Back from EP Study

[Yokena]

Hi Everyone,

Just thought I'd report that I finally had my EP study done after it was re-scheduled twice. If you remember, I posted earlier and several folks responded with some encouraging messages about what it would be like. Thanks to all of you folks, but boy, was it ever more than I bargained for!

Because of my congenital defects, the "geography" of my heart is apparently very different and after spending over 5 hours in there, the doctor called it quits when my blood pressure bottomed out for the third time. The good news is that he was able to find where the problem is and that is not a life-threatening one. I have atrial tachicardia coming from between the two atria.

I am starting on 25 mg Toprol XR twice a day. If it doesn't do the trick, we'll do an ablation only this time the doctor will know right where to go and won't have to spend so long in there. The worst part of the whole thing was that my body wasn't metabolizing the heparin and I had to stay flat on my back for over 16 hours before they could pull the 5 sheaths in my groin. My back was hurting so bad I wanted to cry. Once I could sit up I forgot about that tho, because I started throwing up. I was sick the whole hour and a half drive home!

Anyway, I'm home now, and feeling much better. Just wanted to report in and than everyone for the support.

Joyce in Mississippi

 

[Ross]

I'm happy to hear the report, but not to happy at how it all went. Bet your not either. Put it in the back of your mind now and move forward. Sorry it was a bad experience overall.

 

[Gnusgal]

I am so sorry your experience with the EP study was so awful. I also have congenital defects that leave a lot of docs scratching their heads, but my EP study was done with a doc who specializes in CHD, so that was probably the difference. Do you mind my asking what defects you have? You can see mine below.

Hope the meds do the trick!

 

[Yokena]

Thanks

Thanks

Thanks, Ross and Niki, for the sympathy. That's exactly what I was whining for!

Niki, I have Ebstein's anomaly (tricuspis valve in wrong location and with only one leaflet) which was corrected by putting a porcine valve in the correct location two years ago. I also have a bicuspid aortic valve and right bundle branch block.

I'm curious why you have a mechanical tricuspid valve. I was told that since the pressures are lower on the right side of the heart that a mechanical valve wasn't necessary. Why was your tricuspid replaced?

Thanks again for the support!

Joyce in Mississippi

 

[hensylee]

Joyce - it truly was more than you bargained for, tho in the long haul, it will turn out to be worth the trouble. At least now there's a target area and an answer not requiring major surgery. And that's good news. Hang in. God bless

 

[Nancy]

Finding the right spot for the ablation is so important. My friend had one, it didn't take, and then had another which turned out to work perfectly, They had to go deep, her doctor told her that any deeper and he would have to get special permission to do it. She went to Cleveland Clinic. No more problems for her.

So I guess what you went through will end up being good for you in the long run.

 

[Yokena]

Good Points!

Good Points!

Thanks Hensylee and Nancy, you are both exactly right, of course, that finding the right spot in case they have to go in again is a very good thing. The doctor said he took pictures of "everything" and that it is very useful information for my future treatment, which is also a good thing.

Someone mentioned going to a doctor specializing in adults with congenital heart disease. I live in rural Mississippi and there is no such animal here. My regular cardiologist has a lot of ACHD patients, but the EP doc does not. My ACHD card is at the Mayo Clinic, but my husband is not well right now and we just couldn't travel there. It seems to have turned out okay overall, tho.

Thanks for the support!

Joyce in Mississippi

 

[Gnusgal]

I don't completely understand it, but I can give you a simplified explaination...

I have trasposition of the great vessels. So essentially, the way my heart is set up, the right and left ventricals' jobs are reversed. The stronger ventrical only has to pump the short distance to my lungs, but the weaker ventrical is forced to pump the long distance to my body. The doctors called the ventrical that they replaced the "morphologic tricuspid." I think that means that if my ventricals were set up right, that would actually be my mitral valve, but since they aren't it's job is that of the tricuspid. And since it is in the ventrical that has so much added pressure, it needed replacing...

Does any of that make sense??? When I was little my doctor would say "Her right side looks like a left side, but acts like a right side." This is because along with the trasposition of the great vessels, I am also situs inversus (mirror image of all organs). And my valve surgeon wrote in his surgical report ""At operation we found the expected very difficult anatomy." I baffel a LOT of people. I don't like going to echo techs that don't understand CHD because they get completely confused. I once told a tech that my heart was on the oposite side, and he went to the left anyway. Then he was confused when he couldn't find my heart... I had to walk him through the whole process, then he ended up bringing two doctors in to help him figure out what to do.

Anyway, that's my general story.

 

[Gnusgal]

I don't completely understand it, but I can give you a simplified explaination...

I have trasposition of the great vessels. So essentially, the way my heart is set up, the right and left ventricals' jobs are reversed. The stronger ventrical only has to pump the short distance to my lungs, but the weaker ventrical is forced to pump the long distance to my body. The doctors called the ventrical that they replaced the "morphologic tricuspid." I think that means that if my ventricals were set up right, that would actually be my mitral valve, but since they aren't it's job is that of the tricuspid. And since it is in the ventrical that has so much added pressure, it needed replacing...

Does any of that make sense??? When I was little my doctor would say "Her right side looks like a left side, but acts like a right side." This is because along with the trasposition of the great vessels, I am also situs inversus (mirror image of all organs). And my valve surgeon wrote in his surgical report ""At operation we found the expected very difficult anatomy." I baffel a LOT of people. I don't like going to echo techs that don't understand CHD because they get completely confused. I once told a tech that my heart was on the oposite side, and he went to the left anyway. Then he was confused when he couldn't find my heart... I had to walk him through the whole process, then he ended up bringing two doctors in to help him figure out what to do.

Anyway, that's my general story.