Can you give me advice about recovery after ASD closure?

I was diagnosed at age 40 with ASD. This summer I started having severe symptoms - fainting, pressure on chest and severe shortness of breath. It took months of doctors and tests but finally they found my ASD which was almost 2cm. I had the clamshell/catheter closure procedure last friday and I have been recovering for the past week.

I had the surgeon tell me that I would feel fantastic and immensely improved within days. But that has not been the case. The week before my surgery I was completely out of energy and had trouble breathing just walking across the room.

Now a week after surgery I feel better but still impaired. My energy is weak, I get short of breath easily and I still feel "sick" in general.

How long after your ASD closure did you begin to feel better? If you had a closure in your 40s did you

ever feel like you fully recovered and got your old strength back?

Thanks for your help!

Jennifer

Had my ASD repaired with Amplatzer Septal Occluder 10/31/2013. Echocardiogram shows well plugged. Much bigger hole then was initial diagnosed. On Echo looks like large overcoat button. I have been sick for 20 years with most MD’s ignoring the heart problem and getting so, so many different diagnoses. My murmur was 1st heard in 1980 but the ASD was not found until a persistent technician performing an echocardiogram listed to my symptoms and found the hole. This year for the 2nd time I coughed uncontrollably for over 8 weeks and again broke ribs. for so many years I had ASD symptoms and may have other illnesses, but I know I am finally at 57 on the right track. I do not expect to immediately become better. I am taking each day slowly. some people say the immediately feel better and other don’t. If by 6 months you are not better, I would pursue the issue with my MD. Sorry for the errors, I am a horrible typist.

well I hope my reply provides some inspiration. I underwent the full open-heart process at age 49 to close a hole the size of a silver dollar and was easing back into work after 6 weeks of taking things easy, doing ritual walking and using my breathing "exerciser" regularly. My energy did wane quickly through the day as I did go back to work, but gradually got to full strength, and I did feel much better (and still do 2 years later) than I did before the surgery. My advice is to set your mind that this is a recovery process that may take some time, sitck to your doctor's advice, and expect to get tired easily for a while, knowing that it will get better.

Hi.
Sounds like a similar story to mine. I started fainting, dizziness, shortness of breath at age 36 and was finally diagnosed and had repair at age 37. I’m now 38 and 6 months post closure. I feel so much better! I still get tired and haven’t had the success at the gym that everyone else seems to have but I don’t faint anymore, the pressure off my chest is gone and i have more energy.
That being said, it wasn’t immediate. I remember the docs telling me i would instantly feel better… And I did feel better but still not 100%. I was frustrated. But after about 3 months post closure I did get a lot better and noticed more energy, less brain fog ect. My doc said it takes your body 3mnths to a year to heal (for the tissue ti grow iver the device) and there is a lot emotional stuff that goes along w the repair and I would get better as time went on. She was right.
But… It took them almost 2 years to find my little hole so I have little faith in our medical system… So if you don’t feel “right” keep asking and searching for an answer!
Hope you feel better!!! Not sure if you are on Facebook, but I’ve found a great community on there for ASD. It’s been helpful. Also the adult congenital association website.
Good luck!!! Hope you feel better!

Thanks for the replies. I am now 2 + months past my surgery. Some things have improved. I am almost back at work full time. I am averaging about 35 hours a week in the office. I am also now able to do more normal type activities like going to parties and events. I still tire easily and go to bed before my kids most evenings!

Tonight I start my Cardiac PT therapy - I am curious to see what they recommend for me.

I am trying to start exercising again but I still suffer from a "hangover" after I exercise. Sunday I managed to do a 2 mile walk - but on Monday I felt heavy pressure on my chest all day and had to take doses of advil because of the discomfort.

Did anyone else experience this when they began exercising?

My breathing has improved alot and I don't have much shortness of breath like I did - so I feel the closure surgery helped that.

Now I just hope the palpitations and chest pressure would go away too.

Wishing you all better health!

thanks for the replies - it is nice to know I am not alone in this battle :-)

I am now 4 weeks post op. An not enjoying the new symptoms I am feeling i.e; irregular heart rate, coldness, chest heaviness, just feeling weird and worse fatigue, but know it is related to my activity levels. I also suffer from increased symptoms including the above along with paleness and dizziness the more active I am. That wonderful hole in our atrium provided a shortcut for oxygenated blood that our bodies needed. For however many years our blood used that shortcut, once that the hole is plugged, the heart and lungs must send oxygenated blood now to the whole body. This is change and one can only expect a variety of symptoms as everything adjusts. I am learning to take one day at a time. I am listening to my body carefully. It took years to develop symptoms and I accept the fact that this new plug is a big change for my body. Gradually build up your exercise or activity so your body can adjust. We are all individuals that heal and tolerate things differently. Good luck to all of you!

Hi, my name is Laura and I am now 36 years old. I had OHS on December 17, 2012, but had severe complications with bleeding they had to go back into surgery the same day for a second open heart surgery. I had to have blood transfusions etc., I crashed the first night and the nurse team had to get me breathing and back on the ventilator. Afterwards, I had several cracked ribs. In total I was in the ICU for 17 days. Much of that time I was asleep. I was finally released to the main cardiac floor where I stayed for another week.

Istill feel a lot of pain daily. I also have awful back pain. I am starting physical therapy on May 1st. I hope it helps! The pain I feel daily is debilitating. It is encouraging to me to read other patients who are having good recoveries. Thanks



LLpeaches said:

Hi, my name is Laura and I am now 36 years old. I had OHS on December 17, 2012, but had severe complications with bleeding they had to go back into surgery the same day for a second open heart surgery. I had to have blood transfusions etc., I crashed the first night and the nurse team had to get me breathing and back on the ventilator. Afterwards, I had several cracked ribs. In total I was in the ICU for 17 days. Much of that time I was asleep. I was finally released to the main cardiac floor where I stayed for another week.

Istill feel a lot of pain daily. I also have awful back pain. I am starting physical therapy on May 1st. I hope it helps! The pain I feel daily is debilitating. It is encouraging to me to read other patients who are having good recoveries. Thanks

hi there i had open heart surgery in april 2014 ,i am struggling a bit i have shortness of breath and palpitations and i also have af which i have to take warfarin for , but my biggest problems are sevrere back pain sore feet sounds slly but my feet ache when i am walking never had any of this until had this operation hoping things get better soon lots love phillipa xxx

Hi Jennifer, i had mine closed exactly two weeks ago and as from the next day I was feeling hyper… Closure was Saturday morning and on Sunday I went to the zoo with my son and then on for shopping until late afternoon without feeling tired at all! I believe that psychological calmness and positive thinking play a HUGE role in recovery. I am 35 and had a 3cm secundum asd. Had no symptoms whatsoever other than getting tired quite easily which I actually never realised myself! Keep up the spirit and always report how you feel to your doctor. Get up and walk, go to the gym, swim and your energy will return soon.

Hope everything turns out just fine!

I had my ASD closure (2.8 cm) at the age of 28 in 2009. I fully recovered in 8 months with no more pain.

Hi Laura, this site is a good place for comforting you. If your Dr said you are fine, then you will be fine. Same case as me. I also have pain at the muscle around left chest when I get stressed but Dr. said this is due to stress. It will be gone after you do exercise. I am currently doing gym to stretch the muscle of chest and it really helps.



LLpeaches said:

Hi, my name is Laura and I am now 36 years old. I had OHS on December 17, 2012, but had severe complications with bleeding they had to go back into surgery the same day for a second open heart surgery. I had to have blood transfusions etc., I crashed the first night and the nurse team had to get me breathing and back on the ventilator. Afterwards, I had several cracked ribs. In total I was in the ICU for 17 days. Much of that time I was asleep. I was finally released to the main cardiac floor where I stayed for another week.

Istill feel a lot of pain daily. I also have awful back pain. I am starting physical therapy on May 1st. I hope it helps! The pain I feel daily is debilitating. It is encouraging to me to read other patients who are having good recoveries. Thanks

Agree!! Gym really helps.



Andreas said:

Hi Jennifer, i had mine closed exactly two weeks ago and as from the next day I was feeling hyper... Closure was Saturday morning and on Sunday I went to the zoo with my son and then on for shopping until late afternoon without feeling tired at all! I believe that psychological calmness and positive thinking play a HUGE role in recovery. I am 35 and had a 3cm secundum asd. Had no symptoms whatsoever other than getting tired quite easily which I actually never realised myself! Keep up the spirit and always report how you feel to your doctor. Get up and walk, go to the gym, swim and your energy will return soon.

Hope everything turns out just fine!