June 16 the day I lost part of my mind and part of my heart. June 16 1990, I lost part of my brain… June 16 1995 I lost part of my heart… Dates are funny things, they fly by without a thought or they stop you in your tracks and make you think back. When significant things happen on the same day 5 years apart it doubles the meaning of the day and when those events are not happy ones, well those days stop you cold.
June 16, 1990 –
It was just shy of a month since our wedding and Adam and I had friends over for a BBQ on the 15th. Lisa, George, Julie and Walt came over and we played volleyball in the back yard, cooked on the grill and had a few drinks – it was a perfect summer day. A few weeks earlier I had had some emergency dental work done a few days before my wedding and had not thought of it much since. While on our Honeymoon, I had experienced numbness in my left hand and thought I had pinched a nerve when I fell asleep on the plane. A week before I had numbness in my left hand while driving and thought it was strange – it went away so I did not think of it anymore.
While playing volleyball someone got aggressive and the ball hit me in the head, I remember thinking… something feels WRONG. I did not want to ruin a beautiful day so I kept quiet about these new strange sensations, my entire left side had numb spots and my vision had changed… I could not see very well out of my left eye – It was as if someone cut off my vision and there was no peripheral vision at all, it was very strange. I had a history of migraine headaches, so being the kind of girl who avoided drama at all costs; I reasoned this is just a strange migraine.
The sun set, the air chilled a little and we all went inside to watch the Tyson fight on TV while playing Pictionary. Adam and I were very good at the game I said to him… let us get thought this fast I am not feeling well – I have a headache. We raced through the board and let the others fight it out for second place and I laid down on the living room floor, everyone thought I fell asleep, I did not, and I passed out. They stepped over me and said good night and left. Adam tried to wake me to get me to go to bed, it took him a great deal to get me to wake – when I did he said, “You don’t look right at all!” I said, “Bad headache let me sleep”. I went to bed; thank God, I woke up in the morning. When I did wake, it was Father’s Day; we were to go to the Water Gap Country Club, where we were married a month earlier. I woke with the worst headache of my life and now I could not move my left side at all, I could barely walk, my speech was slurred and my vision was worse. I called my neurologist, a darling man named Elliott Grossman, and told him my symptoms, and he advised me to meet him in the ER. We called the Country Club and left word with my family that we would not be coming.
We drove to the ER and I was having such a hard time thinking, I couldn’t remember details of my wedding, details of our Honeymoon, I could hardly remember details of the last week… everything was a jumbled mess. When I got to the ER, I was put in a dark quiet room. They came in and evaluated me, took blood and gave me lots of pain meds. They thought I had an inner ear infection or possible MS. I was not sure what was going on but the pain meds helped and they sent me home, which was a huge mistake, but I survived so I guess no harm no foul right?
I slept the rest of the day and straight until Monday morning, I called work and told them I would not be in. Mid-morning my doctor called, he was tense, he asked do you have any antibiotics in the house, I said yes and pulled out bottles with one or two pills in them and read the labels to him. When I finished there were three different types of pills I had in various doses. He said, “Take them ALL now”, I did as I was told. He then said he wanted an MRI done I said OK, I will go down now. He said who is there to drive you. I said nobody I can drive myself, he said NO you cannot – call your husband. I did, Adam returned home and then took me for the MRI. After the MRI, I went to leave and they stopped me. I was clueless as to what I had done or why I needed this test. All I knew was I had a nasty headache and my left side stopped working, I was 20 years old and yeah I had this IHSS / heart murmur thing but so what I am young and healthy this is all over kill. They said you need to go be admitted to the hospital. I was in shock, I didn’t pack, and I don’t have anything with me, why am I going to the hospital?
I was admitted to the hosptial. They asked, “why are you here?’” My reply, “my doctor told me to”. They looked at the records, smiled, processed the documents, and sent me to the room. An IV was started and antibiotics were given. I did not know how much they would burn but every 4 hours 4 million units of straight penicillin were pushed through my veins. The 2nd day I was there a nurse came in my room and said in a cheery voice “Where is my Stroke patient today?” I looked at her and smiled and said “I am not sure who you are looking for I am the only one here today my roommate left this morning”. She laughed and said “I know that I was looking for you.” At that moment the world just stopped. I could not breathe. I went into a full anxiety attack. What the hell was she talking about? I am way too young to have had a stroke? She has to have to wrong person? This is not happening. Even writing about it today 25 years later, it still makes my head spin. Every day the IV would fail, be moved and fail again. I spent 10 days in the hospital on IV’s, after all my veins blew out I was given a Hickman catheter in my chest and sent home on 8 weeks of IV therapy. Me being the one to ‘never let them see me sweat’ went back to work at 4 weeks – half days and lied that I was fine. The truth was I was different and my memory was a huge issue. The 6 months before my stroke are still a jumbled mess, sadly that includes my wedding and Honeymoon.
Well, I was the stroke patient, the 20-year-old stroke patient. That was then, this is now, today I am a stroke survivor. Let us see what happened from the vantage point of 25 years later.
On May 18, 1990, I had an emergency root canal done. My dentist at the time knew I had a heart condition and told me that genetic heart conditions do not need premedication (he was wrong). You see there is something that happens during dental work, bacteria can enter the blood stream and they love to breed in turbulent blood flow. This is called endocarditis. That “perfect” environment is inside the heart, its warm, wet and there is lots of opportunity for those bacteria to grow and multiply. My little buggers attached themselves to the anterior leaflet of my mitral valve and grew and grew. While on my Honeymoon, those symptoms of numbness were TIA’s, little tiny parts of the bacteria were breaking free and getting “stuck”. These symptoms came and went over the next few weeks. The volleyball game was likely the incident that saved my life. The hit in the head caused the clots to burst through the veins in my brain in not one but three spots.
The odd and good news about my stroke is that prior to the event I had HOCM, meaning I was very obstructed, my gradient was in the 80’s at rest. After the scar had healed on my mitral valve my gradient was 12 and remains there today. Therefore, I joke from time to time that I had therapeutic endocarditis and spared myself open-heart surgery (myectomy). In reality, I would have much rather had the myectomy and saved my brain.
Time moved on… 5 years flew past then…
June 16, 1995
Many, who visit the HCMA site, know of a woman named Lori, she is the inspiration behind the HCMA. She was my sister, best friend and HCM warrior princess. While Lori’s story has been told here many times, what is often not fully appreciated are what else was going on at the time Lori died or the history of the family. You can read more about Lori and June 16, 1995 here.
A caring and sweet doctor whom to this day holds a piece of my heart, Dr. R. Wall, pronounced her dead at 4:36pm. Which was 5 years to the day that I had nearly lost my life to the stroke.
I was 8 months pregnant as I stood outside my sister’s room and I watched this man kiss her forehead and say goodbye and check one last time for any sign that a recovery was possible. I walked back in the room and for the first time in a week took a moment for my sister and I alone, unaware that her death certificate was already signed. I closed the curtain, I made deals with God or the Devil who ever would take me up on it… PLEASE let her stay. I held her hand to my belly and said Becca needs to meet her Aunt Lori, PLEASE STAY. I cried, I begged and I remembered the date.
It was not to be, there would be no deals, there would only be death and organ donation, she gave life to 3 others.
Two days later, we held her wake, on Father’s Day – it was not until years later that I realized something terrible. While I knew it was terrible for my father to have to spend his “Day” at his daughters wake, it took going through old family items to realize my father also attended his father’s funeral, on Father’s Day in 1953 – He died at 43 from HCM. How much does HCM have to take from one family?
Today June 16, 2015 – I ask ALL HCM families to do one thing… just ONE… Please visit THIS link… to learn about clinical trials available so that we can learn more about HCM and stop the cycle of loss due to the horrible and sneaky disease.
Your bighearted blogger,