When the phone rang and read Dartmouth I knew it must have been my surgeon with the pathology results. He had told us, while I was still hospitalized after surgery, that the mass removed looked clot-like, nothing he had seen before. He said it was bigger than they thought, golf ball sized and hardened to the point where surgical removal would have been the only choice. He also said that he was glad we did not take the watchful approach and wait to see what happened with the believed Myxoma. I opted for the surgery right away due to medical insurance reasons, but it ended up being a blessing in disguise because the mass 'did not need to be much bigger to completely block blood flow' he said. If it broke off I would have been a sudden death case where autopsy would be the only answer to my cause of death. Over the phone he confirmed his previous suspicions. A large and hardened clot, also known as a thrombosis, was removed from my right atrium with no explanation for how it organized itself on the wall inside of the heart, or how long it had been collecting and growing in size. The report calls it a mural thrombus meaning clot attached to the heart, and describes it with muscle fibers and tissue encapsulating the hardened structure. The best idea for a cause was the tip of the port catheter that sat right beside the mass in my right atrium. Never had my surgeon seen this before, and still we are not sure of the cause. The surgeon recommended that once I am fully recovered we test for blood disorders and clotting disorders that could be a more genetic explanation. The bacterial and fungal cultures were all negative, and I became quite the mystery to many in the hospital who do not see young girls in the cardiac ward for open heart surgery often. Later on, a nurse informed me that in her 17 years of working in the cardiac wing of Dartmouth she has only ever seen two patients for cardiac tumor removal, and never one for my mysterious diagnosis. I was lucky to be alive, that in the month up to surgery the blockage did not release and reek havoc on my body. The possibility of the port causing all the pain with the surgery, put me in an anxious spiral, and immediately after hanging up the phone I got quiet. I was frustrated for this possibility, and I wanted nothing more than for the port to be removed immediately. "This is coming out tomorrow, if it can" I cried to my mother. Yet again everything I had been through wrapped right back around to Tick Borne Infections. My mind swelled with these realizations and my heart felt as if it could pop. Little did I know, that terrible feeling that developed was something much worse in the making, and within a few minutes my world would turn upside down.
IVIG Round 2 – #WPIW
3 hours ago