Recently diagnosed looking for guidance

Hello

I am now back in work and had good days and bad days. They have changed my stomach pills and the blood thinning tablets from the clopidogrel to something else and it made the symptoms ease off. I still get night time moments where my blood pressure drops and I feel dizzy and spaced out and sick and I still am getting chest pains on the left side when laughing too much or over exhaustion.

Taking each day as it comes, putting on weight also as assuming heart working less and much less activity than before. Trying to eat before 7pm tobstop the acid reflux at night time.

If symptoms continue at 3 month check will review the nickel thing again then, although I’m allergic on the outside he said it might be different instead or could all settle down.

Thank you for asking

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Wonderful to hear that there has been some improvement Leanne! How nice would it be if it would eventually settle down and go away very soon. Some of your symptoms remind me of @Sarah_UK’s post a while back on this thread: Sudden onset Fatigue after Asd closure. She dealt with symptoms such as fatigue for the three months when she was on clopidogrel, and got much better after she was off of it.

Here is hoping you are 100% very soon Leanne! Please take care of yourself- would love to hear back from you on if the symptoms are improving.

-Arjuna from ModSupport

@Alison1972 has just joined us! After recently being diagnosed, she is awaiting a closure device. Thought this thread started by @cecilan1 would be helpful to you Ali! Please feel free to ask us anything, or expand on your story :slight_smile:

Take care
-Arjuna from ModSupport

First, they should have the plan of when they are doing catheter that they are repairing it same time. Mine was.

Second, I woke up from surgery no longer requiring oxygen full time, full of energy and for first time in my life, my digestive track and lungs felt relaxed.

I was walking the halls unassisted after I past the laying flat on back period (to prevent blood clots).

I am able to have the percutaneous patch closure and not open heart! My appointment was scheduled for October 30th, however I will not be able to have it done then due to family members being it of town, as well as academic obligations. Hoping to reschedule within the next two months and finally have this ASD behind me! Thanks for the responses everyone! I am hoping to feel better and run a marathon within a year of having this done

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That is wonderful to hear that you have a concrete plan now @cecilan1. It has no doubt been a major burden for you, and we are rooting for you to get that marathon completed! How inspiring would that be… please do keep us posted, would be great to hear your recovery story.

Best of luck @cecilan1, and take good care.

-Arjuna from ModSupport

@cecilan1 Hope all is well with you. I would like to introduce you to one of our new members, @LM26, who has had a percutaneous closure performed after ASD diagnosis, and is now doing great. I figured you may be interested in recovery timelines, as you want to complete a marathon soon! :wink:

Good luck!
-Arjuna from ModSupport

Hi - Happy to answer any questions you may have. I recently (early October) had my approx. 1.5cm ASD closed percutaneously. I found the most challenging things to be (i) nervousness about the procedure itself; and (ii) not exercising after the procedure. I’m now approximately 2+ months post-closure and feeling really well. I’m older than you (40), but I’m back to my pre-closure workout routine, including 45 minutes of weights followed by a 4-5 mile run each day. I’m happy to answer any questions you may have. This site was very helpful to me to understand what to expect as part of the procedure, recovery, etc. So, please feel free to ask. Thanks.

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@LM26 a 4-5 mile run every day just two months after the procedure!? @cecilan1 would be thrilled to hear that. It is so nice to hear that you’re going strong @LM26. As you may have seen, there have been quite a few threads discussing exercise on here. Here is one that particularly came up to my mind after I saw your profile: Running and working out

Although many of the folks on there had open heart surgery, and hence a different/longer recovery timeline, it will be great to see you contribute to that thread… since you have conquered both running and working out :smiley:

Looking forward to hearing more from you @LM26, and welcome once again to our community!

-Arjuna from ModSupport

Hi cecilan1,
I was recently diagnosed as well. It was known I had it for about 5 years and was told by my cardiologist not to worry about it until this year when problems came up. First test after US found a problem was a TEE. After that, my diagnosis changed to sinus venous ASD and that I needed open heart surgery, that is when they wanted to do a cardio cath.
My cardiologist told me they couldn’t see it through a catheter, so now I am set to do an MRI of my heart for a better look 2 days before surgery.
Best,
James

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Hello, it’s my 3rd month since the procedure. My asd was 20 cm. I started light workouts 2 weeks ago but petrified thinking it may knockout the device. Does exercising affects the device’s positioning?

DO NOT. Lift heavy objects. Remember it takes about 6months to fully heal interms of tissue growth

How are you? Would love an update . Hope all went in your favour.

Were you able to run those distances before surgery? How do feel differently after having the surgery (more energy, easier to breath)? Thank you for sharing your experience! I was able to run a marathon last year, however, running has been getting drastically harder and I find I get palpitations after excessive exertion. I am hoping to get back to where I was at and you are certainly giving me hope! Best of luck!

Just to add, I have not gotten my surgery yet, as I rescheduled to seek surgery at the Cleveland clinic in May for transcatheter percutaneous closure. (2cm asd, 24 year old male)

Hi - Yes, I was able to run those distances before surgery. I didn’t have any significant symptoms (other than skipped heart beats/palpitations) prior to my procedure. That said, since my procedure, I have noticed that my heart rate is lower while working out, my heart rate recovery is improved and my resting heart rate is lower (approx. 55). I also breathe a little easier.

I will say this: once I was diagnosed with an ASD, I was much more aware of palpitations, breathing, heart rate, etc. I’m sure a lot (all?) of that is mental, and I think it’s nearly impossible not to let your mind play tricks on you once you’ve learned about a congenital heart defect (after all, it’s your heart!). Nevertheless, I continued to exercise until a day or two before my procedure, since I knew I’d have to take some time off. I’m now nearly 5 months post procedure and I’m easily where I was at pre-procedure.

I wouldn’t worry too much about getting back to your marathon days. My understanding is that for patients who have symptoms pre-procedure, those symptoms subside quickly and patients feel better very quickly. You’ll be super relieved once it’s over. I was very nervous too, and I can honestly say nervousness was the worst part about the entire process.

Good luck! Feel free to reach out with any other questions.

Thank you for the quick reply! Prior to diagnosis I always noted that it took quite a while for my heart rate to return back to normal after strenuous exercise, so definitely makes sense that the ASD is the culprit. How soon did you return to some level of aerobic activity after the procedure?

Hi - Sure! I waited two weeks (15 days to be precise) before I went back to running. I took it easy and started with 2 miles at first. After 3 weeks I went back to both weight training and running. I felt good, though I did have some skipped beats/palpitations, which were more worrisome than anything else. My cardio said he wasn’t worried, so I just dealt with it and it got much better. Again, please feel free to fire away with any more questions.