Sometimes when you speak the truth it can get you in trouble. Let me explain. I’ve been digging a little deeper lately trying to get some answers to the ongoing question of PFO, septal occluders and exercise. Completely for my own benefit of course, but if you have been following my posts you know I am not the only stroke survivor with a septal occluder patent that is googling for help. Let’s just say for now, I am thinking of boosting my exercise level and need to know if it still “OK” especially with recent rumblings of device erosion. Anyway, you may be thinking I shouldn’t need to google for help, right?
The answer as it turns out is not that easy. I have this patient identification card that identifies me as an official recipient of a septal occluder married now to my ticker. With my card I received a one page letter that states “Dear Recipient:” (that’s me)
Enclosed please find your xxxxxx Occluder implant registration card. Please keep this card with you at all times. This card will notify medical staff of your implant in case of medical emergency, and provides a contact number for us to reach you in case additional information might be needed for your care. Below are some commonly asked questions about your device:
(skipping to the part on exercise or as close to the part that mentions any physical activity guidelines)
Q: What activities should be avoided after my procedure? When can they resume?
A: All strenuous activity should be avoided for one month after the procedure. Even though you may feel ready to resume your normal activity, you should take it easy for at least one month.
I needed more information so I called the toll free number on my PFO Patient Identification Card. What I quickly learned was “they (the device manufacturer) don’t set the guidelines, they just make the device”. I would need to “speak with my physician who implanted the device”. Honestly, I am not feeling comforted by the device support line these days especially after reading more about PFO device erosion. I am suppose to feel better after speaking with my physician and having a long discussion about erosion that I have a “good” device. Frankly, I don’t know what that really means because there is clearly an accountability problem that needs to be addressed.
Bray Patrick Lake of the PFO Research Foundation posted a great article on better accountability in this industry. I hope we figure this thing out soon, I don’t want to get a call “in case any additional information is needed for my care” just because I want to be more active. I’ll tell you soon how this truth might be getting me in trouble, but for now one thing is for sure we need to do better than a fish tank warranty when it comes to device regulation and monitoring.
David P. Dansereau for know-stroke.org