The heat from the Miami sun warmed my face as it shone through the windshield. It was the type of day that makes living in South Florida worth the six months of hurricane season. My first November living in Miami, I had just moved from Ohio for a job at a university in July and had survived three near hits by hurricanes Francis, Ivan, and Jeanne…and my first deep vein thrombosis.
During Hurricane Francis I developed a severe case of cellulitis in my legs. A frequent complication of my Lymphedema. Thankfully, I had already established myself with a Lymphedema specialist in Miami and he arranged for my direct admission to the hospital for intravenous antibiotics. As usual, an ultrasound of my legs was ordered to check for blood clots, since the symptoms of cellulitis and blood clots are similar.
“No venous flow.”
I heard the tech say into the microphone. Of course she was not allowed to tell me the results, but I clearly heard what she said and “no venous flow” obviously meant I had a blood clot in my leg.
I spent ten days in the hospital on both IV antibiotics and IV heparin, as I had both cellulitis and a deep vein thrombosis (DVT) in the popliteal vein of my left leg. I had moved to Miami completely on my own, all my family and friends were in Ohio. I spent my 27th birthday in the hospital. An online friend whom I knew from ObesityHelp came to visit me and brought me some goodies to help brighten my stay. A central line needed to be placed since I needed two separate IV lines and have very poor veins for IV access. The doctor was unable to insert the central line, so I was taken to radiology for image guided insertion.
“Oh, that’s not suppose to go that way”, is not something you want to hear during any medical procedure.
“I’m awake, is everything ok?”, I gently ask from under the drape.
“Oh yes, everything is fine you just have some abnormal anatomy, but it’s nothing to worry about, we’re going to sketch it out though to show others.”
Turns out I have a persistent left, absent right superior vena cava (SVC). Meaning instead of having two branches of SVC entering my heart, I only have one. I was assured it had no medical significance, as it did not affect the function of my heart it was just a rare anatomical abnormality. (As if I need more proof that I was abnormal)
Upon discharge from the hospital I was put on Coumadin and was to follow up with the general physician who had monitored my care in the hospital. I had yet to establish a primary care physician in Miami, I had an appointment, but ironically I was in the hospital that day so I cancelled. Figuring it was best to stay with the doctor who had seen me in the hospital, I let him handle my care for a very short month. During my first visit with him he said he thought he heard a murmur in my heart and ordered an echocardiogram. I had the echo done in his office and yet at my next visit he had not reviewed the results. He also made some comment about me “only losing one pound” since my last visit. I had learned before to advocate for myself, so I promptly went to the doctor with whom I had originally selected to be my PCP. And am very thankful I did, as she saved my life.
That sunny November morning, I was headed to an occupational therapy appointment for manual lymph massage (MLD) and compression wrapping to treat my Lymphedema. I was on Coumadin and had been cleared to restart my compression therapy on my legs. I had early appointments three days a week before I went to work. That morning was just like every other morning. I merged onto I-95, and quickly moved into the middle lane so I would be on the correct side when the interstate split; it was early enough to avoid rush hour traffic. As I was driving along enjoying the beautiful Miami skyline, I felt the left side of my face tingle a bit and go numb. The numbness spread down my entire cheek. I thought it was odd but I not was not concerned. I felt fine otherwise.
During the course of conversation with my Occupational Therapists, it took two people to wrap my legs, I mentioned “funny thing, my face when numb while I was driving here…”. Both OTs stopped what they were doing, looked at each other, and then looked at me.
“Are you ok?”, one asked.
“Yes, I’m fine.”
“Are you sure you are ok to drive to work?”
“Promise me you’ll call your doctor as soon as you get to work.”
“Ok, I promise.”
When I got to work the first person I called was the campus nurse who had given me a flu shot the day before; maybe it was a reaction as it was the first time I had ever gotten a flu shot? The nurse assured me the flu shot should not have made my face go numb, and also strongly urged me to call my PCP. Ok, I get the hint, call the doctor. However, my PCP was not in the office that day; her office partner took the call and advised me that since I was already on Coumadin and “too young for a stroke” I was probably ok, but if the numbness spread, or did not resolve by that evening I should go to the ER.
So with that the issue was forgotten. Until a couple months later I woke up but my right arm did not. It was more than just having slept on it wrong. An hour had passed and my arm was still tingling and felt like it was asleep, my right hand was also noticeable bluer than my left. I was scared and I immediately called my PCP, and she had me come into see her right away. She was dumbfounded by the symptoms, but she is not the type of doctor to be dismissive, so she sent me for a cat scan of my brain. Her office quickly called and made the arrangements and I headed over to the hospital for the CT scan, then I went to work.
A few hours later my PCP called and told me there was evidence of a “tiny lacunar infarct in my right basal ganglia” and that she had a call into a neurologist and I might need to be admitted for observation. This discovery in the right side of my brain was not relate to the symptoms of my right arm though, since the right brain affects the left side of the body and vice versa. She said she would call me back when she heard from the neurologist, but advised me not to worry.
I have to laugh because at this point my PCP had no idea of what type of patient I was and she tried to use these scientific terms probably hoping I would not get worried. Of course, being the patient that I am, I wrote down the exact terms she gave me, but before I could look them up on the Internet I called my mom, who is a nurse. I read the words off to my mom and she immediately replied “infarct, that’s a stroke.”
“No, mom the doctor did not say anything about a stroke.” But yes in fact, infarct is a term for stroke.
My PCP called back within the hour and said the neurologist advised I did not need to be admitted as the infarct was most likely old and could have occurred at anytime, especially due to my obesity. (Thanks!) He advised to follow up with a neurologist but that it was not an urgent matter.
Whew. Relief, or so I thought….
…to be continued. (Spoiler alert, I’m still ALIVE)