Five years ago I had a mini stroke which led to the discovery of my PFO (Patent Foramen Ovalae or hole in the heart), and eventually to the discovery of my heart failure.
I had the PFO fixed and how that works is they place a plug much like a small double umbrella in the hole which covers both sides. Eventually, theoretically the hear grows tissue over the plug and the hole is sealed after a few weeks or months.
Mine apparently never sealed properly and there is a leak. How much of a leak is up for debate. The at rest echocardiogram shows an insignificant leak, in other words, not enough of a shunt (unoxygenated blood mixing with oxygenated) to cause an issue.
However the theory is that due to results of my six minute walk and my recent PFTs, my lung function and blood oxygenation at stress is not adequate. Long story short is there is a theory that the hole has expanded due to the combination of scarred lungs, pulmonary hypertension and heart failure. In other words the original hole was say 3mm, the umbrellas they put in were 4mm and not the hole is just under 4mm and the heart tissue never fully grew over the plug.
This poses a major problem if true. Not only will there be major shunting, but the hole will continue to get bigger because of the shunting – a vicious cycle. That means the hole will expand to larger than the plug eventually, which means the plug could get lose and drift off and plug somewhere it is not supposed to. And that means, well, you know what that means.
So my sarcoidosis specialist is consulting with the heart specialist that did the repair to see what, of anything, can be done. Do I just live with the leak and hope for the best, or do try go in and remove the plug and replace it with a new one. Removing the plug is a very risky surgery in of itself, but also what has to be taken into consideration is that I have leads going into the heart muscle from the defibrillator. What a mess.
But there is no point worrying about it until it is time to worry about it. So I wait to ear what the heart surgeon says and then take it from there. Until then, I’ll just continue to live life and use my oxygen as much as I possibly can.
Update: The hole eventually fixed itself. Heart tissue eventually grew over the plug and sealed the hole. It took five and a half years longer than was expected.