Pulmonary hypertension with your ASD?

i had a ASD Closure 16 months ago. Sine my procedure I have experienced chest pain, shortness of breath, dizziness, and arrythmia. I am now seeing cardiologist and pulmonologist to figure out these extra issues. I did not have my closure surgery until I was 41. Does anyone have a similar situation?
Thanks- Jennifer

Jen, I'm sorry you didn't get a response here. What did you learn from the pulmonologist?

Hi. I had mine closed Dec 2014. I did great for about a week but than started back with hypoxia, chest pain, dizziness and fatigue. My pulmonary pressures were “borderline” so they put me on Letairis- a drug for pulmonary hypertension. I am gaining some energy and stamina but still not feeling the best. Hope you get some answers soon.

Hi David,
Thanks for your reply. Well I spent the past month doing all kinds of tests. I actually did very well on my Echo and stress tests. But my pulmonary tests came back abnormal, but my doc was reluctant to treat me saying that the test must have malfunctioned?!
I have decided to try the congenital clinic at UCLA as I still have the hypoxia, chest pain, dizziness and fatigue. My doctors keep saying I have a perfect closure so it must be anxiety. I really hope I can get help at UCLA. 2 years ago I ran 10k races and now I am out of breath all the time.

Would love to hear from others who are still having trouble.

Jen, let us know if you find out anything else. I have those exact same symptoms and am on oxygen 24/7 now. Hope we both get figured out soon! Take care

Hi David - what is your oxygen saturation rate? I asked for oxygen but they said my oxygen saturation is too high. Just curious. Keep me posted on how you are doing.

Thanks, Jennifer

Oops, sorry I had not seen your question! Off of oxygen my oxygen saturation is in the 70’s to lower 80’s. With exertion can go even lower. When it first started, however, it was in the upper 80’s and the doctor had a little trouble convincing insurance. Luckily he did. From all I have heard,read,and learned; if the numbers are starting to dip to the low 90’s and upper 80’s it is best to have supplemental oxygen available. If you do not already have one, ask for a case manager from your insurance company. I found out late in the progress of all of this how valuable they can be. I am now on it 24/7 and would love to get rid of it soon but it’s not looking hopeful. I hope you get some answers soon.

I had my ASD repaired at 16, that was 29 yrs ago. I had 3 fairly large holes. Almost immediately I began to have problems with shortness of breath, easily fatigued, chest pain dizziness and headaches. Before my closure I had suffered from headaches and what the doctors believed to be epilepsy. I would pass out or faint/black out for no reason at all. During an extensive work up after the closure a pulmonologist told me that I had pulmonary vascular hypotension. But my next doctor didn’t believe it and told me that I was making everything up. Now 29 yrs later I’m no better off than I was 1 yr after my heart surgery. My right atrium is still enlarged and I still have shortness of breath and chest pain but because of my age the doctors won’t take me seriously and the ones who do I can’t get continued authorizations from my insurance to keep seeing. I have a suspicion that depending on the age of repair and the severity of ASD and damage already done that could cause permanent damage.

Had closure in sept and tricuspid valve was repaired at same time. Still SOB on exertion and require supplemental oxygen at night. Also can’t seem to get off 60-80 mg of lasix. I Gain a couple lbs of water as soon as I try to drop dose. Echo continues to show mild pulmonary hypertension. Right heart enlargement is improving but not resolved. I was told it could take a year to recover. Overall feeling better but progress is slow. Hope you had a chance to participate in a cardiac rehab program. My METs improved 80%

Well right now I am trying to switch health systems. The hospital I have worked with the past 2 years just keeps sending me in circles. They mentioned at my last appointment they want me to do cardiac rehab, I agreed, then I got a call from the nutrition department? And just to make it more fun they called to tell my insurance refused the nutrition appointment.


I am still trying to get seen at UCLA - at this point I am starting to realize that I may just have to live with SOB, fatigue and chest pain. Maybe it's just the reality of ASD closures after 40?

The hospital I have been going to is rated very high for cardiovascular care - but I am learning that we who have CHD are a different kind of patient. It seems to me that 90% of patients are getting cardiac care for acquired cardio issues so being a CHD patient makes us out of the ordinary.

I am still trying to find a doctor/hospital that will look at my issues and take them seriously.

Thanks again for all the replies and suggestions - I really appreciate everyone's input!




I found this blog from a woman in her 30s who went through complications after her device closure who had many of the same symptoms you're describing. This woman's journey is amazing and more important, she discusses the hospital she went to (John's Hopkins) and the surgeon who helped her overcome her device complications (the surgeon is now working at Yale but he's easily found online by his name given in one of the blog pictures). This doctor is on my short list to contact to get help after my nickel allergy tests are done (should they come back negative or positive).

My best advice: don't feel like you have to get used to feeling sick or that you're doomed to live with it -- 40s is not old at all and a great recovery is available to you too, you just have to find the right doctor who will listen and help you troubleshoot the problem until it's resolved! Don't give up!

Blog Link: http://annesheartstory.blogspot.com/

~ Katherine

P.S. When reading her blog, make sure to start out with her first posts in 2009 and work up chronologically by date to ensure you get all the important info of what turned out to be wrong with her implant and how she went about finding out what was wrong.

Thanks Katherine!

I read her blog and it was very inspiring - also made me realize my problems could be alot worse.

I'm actually having one of my "better weeks" symptoms haven't been too strong, chest pain is minimal, and not super tired. But I have learned this is the cycle I have a good week - get very hopeful everything is better - then a bad week comes and brings me back to reality.

Still trying to get into UCLA - I requested my medical records from my other hospital a MONTH ago. gotta love the chaos of healthcare.

If you end up contacting her doctor please let me know. I am also contemplating going to Cleveland Clinic as I know they are very good with ACHD patients. But that would be a huge financial commitment for us.

Let me know how your nickel test turns out!

Thanks, Jennifer

Jennifer -- OMG yes!! I know EXACTLY what you mean by having a "good week"!! My symptoms come in cycles too!! For me, most days my shortness of breath and chest pressure is present and non-stop but not extremely overwhelming and that's how it will stay most days; but sometimes I'll wake up in the morning and feel better, but then an hour after waking the symptoms creep back in and get strong again. And other days I'll wake feeling better and that better feeling will stick around for a couple days, and then the symptoms come roaring back super strong and I feel like hell again. The bad weeks are awful because it is so debilitating - all I can do is lay down because I'm so exhausted from the shortness of breath, the chest pressure and fatigue... it gets so bad that sometimes I have to sit down in the shower because I can't stand for that long. And heaven forbid I work out -- omg any exertion and afterwards my chest hurts so freaking bad for two days straight, feels like someone reached inside my chest and is squeezing my heart, ugh it's painful! But wow omg I thought it was just me having my symptoms come and go in intensity! Thank you for sharing that because that really hits home with what's happening for me!

My nickel patch test is on this upcoming Tuesday with an allergy doctor, and I'll have the results 48 hours after that so I'll give an update after that -- really hoping it tests positive so my doctors will take me seriously. Right now my UC Davis cardiologist thinks I'm nuts basically; he told me he doesn't think my symptoms are cardiac related, even though I've had every pulmonology test under the sun done to rule out other issues and my symptoms feel most definitely cardiac in nature. I also scheduled an appointment to have the nickel/titanium MELISA test in April too so I'm really looking forward to that as well to get more answers.

Hopefully you get into UCLA soon. I've been looking into their cardiac center too since UCLA is widely known for being a really prestigious cardiac center, and the fact that it's on the west coast makes it easier to access. My UC Davis docs are completely stumped and out of their league with my case. I just keep getting shuffled from specialist to specialist because no one knows what's going on or how to help me. My UC Davis cardiologist told me he's never heard of ANYONE having a bad result from an occluder closure and he's done a thousand of these closures -- which told me he wasn't the doctor for me because he's already made up his mind that I can't really be having an issue. Very closed minded! I need a cardiologist who is aware that problems arise from these closures and is open to hunting down a mystery!

Hopefully we all find the right help soon. If I stumble upon a great doc for these issues I'll make sure to share!

~ Katherine

HI Katherine,

Your message made me feel much better as well. Sometimes I feel so alone in this. I have ran out of doctors in my local area that I can see. I have the same problem you have - no doctor wants to admit that "occluder closures don't go well".

All I hear is about my perfect closure. Yet honestly I feel worse than before I had the surgery.

I am very interested to hear your nickel results. I spent 6 months pursuing that but I never got anywhere. I did have a nickel patch test that was negative. But the funny part is that I have had rashes from nickel jewelry. So maybe the patch sample was too small or the test was too short? I tried to schedule a MELISA test but I called 4 doctors and noone seemed knowledgable about it. Another DEAD end :(

I am still trying to get into UCLA - they have my insurance and know I am coming but won't see me until my records from San Diego are released. I requested them back on February 5th!! 6 weeks ago. I can't believe it is taking so long.

Hope to hear about your test soon! good luck!


OK finally I have something positive report. I am going to the UCLA clinic in April!!!!!

My old hospital finally transferred my records so I see the docs in April.

I know this my not be a magical solution but they told me they deal with alot of ASD patients with

further issues - so hopefully they will take me seriously.

THANKS FOR EVERYONE's support!! The journey continues...

happy St, Patricks Day,


That's very good news, Jennifer! Happy St. Pat's!

Yay that's great news Jennifer! So glad there's progress for you!! Happy St. Patty's indeed! :)

~ Katherine