Hello, I am in the hospital tonight after a close to three hour heart cath. The intention was to visualize the ASD and make a plan but unfortunately they couldn’t find it. I’m at a loss and discouraged as the TEE showed a large one. The Dr wants to sift through the data collected and do another trans thoracic Echo in the morning. I thought this would be the end of a long road. Will keep you posted. Please reply if you have ever had any thing similar happen.
I haven't had the same thing happen but I understand your frustration. Are you happy with your Doc?
Is there any chance you can get a second opinion? I saw multiple docs before and after my repair and let me tell you they are all different. If he saw a hole and your TEE and then didn't on your Cath procedure I would be upset.
It is not fun to do multiple TEEs!!!
I hope you are doing well and you get more answers soon.
Sending good vibes your way!
Jennifer
Hi David, read your post. Something doesn’t make sense. You are at university hospital with great care. How could heart cath not show what TEE showed? Are they done by same doctor? You need oxygen because of low saturations correct? What results did cath show other then they couldn’t find defect? I had an atrial septal aneurysm by TEE and they already knew I had small ostium secundum. That is a hole in the atrium in the center of the wall. During heart cath that was done with plug they did find my hole was 2 times size they thought and had seen on TEE. Hope they figure out what is going with you, please keep us posted, Linda
Could it be a PFO?? my niece had one which would close and everything looked normal until it opened by pure chance during a third scan!!
I was discharged a little bit ago. Having horrible chest pain but they don’t seem concerned. The doctors are all going to meet and look over the data. They did say today there actually was an ASD. They said it was 2mm and was not big enough to warrant closure. If nothing else is showing it seems like it would be worth fixing but I’m not too familiar with sizes of them yet. They also said the pulmonary pressures were systolic 47 and mean of 30- which was high but they can not decide if it is pulmonary hypertension. I guess I will wait to see what they come up with but I have a back up plan to see a dr at Cleveland in December if needed. Thanks for all your thoughts so far and any more you have to give! I’ve been so miserable and tired and thought this was the end of it all. Thanks everyone!
Hi David,
You are symptomatic! Your pressures are not good. They can close PFOs and ASDs even if small. Patient symptoms mean more then size! Where is the hole? Are you having repeat TEE tomorrow? Did heart cath surgeon do original TEE? The only time they don’t close the hole if the lungs need the hole kind of like a pressure valve and that maybe what they are looking at. Chest pain always there? Please keep us posted. When in December? Cleveland heart clinic? You are going to drive if you go to Cleveland? Keep oxygen on. Thanks, Linda
HI David, I had a similar problem low O2 levels as low as 60 and high Co2 levels, I was also on oxygen, until my sister did some research and discovered I had severe sleep apnea. I was seeing the finest doctors on the planet as far as congenital heart defects go. Look up Boston Children's Hospital they are rated number one in CHD. I had pulmonary pressures that were in the 80s and had to be hospitalized in ICU. Two years later and after having a bipap machine at home and open heart surgery, I have normal pulmonary pressures and oxygen levels. I am walking two to three miles a day, doing yoga and qi-gong. I also want to say that I had been going to a cardiologist for 20 years for irregular heart rate b/4 anyone ever noticed the hole in my heart. It took and Cardiac MRI to see it. I hope this helps
Wow Edian, you’ve been through a lot. I do have severe sleep apnea but have been on CPAP for years. They say it’s under control now but I still wonder if it plays a roll. Interesting about cardiac mri as one dr mentioned it but the others said no. I was doing qi-gong and miss it now. So glad you are doing well.
Linda, the heart surgeon did not do the TEE- wonder if that does make a difference? It is the Cleveland Heart Clinic. We would drive and bring plenty of oxygen. I can get into Barnes Jewish Hospital next week and they want to do a TEE there right away. I’m not sure if it’s appropriate to ask, but any ideas between Barnes and Cleveland? Boston will be too far for me. Thanks everyone!!!
David, if i were to give any advice, I would say go to a hospital that has an Adult Congenital Heart Center. Cleveland Clinic has one and I think it's run by Dr. Richard Krasuski, they are experts in the field. After treating me for 20 years, my regular cardiologist admitted to me that congenital heart disease was out of his league, . Once at Boston childrens the echo technician confirmed what was on the MRI, I had a sinus venosus atrial septal defect, and he was surprised that it was never detected after having at least 15 echos with the other Cardiologist, but he deals with acquired heart disease. Good luck and please let us know how things work out for you.