- CASE FILE
Marfans Open Heart Surgery Turns into Pulmonary Fibrosis
ABOUT THIS CASE FILE
In Dec. 2017 1 week prior to my open heart surgery, I was diagnosed with Marfans Syndrome, which was the cause for my heart issues. I had a successful surgery which replaced a leaking heart valve and repaired an aneurism. About 2- 3 months after surgery, I became out of breath and exhausted just going from my bedroom to the kitchen. When this did not get better, I consulted both my pulmonary specialist, cardiologist and heart surgeon. After much testing, the diagnosis was pulmonary fibrosis. Both the surgeon and my pulmonary specialist spoke and believe it happened from the surgery, maybe from a medication but not sure. I did not have pulmonary fibrosis going into the surgery, but came out with only 33% lung capacity. I am told there is nothing to be done.
July 2019, I now have another leaking heart valve and am told by my cardiologist I will need another open heart surgery, however, my pulmonologist says my lungs will not make it through. I am not convinced that there is nothing that can be done and the mystery is what really happened to my lungs and can there be something done to save my life? I am seeking help because this has not only impacted my quality of life, but possibly the ending of my life. I am now disabled and unable to work. I am a single mom with middle school son and a high school daughter, I have limited energy which I spend raising them (my 70 year old mother helps thank God) and limited resources to find out what is really going on.