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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

PFO Closure in Miami

I feel like I need to share how very fortunate and grateful I am to have this man, Dr. Romeo Majano, as my Cardiologist.
My story - I had a TIA in February of 2016. After lots of inconclusive tests my Neurologist recommended a Bubble Study and found a large PFO with severe right to left shunt. I saw an Interventional Cardiologist who ordered a TEE showing a large defect. He recommended closure but despite our efforts, the insurance co. denied the procedure twice . I was treated with medicines and preventive care.
I saw him every 6 months for follow up. I had an appt. scheduled for November 2018. His office called and canceled the appt. and wanted to reschedule for late January. I explained that I was not feeling at all well, experiencing palpitations, angina and becoming breathless and lightheaded much more frequently. I felt that I shouldn’t wait so long to be seen. Even though this was a large group of Cardiologists, they could not schedule the Appt. any sooner. I felt like an unknown and insignificant patient in a too large medical factory.
I spoke to my niece, who is a critical care nurse, and she said NOT to wait. She gave me the name of her own Cardiologist.
The PA , Raquel was wonderful. She took my history and asked about symptoms I was experiencing at the time. After an examination, Dr. Majano ordered diagnostics. A Bubble Study, a stress test, and an echocardiogram that showed a large PFO/ septal defect. Dr. Majano personally took on the Big Bad Insurance Company and got the procedure to repair approved.
I first saw Dr. Majano on December 6th, 2018, and on December 21, he successfully repaired the defect by implanting an Amplatzer Septal Occluder percutaneously. I am so relieved to have had this repaired with this least invasive procedure. I cannot thank this Dr. and his staff enough. I am very happy to say I am feeling much better. So far so good :grin:

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So pleased to hear that you’re now sorted and found a great Doc.

Also very sad for you, that you had to wait so long & live with the uncertainty. It’s fab that you posted this, as it may give others hope & insight to persevere.

In the U.K., we are lucky to have the NHS National Health Svc, but that said, there are often very long waiting lists & resultant uncertainty.

I had a related experience. My employer’s medical insurance initially paid all my tests in 5 wks (echo, 7 day ecg, cardio MRI, repeat echo, angiogram) which was great, as after initial visit to Emergency, I think the NHS would have struggled to test anywhere near as fast (their 7 day ecg proposal was 8 wks out and starting on Christmas Eve, hardly a representation of normal living!)

But then insurance small-print kicked in, they did not cover congenital defects. I tried asking, why do you cover diseases that people can make worse by lifestyle (eg blocked arteries) but not a defect, and Doc tried to help, but no good.

Luckily the NHS saved me, although it was a lot longer wait than “private” would have been, & more uncertain timing. But I was still able to have my open heart surgery at the Royal Brompton in London, one of the Uk’s main cardio hospitals.

So maybe we have a similar message to share - persevere and get the help of great Docs, and even if there is a wait, it will be worthwhile. And if it’s proving hard, get input from everyone (your critical care friend, or a pal in the U.K. told me to try going back to Emergency to get admitted that way, if I couldn’t get a planned date!)

So glad you’re sorted & great post