better. Well it's been almost 4 weeks and I would say it's worse. Feel like I'm an old, overweight, smoker who is trying to exercise for the first time. My biggest frustration is wanting to get back into see the doctor and being to told 4 weeks out. I also need to be educated on what my settings are and how they can be managed better. Need to know resources and questions to ask so I am the best advocate for myself and use my appt time wisely. Disappointed in results of pm and changing my goals. Went fro training for a spring marathon to a half, now not sure that is going to happen..

8 Comments

frustration

by Tracey_E - 2015-02-25 09:02:21

I can see why you're frustrated! First thought is, don't blame the pm. All it's doing is adding beats when your rate drops off. If your rate was too low, you needed it. Now you just need to sort out what else is going on. This can take some time, but it's not at all uncommon.

How long were the afib episodes? I would question two meds. If it's minor, maybe just the metoprolol would take care of it.

When I started a beta blocker, they said 4-6 weeks to adjust to it but for me it was more like 3 months until I felt like myself again. They make you tired and they affect stamina. Even now, several years later, I don't have the stamina I did before. It doesn't keep me from doing anything I want to, but some days it makes it harder. I run and do Crossfit, but many days I struggle to keep up with everyone else in class.

If you are racing on exertion, it could be the afib, it could be general tachycardia, or it could be that your rate response settings are too sensitive. Rate response senses that you are active and raises your rate for you. There are quite a few settings associated with this and it can take a few tries to get it right. If they adjust a few times and it's still not right, ask for a treadmill. Let them hook you up to the pm computer and watch what happens when you exert. This can save a lot of trips back.

Ask them to send you a copy of your pacing report. That can give an idea how/when you pace as well as how much time you spend in afib.

You didn't fill in the profile so I have no idea how old you are or where you are. Can you get another opinion? This doc sounds like he would rather write prescriptions and take the easy way out than look for a solution. Active pm patients are in the minority so often when we have issues they have no idea what to do with us. That's ok because there aren't a lot of us, but writing us off is not ok. That's when it's time to do some homework and look for alternative solutions. Imo, an appointment 4 weeks out when you are struggling is unacceptable. When I've had trouble with my settings,I've never waited more than a day or two to be seen, at the very least a phone call back the same day.

My last advice is give it time. You are used to performing at a high level and that's not going to come back overnight. Your body has been through a lot. It's normal to take some time to puzzle it all out and get the right combination of meds and settings, it also takes some time for your body to heal. A magic wand would be nice, but I haven't found any yet. You'll get there, learn all you can and stay on them.

welcome

by wjs1954 - 2015-02-25 10:02:21

To the club of fit active PM people. Like Tracey said there are many of us and some doctors just do not get it. I was a aleast an average runner years ago best marathon of just under 3:13. Last marathon just prior to the heart issues really starting to show up was just under 6 hrs. Love my cardiologist but as she says "you are young and active" it may take time. I am just over 60 not to young and at times not to active. I guess what I am trying to say is at times we just feel like what the heck, just get me back to where I was or at least near there. For me anyway I have my up and down days. It's been a year for the PM and I am not where I want to be. I guess I am better off than at my sub 6 hour marathon and I realize the 3:13 is long in my past. Life goes on just slower than days past.......... I am not saying give up, but maybe give in to the new you, for me anyway knowing my body just is not able to do what it once could for whatever reasons.

Most frustration

by Theknotguy - 2015-02-25 11:02:25

The most frustration for us active people is to wait. TracyE has very good input. But you do have to give your body time.

It took me over a year to adjust to Metoprolol. Walked around with a coat on for that entire year. Just could not get warm.

Cardio doctor told me 90 day post PM. It took me seven months. Your brain is telling you that you're healthy and should bounce back but the body doesn't listen to the brain.

It takes a while post PM implant for the body to adjust to the new set of rules. Add a new medication and it just takes longer. I think maybe why the doctor is asking you to wait is to see what happens after the Metoprolol and Flecanide take effect. For some people that's at least a month. It was for me.

The day before I had my heart event I moved 2300 pounds of wood. The day of my heart event I hiked three miles with the dogs. If you would have been able to tell me my heart event was going to happen, I would have looked at you like you were stark raving mad. But, like a bolt of lightening, I went down.

I also thought because I was doing better than 90% of my heart doctor's patients that I would bounce back within a few months. Wrong! It was five months before I could even attempt to do "normal" stuff. Seven months before I could. Over a year before I was at 95% of pre-PM exercise level. Yeah, I had more trauma than most PM people but it still took the time.

Oh, on the Metoprolol and Flecanide you need to drink more water. I'm doing 1/2 liter per 33 pounds per day. It will help you to adjust.

So listen to your body. Quit fussing that it isn't an instantaneous cure. Hang in there. It does get better.

Frustrated

by Swimrun - 2015-02-26 01:02:41

I appreciate all the feedback and this forum. There is such a gap between real life knowledge and medical care. I try to have my questions ready at time of appt but feel as if the doctors' agenda/time frame dictates what happens. Pharmacist had told me that I would feel the results of meds after a couple of days, obviously that was not the case. Good to know it could take up to 4-6 weeks. Also good to know that meds will affect my stamina and can explain why I am so tired. Good input on increasing my water intake as currently I only do half my body weight in ounces.
I'm trying to be patient and positive. Run by myself now since I have to stop and recover frequently. I start each running saying thanks and end it that way. Just hard to give up goals and switch up your identity.
Bio: 55, female. Active, healthy and healthy lifestyle choices.

being healthy

by Tracey_E - 2015-02-26 01:02:48

Know that electrical problems just happen. Poor life style choices lead to plumbing problems- clogged arteries, etc. Electrical problems often happen in an otherwise healthy heart. Nothing we did caused it, nothing we could have done differently would have prevented it. It's a short circuit. Ever have a new tv die when the 20 yr old one in the next room works great?

more

by Tracey_E - 2015-02-26 01:02:48

160 is your upper limit, the highest the pm will pace. It only applies to av block for the most part, when the atria is doing its thing and the pm's job is to make sure the ventricles keep up. It'll keep them in sync, but only up to 160. It can probably go a little higher if you are bumping it. Most of them go to 180, one of the Medtronics will do 220.

You generally can't reach the tech yourself, the cardio's office will do it for you. Every office is different. Some drs check the pm's themselves, some have nurses trained to do it, some (like mine) bring in the tech to do all the checks once a month on clinic days. I got my first one in 1994, have been through 4 batteries, and still have the same tech that i met in the hospital when I got the first one. I love my doc, but the tech knows more about the pm and its settings and he's the one I talk to when I have trouble exercising.

When they run those reports, ask for a copy. We can help you figure out much of it.

Definitely log the dates/times of incidents. If you consistently have incidents while running, I would probably back off a bit for now, take it easy until you figure out what's going on. No need to use a heart rate monitor, half the time they aren't accurate for us anyway.

Don't go changing how you see yourself and giving up on your goals! This is a bump in the road, not the end of the world. Since I got my first pm, I learned to ski, kayak, got addicted to hiking, started Crossfit, ran my first 5K. I'm in the best shape of my life, thanks to the pm not in spite of it.

Hi Swin run.

by baza1976 - 2015-02-26 03:02:41

I posted something recently similar to you. http://www.pacemakerclub.com/public/jpage/1/p/story/a/storypage/sid/34077/content.do

I have posted a bit of an update again this morning before I came across your post.

What help me improve was a change to the "tracking". My lower chamber was tracking my upper chamber up to 150 bpm. When the upper chamber went above this the pacemaker would reduce my lower chamber to 75. This caused me to struggle with breathing, feeling sick, weak legs. I would have to stop for a min or 2 till everything came back.

At my last pacemaker tech visit the increased the tracking to match up to 170. It made a massive difference. But, as per my latest post. I'm still having trouble with breathing a slower pace. I'm nearly there just a few more tweaks.

Can you not contact the pacemaker tech rather than the doctor?

baza1976

by Swimrun - 2015-02-26 10:02:12

If I could go directly to the pacemaker tech I would love it! Is that possible and how do you go about reaching them? Prior to being released from the hospital the tech came in and ran a report on my pacemaker and made a point to tell if things need to be tweaked during the course of all this that they can do that. It's hard going into the cardiologist with a concern and then being given meds and see you in 6 weeks. Impossible to get in any earlier. When I have my incidences I usually log it with date and time and activity. Should I use a heart rate monitor for that purpose as well? I don't know much about my settings on the pacemaker besides it being set at 60-160. I understand the 60, what does the 160 mean? I'm guessing I can't find out what settings I have till my appt, but, what one's should I be concerned with?

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