I had my 19mm ASD closed with a 37mm Gore Cardioform device at UCLA by Dr. Aboulhosn in September of last year. As of about a week ago I have gotten my shortness of breath back although not quite as bad as before. I feel like I can’t get in a deep breath and sigh a lot throughout the day. Also some upper back pain and small pains in the chest. My pulse ox blood oxygen percentage hovers between 94-97% and I can’t tell if that’s normal or not.
Apparently they said the device was well seated and post-op echo showed no residual shunting as well as 10 days later. I just feel like maybe my lungs are filling with blood (from a shunt like I had earlier) and causing me to need to take in deep breaths as I had before.
Ugh, I don’t know. I am trying to get my follow up at UCLA pushed to a closer time but they have been gone for the holidays.
Does anyone here know of any scenario where the Cardioform device may somehow fail three months after closure? I know that sometimes devices embolize shortly after closure but I haven’t read anywhere in any literature of an embolization months after closure, or a residual shunting cropping up at the 6-month follow up.
@gillytech I am sorry to hear this. I remember you joined our community before you had the closure done (you hadn’t even been diagnosed at that point). I recall you having some PVC’s, and I hope that has gotten better.
Regarding you concern, I understand that your 10-day follow up showed good signs, but it must be unsettling to have to undergo shortness of breath now. Are your oxygen levels still around 94-97%? How have your symptoms been over the last 9 days @gillytech ? I really hope you are able to get that follow-up pushed up, and if not, you are still able to get the care you need!
Keep us posted,
@gillytech , were you able to get a follow up at UCLA?
Hey @Lead.Intern thanks for the follow up. I was kind of able to get a follow up. I decided not to come in early and instead keep my end-of-March appointment. My symptoms got better with better diet as a matter of fact. I was able to get one of the doctors that helped with my procedure on the phone and he told me that I didn’t actually have PH before the procedure. They measured my pulmonary pressure while installing the device.
Regardless, I did get a 7-day heart monitor (Brady CAM) and found that I had a few PVCs and several thousand PACs. This symptom comes and goes and I think overall is getting better. I also had one 30-second AFib episode.
Instead of from a cardiac etiology, I am suspecting my lung symptoms are coming from hiatal hernia syndrome, where my stomach has been pushing up against my diaphragm. I have been doing a program to heal my gut (two infections were detected with a GI-MAP) and reduce inflammation in my abdomen which is causing my stomach to press up against my diaphragm. It’s a somewhat novel approach but it seems to be working.
Meanwhile I have managed to reduce my metoprolol dosage to just 6.25mg per day. I am hoping to get completely off of it within a month.
Great to hear @gillytech ! I had no clue about your gut, and am very glad that you have figured out something that works. Really seems like things are turning out better for you, which is awesome.
Take good care,
Hey @Lead.Intern Yeah it’s really been a journey. It takes patience and an open mind, that’s for sure.
So I have my 6-month follow up visit at UCLA at the end of March. So hopefully everything looks good with the echo and I can continue my wellness journey without too much scary stuff happening
I’ll post the outcome on here so people can have an idea of what to expect after the 6-month mark. I had a pretty well enlarged right atrium. Hoping to see some measurable reduction in size there!
That’s really nice of you to do. You have no idea how much your updates will help those visiting our community in the future! Wishing you the very best for your follow up @gillytech, looking forward to hearing from you soon.
For further discussion, please check out my original post as this one is a bit of a tangent…