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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

More issues

Feeling down this week.

I have had ASD since March. Initially after surgery, I had more energy and was breathing better.

As of Labor Day week I began to have breathing issues. My UCLA Pulmonologist retired (left UCLA) in July. I have been seeing a new pulmonologist in Vegas (home town). I am back on continuous flow oxygen full time again.

He just got all records from UCLA and he saw a foot note about a vein in my lung not working right. He wants a VQ scan to check for tumor, blockage, or leak. The insurance company denied it.

It sickens me that insurance companies have this much control and can delay treatment till we can’t function anymore.

I feel like I can’t disappoint my family by struggling again. My brain is foggy again, I can’t remember conversation, it is a struggle to get up, I am gaining fluid weight again. I am very afraid the TIAs are going to start again. I am only 46 … life is not supposed to be this way.

Sorry… just venting.