It’s a long story but I was born with. 1 in a million heart birth defect. It’s because of the defect that causes difficulties scheduling any decisions for a procedure or taking any medications. My PCP, Neurologist and Oncologist were worried about severe pain in my entire brain. Since my 39yo sister died from a rare brain tumor, all three doctors agreed, they needed MRI’s done. Sounds simple right? Not with a $25,000 loop recorder under my left breast that could be ripped out of my chest by the machine. Hold on the hospital says, we need special instructions from the manufacturer, From there it went downhill in a hurry. Lets just say, it took almost 2 months to get all the paperwork done, all the T’s crossed, all the I’s dotted. Then came the scheduling, oh no, another month goes by, people are switching time slots just to fit me in.

The night before the procedure, they’re calling me to make sure I’m coming, yes I replied. One major problem, the day before, I was sitting next to a friend for two hours talking. I wear a good quality mask since I have an almost nonexistent immune system, my friend did not have one on. The morning of the tests, I wake up with a fever of 102.7 at 4am. Not knowing what I had, at 6am I canceled multiple appointments.

To your question, I have a special heart problem that 4 doctors must agree on any procedure or treatment can occur, my Oncologist is one of them. With my heart defect being so rare, 1 in a million, they want to keep me alive to do the procedure to repair it. Since any treatment my Oncologist could try on me could kill me because of the defect. It took almost 3 months just to get an MRI scheduled, imagine being only 1 of only roughly 350 people in the whole United States with this defect. Nothing is going in or out of this body without all 4 doctors in agreement. At present, a geneticist is being added to the list soon. Oh well, such is life!!!