In late March, a Congenital Cardiologist investigated my ASD which was found in January..he diagnosed me with a secundum type ASD. He said it was "small", and "hemodynamically insignificant"...meaning there was no right-heart enlargement or wall thickening. Despite me having heart palpitations since December, occasional rapid heartbeat and shortness of breath, he has decided not to correct it and re-assess me in 3 years time.
In the past several weeks, my shortness of breath is present almost all the time during waking hours...it's even limited my exercise ability to a small degree. I've also had a little bit of pain in my upper left chest, and feeling fatigued. Obviously, it's all very distressing. It could be anxiety...but it could be my ASD too?
I'm so confused about my symptoms. If an ASD specialist (with 25 years of experience) has told me my defect doesn't need closure at this time...I should believe him, right?!
Has anyone else had to go through this? Suggestions or comments?
I would believe him and recheck in three years. It sounds like your symptoms Are still in the early stages. Open heart surgery is not fun, and takes a long time to fully recover from.
I think Your symptoms could be from anxiety. After I found out about my ASD I too had similar symptoms as you, especially the fatigue and occasional slight pain in my upper left chest. I had a feeling it was due to my anxiety, because initially I had a lot of anxiety. My ASD was a large secundum that needed to be repaired, and my right ventricle was slightly enlarged. Needless to say I was very stressed. The mind is a powerful thing, and it can effect your body. Be kind to yourself, think positively, and try to relax. As you know, worrying doesn't help anything. It sounds like you are in good hands with your cardiologist, but if you think it would give you more peace of mind, maybe you could get a second opinion.
I agree with the others in regards to getting second opinion. You know your body, listen to it. A doctor diagnosed me of not having an ASD using ultrasound and I definitely know that he is wrong, I got a second opinion and only until they did a TEE (Trans-Esophageal Echocardiagram) that they found out that the hole is a size of a 50c coin and only an open heart can fix it.
My life changed significantly after the repair. I believe if given a choice I would have got that surgery as early as I was a teenager, the limitations looking back, made me think I could have maximize a lot in my life, like getting A+ in PE, I was always behind any kind of sports because of my shortness of breath. I recently ran 5k that initially I could never do because my chest will tighten up (that is 30 years of restrictions, imagine what I could have accomplished lol). If you are concern if its anxiety or ASD, try doing something about your anxiety, a heart surgery is indeed a major event in your life that you need to be ready physically and psychologically. There are ways to deal with anxiety, a change of lifestyle, take your time, do not put so much pressure with a deadline and if you absolutely think that its not making a difference then take a look at fixing your ASD. My life changed after I fix mine and a lot of people in this board, maybe its also for you
This sounds very familiar to me. I was first diagnosed with a PFO. And because I was a hypochondriac, I was not convinced that it was just a PFO causing my right atrium to dilate. So I asked the doctor if an ASD is a differential diagnosis and mentioned a TEE. And that’s what got the ball rolling. My PFo is in fact a 9mm ASD that is causing quite a significant shunting. I wanted to do a wait and see approach as I did not have any symptoms. I also wanted to know about the degree of shunting so the doc performed a right heart cath and that’s when they decided that it’s significant enough to warrant a closure. If it was not hemodynamically significant based from those tests, I would probably leave it alone (personal opinion).
Shouldn’t be so hard to diagnose. I had large ASD closed 6 months ago with a gore helix device . I had palpitations for years and couldn’t gain cardiac endurance even with a trainer. All my tests showed severe rt heart enlargement and some pulmonary htn. Well the hole didn’t close so I was advised to wait 6 mons just in case it might and if not I would need OHS repair. Had a 2nd opinion and was told they closed a pfo and I never had an ASD. Cardiologist said I shouldn’t have had pfo closed.he felt heart was enlarged and pulmonary htn and tricuspid regurg were from massive pulmonary embolism a year ago. Don’t really buy that because my heart enlargement didn’t improve in fact everything got worse so the ASD made sense. It isn’t hard to distinguish a pfo from ASD on tee, bubble echo or rt heart cath. Pfo’s have a flap and are much smaller. Anyway I am going for results of repeat bubble echo tomorrow . I know for certain that the hole didn’t close since I watched test . I am hoping it got a little smaller and maybe heart enlargement is better but still have trouble walking into office or up 5 stairs. The palpitations are pretty much gone so that’s good news.i have seen so many MDs and have had multiple heart and pulmonary tests and the amount of disagreement is unbelievable. All my MDs have highly rated but at different facilities. Would be cool if they would discuss my case. Think if OHS is suggested I may have to go to Cleveland Clinic or Mayo . I just can’t go ahead with OHS with so much uncertainty and a device in my heart that didn’t close an ASD or pfo. As the 2nd cardio guy said, the interventionist was told to close a hole and that’s what he did. Find that hard to believe. I was wondering if others had ASD vs PFO diagnostic dilemmas . So glad I found your post