First some background: I have recently had swelling in the legs (L>R) and there was some pain along the inside of my leg. At first I thought maybe a clot or leg valve disease of the great saphenous vein? But with a Doppler a clot was ruled out. I saw my primary Dr and he thought my veins looked good and maybe it had just been a superficial thrombophlebitis. He however set me up to have an Echo done. I wait a few days for that and then I am in there just waiting to get through the echo....Eyes closed trying to be calm....when the tech says, "I think we may have to do some bubble contrast to see your heart better...I think you may have a hole in your heart." I was like 'UHNN??? What?" I looked up at the screen from then on until the end of the test. She felt it was a left to right shunt as the bubbles didn't cross right to left. Anyways. I watched the thing from there on out and being a nurse I knew the anatomy of the heart. I could see where the septum would separate and then almost kind of close with each beat (at this point it is beating pretty fast!). So I stay calm (It is a Friday of course). So I wait all weekend and get a call from the LPN on Monday. She says my function is good but I have a "small hole in the heart. And that isn't the cause of your leg edema." Not sure about that! I think it could be! I also get dizzy -more and more recently. It is the weirdest thing! Just all of a sudden the room spins. I actually have to hold onto a wall! All this while I was walking a client!!! Sometimes I get a pain in the chest and feel pressure there as well. Sometimes when going to sleep. Okay so my question is as adults have any of you had a Dr tell you it is small enough that they were going to let it be? I have my first appointment with a cardiologist in 2 weeks so at this point I don't even know how many mm's it is or how big/small it is. It is definitely worrisome to think I am psyching myself up for a cath/repair and then imagine being told no I don't need to fix it? (of course all of this is in my head!). I just, having read about the afib, the risk for stroke and pulmonary hypertension later on in life, feel like I should get it fixed no matter what size it is. So My Question Is Has A Doctor Ever Told You An ASD Doesn't Need to be Fixed? I know, I know just wait the two weeks. I just honestly think I will be disappointed if he says I don't need to get it fixed. I would rather do it now when I am just in my 40s!!! Is this shortness of breath part of it? I feel like I am always having to take deep breaths. Lately it is as though I can't get the air into my lungs. It gets stuck. Gosh the other day I was outside and neighbor was burning leaves. I about died and couldn't find my inhaler. Ah well. I guess patience is a virtue.
Also my whole life I have gotten very bad bronchitis, sinus infections. In 2009 had whooping cough for 3 months. I actually broke a wooden lap desk straight down the middle while coughing! A great souvenir. Also I have always had very cold fingers and toes. I have to wear down boots and mittens. I am fairly certain I have Raynauds Syndrome. Maybe It is due to the decreased blood being pumped out....ah well who knows. I should just go to bed! Sorry for the Novel here!
Sorry....I guess I am just talking to myself tonight! I heard the amplatzer device is made of Nickel? Is that true? I did a search but I wonder if they are of a different metal now? I am very allergic to nickel. Anyone else who is that had the amplatzer device? I read about a woman who was allergic who had terrible pain after hers was in until it was removed. Yeah go to bed....I need to! I will go knit for a bit and relax!
Hi U2RN!
i am very sorry to hear that you got diagnosed but not to worry there are many people here that can help you. My sister was diagnosed 4 months ago and had OHS 3 weeks ago.everything went fine so you should know that either u need operation or not it Will be fine!many also do the amplazer technique and are also fine.
i am a doctor (not a kardiologist though) and i know how it must feel to have medical knowledge and how much stress that can cause…
i think that you get operated if you have symptoms or if the asd has made the right side of your heart enlarge.Of course your physician knows what is best for you!
i have read that people with asd can get many pulmonary infections so maybe your symptom can depend on that…
hope i have helped a bit…
about nickel allergi i remember there is another diskussion about this…
search a bit in previous diskussions
Hi U2RN,
if you are getting the shortness of breath and the shunting I guess your doctor will want to do some kind of closure.
The amplatzer is made of nickel so it sounds like you won't want that. But I am sure there are other options for
people with nickel allergies.
THE WAITING IS THE WORST PART.
I am so sorry they are keeping you waiting - I know that once the doctor gave me my diagnosis and surgery date I was so relieved but it took me ages to get to that point.
This board offers great support - keep us updated on your status.
best wishes,
Jennifer
Hello:
Yes two cardiologists told me my ASD did not need to be fixed and to come back in a year for a follow up. I got another opinion and that cardiologist saved my life. I had pulmonary hypertension and my right ventricle was enlarged. I had open heart surgery in April of this year. I had the ASD closed and had a tricuspid valve repair. The first two doctors didn't even catch a problem with my valve. My symptoms included dizziness, low blood pressure and pulse, fatigue and rapid decline in athletic performance.
I wish I would have had the surgery 10 years ago as I have permanent issues with my right ventricle and may never run as I did before.I am very thankful I did not continue on without the surgery as I would have had congestive heart failure sooner than later.
Just because I needed a repair, doesn't mean you need to. But remember that it is very acceptable to get a second or third opinion. Feel free to ask me any questions and the very best thoughts go out to you as you travel through this medical journey!
Thank you all so much! I guess i better just have my questions lined up and ready! I do feel out of breath more even now. I had edema to my left leg greater than my right but now it is pitting in the last week. I push on it with my fingers and it stays there! Thanks all! Will keep you updated…
I know how scary it must be for you right now. I had shortness of breath, too and it actually got pretty bad. My doctor told me it was up to me if I wanted to have the closure but he said that if it were him, he would do it. If you go through the groin, it's really not bad at all. The waiting is the worst part....I wish you good luck and keep us posted. You will be okay:)
U2RN said:
Thank you all so much! I guess i better just have my questions lined up and ready! I do feel out of breath more even now. I had edema to my left leg greater than my right but now it is pitting in the last week. I push on it with my fingers and it stays there! Thanks all! Will keep you updated...
Hello U2RN
I was officially diagnosed with ASD September 9, 2013. I have alot similar symptoms as you. I am 43 years old. I have shortness of breath when I go into atrial fibrillation, usually brought on by physical exertion, or a heavy meal. My diet has changed alot. Right side of my heart is enlarged. I am being treated for ASD but the process seems very slow. MRI and a TEE is coming up in Febuary 2014. Until then I am really taking it easy. This condition is repairable. Hang in there U2RN.
Hi. I was diagnosed with asd (18mm) in Feb 13 and had a cath closure in May 13. I was 37 and had been suffering from symptoms for about 2 years before my diagnosis. I was VERY tired and dizzy. I had shortness of breath and just felt bad. I had zero energy and felt like I was dreaming all if the time. I was so out of it. My left side of my heart was slightly enlarged which is why they closed it. The procedure was very easy and I was comfortable. I was in the hospital for 2 days and I walked out of the hospital and felt better! I felt like I could breath deeper. It’s wild! At about 3 months I noticed an increased energy and am so grateful! I hope you feel better soon!
I also have an intolerance to nickel. That is why they used the Gore Helex Occluder for me. Same concept, less chance of reaction. :)
U2RN said:
Sorry....I guess I am just talking to myself tonight! I heard the amplatzer device is made of Nickel? Is that true? I did a search but I wonder if they are of a different metal now? I am very allergic to nickel. Anyone else who is that had the amplatzer device? I read about a woman who was allergic who had terrible pain after hers was in until it was removed. Yeah go to bed....I need to! I will go knit for a bit and relax!
I was told that if it's small they don't always close it. Mine was big enough and they found it after I had a stroke at 42. That is why they strongly recommended a closure procedure.
Hello U2rn. I was wondering if you had your ASD repaired. If so, how are you feeling? Mine was repaired on April 2013.