New to the club

So...I was diagnosed with an ASD in 2004 when I was 30. Had no idea that I had anything wrong with my heart until I started having palpitations and shortness of breath that summer. Got it fixed in early 2005. I've had brief palpitations and sob at times but everything always looked good at my checkups. I had an EKG about five months ago and everything was normal (for me).

On Friday June 28 I woke up and left to go buy some scrubs. I felt like I'd been lifting weights with all the muscles of my upper body. Once I got home, I realized I was out of breath just from walking from the livingroom to the kitchen. I thought all of this was due to the heat.

On Saturday I went to the grocery store. The muscle fatigue now was affecting my legs as well as my upper body. I couldn't walk more than 15 paces without having to stop and rest. Carrying one bag of groceries three blocks home took me 45 minutes. Because I have a lot of anxiety and I'm out of shape, I thought it was "all in my head." On Sunday I skipped out on Pride Parade festivities and planned to take a cab to work instead of walking. My boyfriend convinced me to go to the ER instead.

They took me in right away and did an EKG and repeated it a couple of times until one of the techs said "I think that's actually right." They put paddles on me just in case. Then they told me that I had heart block (which I'd never heard of) and needed to be admitted and have a pm put in. I stayed stable through the night (although dropped below 40 bpm several times) so I had the surgery early Monday afternoon, July 1.

It's all so surreal. They looked back at an EKG I had in 2008 and it showed me in Lvl 1 of heart block, but no one had ever told me that and I was always assured I was "fixed" for good. I even had an EKG five months ago and it was fine. I've been told since the open-heart in 2005 that I have a long QT interval but that it's normal for someone who had ASD surgery.

So, I'm still pretty freaked out. Don't have a followup with the cardiologist until the 16th. I still feel little flutters and I'm sore, I don't know if any thing I feel is normal or anxiety. I still feel a little short of breath but the muscle fatigue is gone. They said I can go back to work already on Sunday as long as I don't lift anything. I have a Medtronics pm set at 40-150. I wish the followup was sooner but they said they couldn't get me in earlier than that (even though the surgeon wanted me to be seen one week after surgery).

5 Comments

thanks

by godzillaeyes - 2013-07-04 04:07:12

Thanks! Yes, they explained what heart block is. Is it always a progressive thing? Should they have told me back in 2008 that I was at Lvl 1 and it would/might get worse?

Well, like you said, it wouldn't have changed anything, and maybe it would have just increased my anxiety, but maybe I wouldn't have come so close to keeling over before getting checked out? Heh. I'm still curious about those questions even though what's done is done.

Oops.

by godzillaeyes - 2013-07-04 05:07:23

I may be mixing up Lvl and Degree.

welcome

by Tracey_E - 2013-07-04 10:07:39

Glad you found us! It's so hard to be blindsided like that, freaked out is normal. Did they explain what heart block is? It has nothing to do with blocked arteries. It's not unheard of to develop electrical issues after structural surgery to the heart. Knowing that wouldn't have changed anything since you would have needed the first surgery regardless, but it's a shame no one explained it to you before.
http://health.sjm.com/arrhythmia-answers/videos-and-animations

Welcome to the group. If you have questions, ask away.

Degenerative

by Tracey_E - 2013-07-05 07:07:31

No, it doesn't always progressively get worse. It can stay the same for years then suddenly get worse or it can progress slowly. Sometimes it never progresses. Sometimes it happens right after surgery but heals itself.

First degree is rarely treated. Even second degree is just watched unless symptoms are bad. I was born with third degree. Now kids with third degree are paced as babies but when I was diagnosed in 1971 they just watched it. I got by in 3rd degree with a pulse that never got over 44 until I was 27. It's not black and white. I think it would have been nice if they had explained it better but I don't think they did anything wrong by not going into every potential long term problem.

The hearts electrical system is not much different than anything else electronic! my fairly new pampered laptop has a dying hard drive, my daughters abused cheaper and older one works great. A crystal ball would come in handy ;)

almost two weeks later

by godzillaeyes - 2013-07-14 12:07:50

Well, things are going ok but I've had a chest cold since I got out of the hospital. I don't usually have colds for nearly two weeks. I went back to work for three days and then had to call out sick for two! I've been having a hard time breathing but it feels more like lung congestion/asthma than s.o.b. from my heart issue. But it still concerns me...my friend said most people don't know what CHF feels like, so she was afraid it might be that. I hope that isn't the case, but I know that I do have a cold because my throat has been sore and nose runny/stuffed up since a couple days after the surgery. I wonder if I picked up a bug while in the hospital and/or my immune system was weakened by the surgery.

I've still had some palpitations and get abnormally out of breath when walking up stairs or uphill. Sometimes my arms and shoulders get that 'weightligting" style fatigue but I can't find a specific trigger.

I have a list of questions for the cardiologist at my first followup two days from now.

You know you're wired when...

You fondly named your implanted buddy.

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