Personal Stories: Nancy Smith
I believe I experienced an aortic dissection 3 years ago, as the result of a biopsy that hit a blood vessel, with subsequent hemorrhage and massive transfusions, pleural effusions, heart enlargement, etc.
However, I was incorrectly diagnosed with kidney cancer and given 3 days to 3 months to live, and shipped to another hospital. These two weeks were hell. Somehow I knew this abrupt intense searing pain which came after the biopsy and before the hemorrhage, etc. was NOT cancer. I already had a hematoma from a prior surgery (hysterectomy), which resulted in a mass finally “organizing” 6 months later. It was THIS mass that was biopsied and ANOTHER blood vessel caused ANOTHER big bleed….THIS biopsy was MISDIAGNOSED… Ugh. I sound like such a nut. It seems so simple, and yet the doctors staring at me in what appears to be utter cluelessness, doesn’t help. While I am naturally glad I never had cancer, what happened??? I haven’t been “right” since. I believe in being responsible, taking care of myself however I can, and solving things, at least preventing a re occurrence. Due to a casual indifference from the doctors, I am now seeking information directly from others that I may, like yourself. Up until this past November, I had an increasing, SOB that was Misdiagnosed as TR failure. Unbelievable. Helping my sister with a new baby this summer, my mother took me to her pulmonary doctor. I had only $50 and he asked to see my last scan of my heart/chest and he did some preliminary or basic lung function breathing test. He ordered an x-ray of my heart, and then upgraded it to a chest-x-ray CAT with contrast. As Medicaid would not pay, my mother had me request Catholic Charities, who did help. Okay. Sorry I tend to be wordy. I have had PTSD around this nightmare, and my ADD has been so much worse since this time (my hematocrit went far too low during this time of bleeding) This Cat scan showing an “eclastic process of ascending thoracic aorta of 4.5 cm with fluid anterior to pulmonary window” This was put in a highlighted fashion, and my mom’s doctor said to get back to Vermont right away to the treating cardiologist. Back in Vermont, I got “blown off” again, told it is only my (increasing) anxiety. I asked for another opinion, the doctor diagnosed a heart murmur, and said come back in 3 years. But this cat scan gets ignored. With rhetoric, not another test. Also, the first cardiologist did an ex cerise stress test with radio-active substance, and determined that while exercising, my FE went to forty-something, and my risk of CAD went up to a high-percent (I don’t recall) due to a “transient perfusion defect in the apex of the heart.” Naturally, all I got was yelled out for daring to look at my own records. I am tired, still don’t feel right, am out-of-breath from moderate activity (not like I used to be), I have periods of laryngitis and difficulty swallowing which I have learned can be from an aorta if widening can press on another blood vessel and nerves going into the pharynx and epiglottis area, etc. This was a problem SINCE I left the hospital from the episode I wrote about above. For an entire year and 1/2 I am told this too is ONLY anxiety. Upon a recent swallowing study, the difficulty is documented as real, and I am scheduled for a neurology visit in 2 months. A neurologist will not consider aorta difficulty. Thank you for listening. I guess I wanted to speak with someone, yourself, who might be able to relate, and to ask you if you have ever heard of a problem with the aorta being caused from a biopsy (I believe it hit the branch of the aorta where the aorta divides in the lower abdomen) AND if it is at all possible to have it go undiagnosed for 3 years. Also, do you think it is conceivable that an identified “4.5 cm ectastic area with surrounding pericardial fluid” should warrant a true 2nd opinion? I am beginning to hate myself, I just do not want to be a hypochondriac or to remain on a futile, warrantless goose chase. I am prepared to sell my home, to get some money for a proper check-up or referral out of this network. I just turned 47 years old. It has been 3 l/2 years of problems SINCE this time. It has NEVER been “just anxiety.” Brian, please forgive me for rambling. I am going to send this off now. Thank you. Nancy Gallucci Vermont
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