My Story . . .
Thank you to all who have posted their stories, for I’ve found hope, connection, and community through the stories that I have opened. Together we can find comfort in knowing others have shared a similar experience. Survivor stories provided me with the courage and inspiration to share my story.
On the first of December I was driving home after accompanying my husband Steve to an optometrist appointment, recalling the recent Thanksgiving with our first grandchild, who was one month old. Though she was a full term baby, she caught an infection at the hospital and had to be transported at midnight by ambulance to the ICU at Dartmouth Hospital. She spent twelve long days in the NICU, but was thriving and healthy by the time Thanksgiving came around. Visions of decorating for Christmas when all our children would be home raced through my mind. Suddenly, I felt an incredible sharp pain traveling through and surrounding my entire jaw. My first thought was to pull over so as not to cause a crash. I was less than a mile from a small local grocery store, my second thought was that I would drive to the parking lot and wait for the pain to pass. In that short distance, the pain stopped, replaced by numbness in my legs and followed by tightness in my chest. I pulled to the side of the road determining I wouldn’t be safe to make a left hand turn and called our youngest son Sam. Thank goodness for voice controlled devices!
Sharp pain is not something I often feel, for I was diagnosed with rheumatoid arthritis in 2015 and I have an extremely high level of pain tolerance. Multiple doctors and physical therapists have commented on this, and when I say something hurts I generally get an immediate appointment.
Reaching our son, I told him something was wrong, described my symptoms, and location. Sam inquired as to what I wanted him to do and he advised me to call 911 or offered to do it for me. I told Sam to just come and to stay on the phone. Sam is the calmest person you’ll ever meet and did as I asked. He kept talking to me, telling me where he was as he got closer and closer, which helped me to stay as calm as I could be, given the situation. Sam kept asking if I wanted him to call 911 and I shared that he would need to make the decision for me. I didn’t want to bother anyone and I thought that perhaps he could drive me to the ER. Sam appeared and called 911. As he was dialing a police officer pulled up and radioed in for an ambulance too. By this time a second officer had pulled up on the opposite side of the road, it is a small town and this was possibly the most exciting thing going on. When the EMT’s arrived I expressed that I wasn’t sure I needed to go to the hospital, as the pain had passed and I just felt odd. They convinced me to go. I remember walking into the ambulance and joking with them all the way to the ER.
This is where gaps in my memory begin. I remember being wheeled in and seeing an ER nurse I knew as the mother of one of my former students. The ER doctor sent me off for a scan. I was in the machine for what seemed like a minute or two and suddenly a person was wheeling me out at what seemed like a rapid pace back to the room. Both Sam and my husband, Steve, were there. The ER doctor came in saying it was serious and would require surgery. He stated that he was waiting for the surgeon to call him back. As he was speaking to us, the surgeon did call. A sense of peace came over me and I remember reassuring Steve and Sam that I would be fine, it would all work out. I remember thinking that I wanted a celebration of life. I wasn’t sure if I had put it in my will and I wanted items or donations to be collected in lieu of flowers. Sam later told me that I had spoken all of my thoughts aloud. I don’t recall the life flight helicopter ride to Massachusetts General Hospital in Boston, entering the hospital, or anything about the surgery. The next memory I have is waking to see Sarah, our oldest, Steve, and Sam all looking at me. I think I floated in and out of wakefulness and at some point a nurse asked if I wanted something to eat. I remember my throat feeling sore and I asked for jello. My family laughed, as jello has always been my go-to food when ill. They told me I was in the ICU for a day or two and then would be transferred across the hall. I recall repeatedly telling them I needed to use the bathroom and being told I had a catheter that would take care of it. My catheter was not working quite right, so at one point there was a huge puddle.
My memories of the seventeen days at the hospital are filled with images, faces, sounds, emotions, and gaps. The kindness and gentleness of the nurses and other staff, and meetings with multiple physicians and other hospital personnel are all part of these memories. Doctors attempted to share what happened, yet I believe that my mind could only take in so much information. The gravity of all that I had experienced is still settling in and the jumbled memories are slowly falling into place.One clear memory I have from that time was the call from my insurance company that I received only a couple of days after I had moved from the ICU to a regular room. The agent explained that the surgery and ensuing hospital stay were not covered because they had not been pre approved. I explained that I had been life flighted to MA General for an emergency surgery and that I was still in the hospital. The agent expressed surprise that I was still there and I recall informing her that I could not talk to her at that time. Joshua, our son in Arizona, was another angel at this time. He dealt with multiple insurance agents, rehab centers, and hospital staff for me from afar. The hospital staff wanted to release me to a rehab center, but the insurance company repeatedly denied the requests. A week before Christmas, my case worker came in to tell me that I had been denied once again, I told her that I just wanted to go home. I was tired of all of it. Two weeks after I arrived home, the insurance company sent a letter saying I had been approved for admittance into a rehab center. Too late!
I also remember my principal calling and asking what he could do. I asked him to have my students create thank you cards for the helicopter pilots and staff, ambulance and police officers, and the surgeons and nurses. The students need to be acknowledged for the incredible job they did on their cards. They are amazing.
Sarah came to visit a few times from Vermont, despite having a new baby at home. One nurse was kind enough to allow them to pump in my room instead of using the public bathroom where they had been directed on other occasions. Steve and Sam were also frequent visitors who sat with me, listened to medical explanations, and eventually brought me home through a snowstorm. I was discharged with two surgical drains still in place, which I nicknamed “Merry” and “Bright”. Sam learned to drain Merry and Bright and did so until they were removed. My family demonstrated love and strength which guided me through recovery.
No one knows why it happened. I lead a healthy lifestyle, have no family history of aortic dissection, am not diabetic or overweight, nor a weight lifter, and don’t eat processed food or drink soda. I’m a vegetarian, a fifth grade teacher, and I hike, walk , and stretch daily. I prefer to use herbal remedies and rarely have a cold. Stress is a factor, yet we all have stressors in our lives.
When I arrived at Massachusetts General Hospital, surgeons were waiting. I learned that I had no blood flow to my legs upon arrival. I’ve been told the dissection was repaired, an artificial aortic valve was put in, my right femoral vein replaced something, and three stents were put in. It was a twelve hour surgery involving three surgeons and three heart lung machines, one for my heart and one for each leg. My knowledge of medical terminology involving the heart and veins has increased vastly and grows each time I visit a doctor in Boston and when I read stories and information on Aortic Hope. I thought stents went into the heart only, didn’t know I had bypass surgery and had never heard of an aortic dissection.
There were humorous moments throughout this experience. The PT was helping me use a commode and when I arose with her help I asked where all the blood had come from. Apparently, I had “sprung a leak” which made me burst into laughter, as we had a leak in our kitchen the week before I had my experience. We chuckled about the leaks in my life as she calmly put pressure on the “leak” until the Doctor on call arrived. At another point, I required two drainage bags to be placed by my right armpit which gave me immense pain relief. Since it was December, I named one bag “Merry” and the other “Bright”. I was able to label them using adhesive tape and some of the nurses referred to the bags by their given names when recording the amount of drainage in each bag. C.C., one of the nurses knew I was a teacher and she presented me with stickers one evening. Together we placed the stickers on Merry and Bright brightening my days.
“Rehab” has been both physical and mental. After three months, I returned to full time teaching. Seven months have passed, most days I feel fine, and hope to be able to return to full day hikes. Along with learning to live with the slow recovery from the aortic dissection due to the RA, I’m learning about PTSD. I’ve found an amazing counselor who has provided me with numerous strategies and ways to reframe thoughts. Small turtles are in each of my spaces to remind me to slow down, a perfect secret strategy! One misconception was that PTSD applies to veterans, victims of war, environmental refugees … and those that have suffered abuse, not me. I am learning that “grief” comes in many forms and no one person’s grief is more or less than another's.
Dr. Armindar Jassar, Dr. Eric Isselbacher, and Dr.Jahan Mohebali saved me physically, my counselor helps me to cope soulfully and spiritually. My immediate family, extended family, friends, and coworkers guide me with reminders to slow down, about how far I’ve come, and continuously tell me it’s ok to do less, appreciate more, and to take time for self care. I used to be a multitasker and viewed “self care” as selfish; now I’m learning it’s ok to ask for help, self care is necessary, and new ways of thinking take time.
Thanks to Aortic Hope members who suggested keeping a physical medical notebook, which has already proved useful! Members helped me to understand that PTSD can be a real result of an aortic dissection. During recovery, I created a healing notebook of all the cards from family, friends, coworkers, and students and often flipped through the notebook when I needed a lift. I still have the notebook to remind myself of all those who helped me heal. All of them are still there for me. Our granddaughter is the sparkle of our lives whose daily photos bring a smile and laughter to our home each and every day. Steve was always and is always by my side, encouraging me through his strength and presence. My adult children brighten our lives with their courage, laughter, and joyful adventures. Finally, students energize, challenge, and help me grow each day.
My hopes are that at least one person feels acceptance, finds comfort in my story, and the courage to share their story.