Hi everyone,
I wanted to let everyone know a little of my story in the hope that it might help someone else in the future. It’s a long story but I will just give the highlights. About 6 months ago I started having chest pain and a slight cough. I underwent multiple tests and hospitalization and the only consistent finding was hypoxemia. I have been all around the Midwest to various hospitals and teaching centers. Everyone would think they had an answer but again could only find low oxygen levels. The past 3 months I have been on oxygen 24 hours a day. I am 42. The only new finding was borderline pulmonary hypertension and a small PFO and ASD. In fact I recently discovered one of the previous major medical hospitals had dismissed the small PFO and ASD and not even put it in their notes. It was seen later on their films. This past week I went back there to be seen by the sleep medicine doctor. I have been on a CPAP for 12 years and they thought I should be rechecked. Luckily, that Dr said first he wanted their cardiologist to reevaluate things and check the pulmonary hypertension while exercising. It ends up those values were normal but they also found I have platypnea-deorthodeoxia where I get increased right to left shunting when standing. They also found an extremely long PFO tunnel and a chiari network in the heart. They believed all of these together were increasing the shunting of blood- even though it was a small (3mm) PFO and 3 mm ASD. They placed a Gore Helex device (25mm) and I almost immediately improved. I am now off oxygen for the most part. When I can start exercising I may still need it for awhile until I get full closure of the holes they said. I feel like I am getting my life back. I think we sometimes need to be our own advocate when it comes to our health. It’s tiring but I had to keep after the Drs to take this seriously. They just kept saying try another few months on oxygen. I understand not all ASD’s should be closed but I hope Drs start to realize it may be worth trying when all else has been done or tried. Good luck to everyone who is or has been struggling with health issues and give thanks also to any form of support that you have. And thank you for this group!