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Irregular heart beat, extreme fatigue, shortness of breath - 9 months after OHS help?

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  • Irregular heart beat, extreme fatigue, shortness of breath - 9 months after OHS help?

    I had a quick question for those who are further out from their OHS. I was born with Tetralogy of Fallot and an absent pulmonary valve. I'm 36 now, but at 14 I had my first OHS where they inserted a St. Jude mechanical valve and closed the VSD. Everything worked ok, but over the 21+ years, I had pulmonary stenosis and the mech valve stopped working.

    In Aug 2009, I had a 2nd OHS, and they replaced the pulmonary valve with an On-X valve, and repaired my right ventricular outflow tract due to congenital pulmonary stenosis. I think they did a bit more since i had blockages. Obviously, since I'm older I might be healing differently than I did when I was a teenager, but the recovery for this surgery has been really tough.

    I have faithfully been doing cardio (walking 4-5x a wk/45-60 mins), low glycemic index diet, no caffeine, taking good care of myself, but I feel like I'm not getting better.

    About 2+ months ago, I started getting really tired and having shortness of breath. At my last cardiologist appt, he ordered a treadmill stress test echo, xrays, blood tests, and a 30-day cardiac event monitor. On multiple times when I send the results of the cardiac monitor over the phone, the operator will ask me to rest for 15 mins and then send the results. Today they said that I had rapid heart beat.

    About 10 days ago, my cardiologist's office called and recommended that I meet with an arrhythmia and cardiac electrophysiology expert. I'm a bit nervous because I feel like I've been more worn out than ever in the past 2-3 weeks, and I can't keep up in conversations because I feel so winded. I haven't felt this out of breath since before my first OHS when I was 14.

    I take Coumadin daily, and I was on Metoprolol for 3 months after the surgery but no longer take it. I also was given a 2 wk course of Lasix about 6 weeks after the surgery, and then a 5 day (7? can't remember) dose of Lasix in Nov, but not any sustained prescription.

    Has anyone been sent to a similar specialist or had experiences with these symptoms and what were your outcomes?

    For example, sometimes my heart will beat pretty fast, even when I'm just sitting down. And other times, it's like there's a huge THUMP in my chest. I never had any of these symptoms before or after my first OHS. I don't know whether to describe it as irregular heartbeats or erratic. Or I'm not sure if it's because of the Tetrology of Fallot and it's just something I have to deal with.

    I have really great doctors, but sometimes I feel that maybe I'm not using the correct terminology to connect my symptoms to their body of knowledge.

    Sorry if this is a bit rambling, but I've been lurking on this board since about Oct, and there seems to be a lot of good wisdom here. Thanks in advance.

  • #2
    i can't help you but that has to be very scary. hopefully you can find some answers soon!
    May 21st 2010- Aortic Valve Replacement w/ Arch Replacement
    Mild/Moderate Stenosis and Ascending Arch Aneurysm
    Diagnosed w/ Bi Cuspid Aortic Valve Feb. 2008

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    • #3
      Whew, I couldn't even begin to say anything about what's going on with you and I do wish you all the best in getting more information and resolution. Is there a friend or family member that could accompany you to your doctors' visits and perhaps better explain what you're going through? I'm gonna guess that by the time you get there, you're already getting worn out plus you have a certain amount of anxiety with this whole situation that it may be difficult for you to be your best advocate.

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      • #4
        *HI* and welcome onboard. I havent had any heart surgery, but I can relate to some of your symptoms. I have a.fib and when it is acting up my heart rate can suddenly shoot up and I will be extemely short of breath. Sometimes barely able to eat. I take a beta-blocker to keep my hr down. Without it I would not be able to function at all. Best of luck getting this sorted out Im sure you must feel worn out from it all, but keep your chin up. The EP guy will most likely be able to help you with the rhythm issues. I will keep you in my thoughts and prayers. Stay strong. x
        Jacqui 8-)

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        • #5
          You sound a lot like my best friend Tbone. Turned out he had veins growing into a portion of his heart. I can't remember now if it was oxygenated blood going where it shouldn't or the other way around. At any rate, I think you need to find the best doctor you possibly can to treat you. Can you make the Cleveland Clinic or Mayo?

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