hi! (introduction)
06/03/10
Hi! I’m Jamie and I just found this site. I am 26 years old and have Ebstein’s anomaly and Wolff-Parkinson-White syndrome. Most of my complications are more from the WPW but I would like to share anyway. I never knew I had anything wrong until my first SVT episode at age 12. Once they started I had one every couple of months. Sometimes my heart rate was around 340 beats per minute. I had an electrophysiology study when I was 16; after that they happened a lot less often- a year or more would go by without anything happening. When I was 22 I had my son with no heart-related complications during pregnancy or childbirth. Last week I had another SVT episode- slower than my usual ones at 206 beats per minute, but this time it hurt me more than ever before. I had a hard time breathing and just saying a few words was exhausting.
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Hi Jaime. It sounds like we have similar issues. I too have Ebstein’s with WPW. I have only had 3-5 episodes of SVT but I’ve already been through 3 EP study’s and ablations at the age of 28. Thankfully it’s a rather non-invasive procedure considering other surgeries. This past year I’ve really felt the Ebstein’s. Weakness, lightheaded, decreased activity. Are you experiencing anything like that?
Comment by Matt — December 28, 2010 @ 8:19 am
Hey, nice to meet you. No I haven’t really felt much different, during the SVT is really the only time I feel like I have any problem at all. Then again, one of the cardiologists told me recently that my frequent migraines could be related to it. I had my second EP study/ablation back in September. I know in the grand scheme of things that procedure is no big deal, but it took me a while to recover from it this time…not sure if that’s because I’m a lot older now or what.
Comment by jamie83 — January 12, 2011 @ 6:39 pm
Hi,
I’m still coming to terms with being able to communicate with people with the same problems I’ve had all my life … it is incredible.
I have Ebsteins, had surgical correction of WPW (Back in the dark ages of the 70′s) and another non-surgical ablation in the 80′s. I used to have SVT’s of around 360 bpm and it definitely wasn’t a pleasant experience. I had over 50 emergency admissions to hospital between the age of 10 and 15 because of the WPW. Before the age of ten, they were usually able to get them under control at home with a visit from the GP.
After the surgery I used to get a lot of a SVT’s with a rate of around 180 – manageable but tiring. I used to think that perhaps I just had a really high sensitivity to the activity going inside my chest … sometimes it felt like a football match being played out, other times it felt like it was being squeezed in a vice … either way, not pleasant. The placement of a stethoscope used to be unbelievably uncomfortable when this was happening.
Even now, when I have times of irregular or rapid heart activity, if someone pats me on the back or gives me a hug it is really uncomfortable.
I had my first SVT at 7 months and I’m 52 now … so I’m happy to help, listen or just be here for any of you.
Technology and medical procedures have certainly improved since I was a kid, but regardless, it’s your heart and whatever you feel or however you feel – it’s real! And just cos a procedure isn’t as big a deal in the grand scheme of things, it is big because it impacts on you – you’re the one who feels what you feel … and remember, it is your heart that is being treated.
Comment by Kathy — February 20, 2011 @ 11:49 pm
I’m Miranda and have had this since birth. I had my first open heart surgery at 18 months old and received a mechanical triscupid valve. I had my second replacement of the mechanical with a bovine one. I have two beautiful daughters and am “healthy” for now.
Comment by Miranda — March 14, 2011 @ 4:27 am