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

Complicated ASD & PFO in Athlete: Seeking opinions in this difficult time

Hi everyone.

I’m 25 years old and before December 2019, I was a professional competitive cyclist. I was just about to compete in the National Championships when I was diagnosed with (after countless tests and scans) a PFO, complicated fenestrated ASD and an aneurysmal septum. The shunt is around 50%. This has caused marked right ventricular enlargement and the cardiologist said undetected, I would have been in heart failure within 10 years.

I am super happy we found this due to that, but still doesn’t change the fact that it sucks. I have had to give up my place on the team and now I’m in limbo. I am having my final appointment with this cardiologist in a week or so to decide OHS vs. amplatzer device - they think they may be able to close most (not all) of the holes with a device.

With COVID-19, it’s unlikely to happen soon, but I was just hoping to share my experience a little bit and seek others opinions. It’s obviously easily to feel alone in all this.

Hey there, former runner here… feel free to pm if you wanna vent… my story will make you feel better bout your life lol!! Stay strong!!

This must be a really frustrating time, not knowing how soon you can have your procedure. But it is really great that they found the issue as early as they did, and that’s something to truly be thankful for. My PFO/ASD closure was done almost two years ago with an Amplatzer Septal Occluder. My experience was a very mixed bag; I was later told it successfully closed the shunt, but I am very allergic to the device. I had numerous conversations with the cardiologist about my metals allergies beforehand (I’ve never been able to wear metal jewelry my entire life without getting a rash from it), but the cardiologist was always totally dismissive of this, saying the device has a “proprietary coating” which eliminates all metal to skin contact and therefore it wouldn’t cause an allergic reaction. Immediately after implantation I began having a severe systemic allergic reaction to the device which completely eliminated the quick recovery time I’d been promised. The severe allergic reaction was immediately brought to the cardiologist’s attention and he immediately quit my case, leaving me to scramble to find a new cardiologist who could work to figure out what to do. It took a lot of online research for me to find a specialist (someone others with the same problem had described in this forum) who was familiar with this problem and could provide some guidance for how to treat my situation, what to expect, etc. If I had it to do all over again, I would have opted for OHS, which was never even presented as an option. If I had no metals allergies at all, I imagine the ASO device may have worked out fine for me, but the bottom line is ALWAYS find out if you have any metals allergies before ANY device implantation. My testing performed post implantation was a traditional skin patch metals allergies test (you have a small panel of various metals particles taped to an inconspicuous part of the body to see how your skin reacts after several days), followed by a metals allergies blood test to determine to both the amount of metals (nickel and titanium) that were eluting into my bloodstream, and my system’s reaction to them. If you go with the ASO device option, PLEASE have thorough metals allergies testing prior to the procedure, and know that YES, the device does elute both nickel and titanium particles into the bloodstream. Here’s a short NIH article on the subject:

I was told by multiple cardiologists that due to my device being large (25mm), I was better off trying to manage the allergic reaction than to undergo explant OHS. I wish you all the best in your decision. If you go with the ASO device, please do as much research as possible on the device and its problems before you commit to the procedure so that you know its history.

Thanks for you’re advice !
It’s reassuring to know that people have been through this before… it’s scary to hear about your metal allergy however - I’ll definitely raise the question. I’ve never had any metal allergies before but this is not something you want to risk.