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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Amplatzer Failure and nearly died

I had an amplatzer device implanted in Aug. 2017 laproscopically. It did well for a year, then due to another surgery and extreme retching, it was knocked loose. On Nov. 11, 2018 I suddenly experienced extreme vertigo and passed out. Oxygen was down to only 77 and right ventricle had collapsed. Was rushed to a large hospital specializing in heart issues and had emergency surgery with a pericardial window to drain blood from my heart in wee hours of Nov. 12. It saved my life. Was in ICU for 8 days, plus two more in hospital. Came home for 2 weeks to build strength before going back for open heart surgery. They removed the amplatzer device and put in a permanent bovine patch. Am recovering and grateful to have lived through it all. Many miracles led to life saving events.

I found a You Tube video of another woman who had an amplatzer device for 9 years before it caused a problem and had to be removed as well. Before you agree to have one placed into your ASD, question whether an amplatzer is advisable and worth any risks involved. I simply accepted it and never questioned it … should have.

Hi Gail

That sounds terrifying… Glad to hear you pulled through and had the Amplatzer removed.

Did the cardiologist believe the Amplatzer had eroded through into aorta? Or did the Amplatzer displace out?

I had an Amplatzer ASD occluder as well inserted in 2017, and the risk of erosion, even though it is supposed to be low, has always worried me. The erosion is likely to happen early on but can happen even 10 years down the road in some cases. Statistics say that erosion is very unlikely to happen, but when it does, it is catastrophic and for the person experiencing it, like yourself, it is 100% happening.

Wow! It’s good that you received care promptly and that things turned out alright.

I also had an ASD failure and almost died. The implant was put into my heart November 2011 by catheter and failed by May of 2012. I had developed a horrible cough which they think moved the Amplatzer occluder. It cut a whole In My heart and cut an artery in the atrial arch. My pericardium filled with blood and crushed my heart. Was flighted to the major medical center where the occluder was implanted. A cardiologist did open heart surgery to remove it, sewed in a patch instead. They left a bleeder so I was opened twice. Long recovery! Took a long time for pericardium to heal and for them to find meds that would work for me. Ended up in ED many times with chest pain and complications. I still experience chest pain when I overdo it do to stretching of the scar tissue in heart and chest. At that time I was number 97 in the world with an occluder failure and part of FDA investigation. The occluder was not defective but may have been too large for the hole or too close to the atrial arch. I was so very fortunate not to have had a stroke. Some people stroke and then the ASD is found. Mine was found at age 57 after being ignored for years with chest pain and offered anti anxiety meds. Wish I had had this surgery when I was younger. My chest did not feel right for months before I collapsed on my kitchen floor. I was able to call 911 before passing out.

I can advise anyone to keep bugging your doctor and don’t give up. I am disabled at this time but am able to enjoy those I love. TechGirl

Such a scary experience you have gone through. I hope that with time you will recover more.

For those of us who have had Amplatzer ASD devices implanted, we need to advocate for transparent reporting of all side effects. There should be a registry of all patients who have an ASD device implanted. They should be followed up long term and the registry informed and updated with minor and major side effects. The registry should be open for us to look at (of course with confidentiality maintained). What happens now is that we depend on knowledge drawn from studies who are sponsored by the company or have only a limited population of patients within a shorter defined time, realizing that complications can happen in the long run and may be under reported.

We really need a registry for Amplatzer ASD device implants that is maintained for North American patients to start off with (or other parts of the world) so that we can really understand the long term effects.

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Agreed. I, like many, had several post surgical complications. Everytime I had hours of bad chest pain I was worried my device was moving. I was looked at as crazy for showing up to the ER so much even though I had terrible chest pain & severe shortness of breath. It was so frustrating that there was nowhere (other than here) to find if my symptoms were normal or not and I was often brushed off. After having heart surgery we are in a scary unknown place, and having a registry and information about post surgical complications or side effects would be extremely helpful. I would have thought that after our surgeries the manufacturer or cardiologists that created the devices would have had multiple phone follow ups with us just to gather information. Which I think we would all be happy to give. But there is no follow up no nothing, it’s very sad to go through such an extreme surgery where most of us were on the way to death, just to be discharged and never thought about by anyone ever again.

This is scary! I had my surgery in March and still get irregular heart beats and chest pain. My main artery spasms (found during PFO surgery) and when I tell them I have chest pains, I am told to breath through it and to lose weight. I used to run 206, but what initially trigger me being sent to cardiologist was sudden onset edema. I gained 20lbs in 15 days in fluid retention. Right after surgery, I fluctuated 14lbs in a day… but since I started struggling again to maintain 02, severe chest pains over Labor Day week to know, I am gaining weight again in fluid. I am on 2 water pills 2x a day and only pee 2 times a day.