New Member

I am new here. So glad to have a support group. I am 36 years old RN, wife, and mother of 3( 14,5,1) who just found out I had an ASD in February. I never had any issues as a child with PE (eventhough I hated it). I even danced and cheered for 5 years from middle school to high school. It wasnt until that morning in February when I noticed that the shortness of breath I was having was getting progressively worse. I ended up in the emergency room with chest pain, shortness of breath, and tachycardia. After I was checked for heart attack, the doctor was going to send me home. I am a nurse and I don’t go to the hospital for the fun of it. I have to be a little firm and tell that doctor if he didn’t fix this I would be back in the ER everyday until they found out what was causing my symptoms. Well I was admitted and test were run the next day. I have an ECHO with bubble test and treadmill stress test. The ECHO showed the ASD. I passed out after the stress test from my vessels vasoconstricting. I was later taken to have a TEE done to see how big the hole was. I was later told by an adult cardiologist about my ASD and that I would need open heart surgery to repair my ASD. I was in a state of shock and didnt know anything about this. That cardiologist thought about it and stated that he wanted me to see a pediatric cardiologist. I met with him and he has the best personality. I am happy to have him as my cardiologist now. He was very encouraging and educated me well about ASD to the point I was comfortable. He preformed my closure on 3/31 via cardiac cath procedure. I have a .19mm amplatzer septal occluder now that I plan to name since its my new friend. I am only 4 days post op and frustrated that I can’t complete some task that I didn’t prior to the closure. I know this will get better as the time goes by as my body adjust to something is didn’t know was normal for 36 years. Just ready to get back to exercising again.

Did you have ph develop from your asd? Any rihht heart enlargement? And did you do transcath or open heart?

I did have mild right sided enlargement. My procedure was done transcatheter. I was told back in 2015 that I had PH but second echo showed nothing. My adult cardiologist told me it got better with my blood pressure being controlled and the weight I had lost. I had horrible SOB with my last pregnancy and was closely followed by cardiology. They chalked it being pregnant. I ended up going into preterm labor and delivering at 34 weeks. My little boy is a healthy one year old but I can’t help but think his early arrival was the result of my unknown ASD.

it does sneak up on ya eh? I never thought much about the lightheadedness, dizzy spells etc. until a TIA hit me one night. I almost let that one go too, except that both my parents has suffered strokes in the year before. They ran some tests…almost a month went by and I was feeling fine. They called me back in to discuss the tests and I was sure it was just to go over the non-results. The Cardiologist asked me if I knew why I was there and I even replied that “I assume it’s just to go over the tests” his reply was "well let me tell you why you’re really here"
I had no clue of any of it… echo-cardiograms, bubble studies, a tube down my throat…i forget what all else… and them telling me it had to be open heart surgery. (size of a 50-cent coin and right next to a partially torn valve)
Recovery was slow but good (about 15 weeks total) Apparently they took a graft from an artery in my shoulder. I feel fine now. But a slightly enlarged right side and my cardiologist tells me its a bit weak so I’m also on Entresto now.

My goodness, your stories are amazing! Glad to hear that you are doing well.
Seenie from Moderator Support

Hello everyone…I am a new member. I had a stroke on December 11, 2016, and was diagnosed with an ASD the next day. I had a Gore Helix Occluder implanted on December 15 - which was complicated by the fact that I have one kidney. They could not give me general anesthetic or anything that might interfere with me telling them that something didn’t feel “RIGHT”…most painful experience of my life! It is seriously surreal to feel someone literally “playing” with your heart. Anyway, while implanting, the cardiologist (the #1 on the California Central Coast) nicked the side of my heart. Two hours later, I coded due to fluid around my heart. My blood pressure was 10/5 and in order to keep me alive, the doctor had to extract the fluid from my heart with a syringe…good thing that I didn’t see the needle or feel anything with that one…but it did keep me alive. The next day, I had a-fib and my heart rate went to over 400…had to have three doses of Amiodarone to fix that one…so, I almost died three times in 5 days. The cool thing is that I couldn’t move my left side on December 12, and on December 28 I walked out of rehab. I use no cane or walker, and went back to work as a high school activity director on March 6. I walk 5 miles per day and am going to start the Whole30 challenge on May 1 in order to get my system on track to be healthier.
Now for the bad part…I was referred to a cardiologist in my town (I had the surgery in Santa Barbara, and live in Santa Maria) and he is AWFUL. I am on Amiodarone, and I feel that it is causing the almost constant chest pain, the dry coughing, the shortness of breath when I lie down or speak a lot, and the exhaustion at the end of the day. I went to see him earlier today, and he told me that is was NOT the Amiodarone, that it was psychological and that I needed to see my PCP for “nerve” medicine. I told him that as long as it was okay for me to take a hydrocodone every day when I get home from work, then that is fine…he told me that he approved of me taking the pain med - but I needed to get it from my PCP!!! I don’t like taking the hydrocodone, but seriously, the chest pain gets bad around 6 pm. But I am NOT a hypocondriac!!! That cardiologist reminded me of the gynecologist who tells a woman, “there is no such thing as cramps - it is all in your head.” Anyway, I am doing well, but I am going to my PCP tomorrow and telling her that I am not going back to that holier-than-thou doctor who has no clue what I am feeling and doesn’t really care, anyway. I know what I feel, and I know that it is NOT in my head.
Anyway…I feel extremely lucky that I had the stroke with all of the complications and lived to tell about it…and am really doing well other than those things. I feel badly complaining, because there are so many more who have it so much worse.

Wow. That was a pretty big ordeal. Hopefully you can find the help you need to deal with the pain. As a nurse we are told that patients pain is real no matter what our opinion is. People deal with pain differently. They must have really great medical equipment in California to detect your blood pressure that low and your heart rate that high. Praying this will get better for you.

Well, I don’t know about the medical equipment, all I know is laying in the hospital bed with my eyes rolled back in my head and hearing the doctor say “Her blood pressure is 10/5, and this is the last thing I can try. If I can’t get enough fluid off her heart, then there is nothing else I can do”…or the next day, watching the heart monitor in my room stay at 408 through two rounds of amiodarone injection into my IV and having a nurse tell me that they can only do one more injection - after that, there is nothing else they can do without permanently damaging my kidney. I am not a nurse, and I am only a witness to what happened to me. Yeah, I feel very lucky, and my PCP says that I am a walking miracle. I am going to see her tomorrow. It is just frustrating to read about the symptoms I am having, and that they are so well documented as side effects of amiodarone, and this doctor dismissed me! I have read that amiodarone is a very dangerous drug for lungs and kidneys - and he told me today that those are just “made up” - and that the amiodarone is keeping me alive. That is after just one a-fib episode and a really good ekg.