My Recent Near-Death Experience: What I Learned - What I Continue to Love
Before starting the story of my very near brush with death, let me first say that my love and appreciation for David and our children means everything in the world to me.
Four and a half weeks ago today (this was written in April), David flew to Florida not knowing if I would make it through the night, and he hasn’t left my side since. Anelise, our eldest daughter, picked up everything for us back home in CT. She spent the last few weeks caring for Wynston and the house—a lot of responsibility for a 23-year-old. The thought of our kids not having a mom and David having to raise the kids without our partnership, was my only concern, even when facing an 80+% probability of death. I guess it, thankfully, just wasn’t my time.
So here is my story, what I learned and what I continue to love: I was in sunny Florida in early February with 15-year-old son Harrison (who had taken a quarter’s leave from Staples HS to continue training as he pursues his dream to play D1 college golf). I just had a glorious round of golf and lunch with Cornell sorority sister Robin Foley Ackerman, when out of the blue, I felt a sudden pop/ripping sensation, an then consistent pain, in my abdomen and chest. I just didn’t feel right, really not right.
I was standing talking to a group of people on Jupiter Island beach, hesitant and even a bit embarrassed to say anything. I pulled Robin over and said I felt strange and needed to sit down. After an hour of sitting around to see if the feeling of rocking and rolling inside my body might calm down, it didn’t. At Robin’s mom’s nearby home, we then checked my vitals - blood pressure, pulse etc. – all normal, yet still I didn’t feel right but rather very light-headed. Robin’s husband Paul, a trained medic, encouraged me to get to the emergency room, to which I drove myself.
Upon arrival at Cleveland Clinic in Stuart, FL, although I was looked at immediately, I was then virtually dismissed to sit for hours in the ER holding area. While my EKG was normal, and my heart rate was within reasonably normal range, my blood pressure was dropping quickly, and I felt increasingly disoriented. My bloodwork was not normal—it was well out of range for “D Dimer” levels, which can indicate clotting or other serious conditions. The next step for any ER is to proceed with a CT scan, but “the ER was busy” and I was left waiting for a CT scan for almost another 4 hours. I continued to press the call button but was dismissed each time. “You’re fine – you’re young, you’re thin – you’re fine,” I was told. “The CT machine is busy for the time being” I was also told, despite later learning there were several CT scanners in the hospital. I tried to communicate with urgency my concern about the tingling in my extremities and my light-headedness but was ignored each time.
It was only moments after the CT scan was finally complete that a team of doctors rushed toward me at top speed to exclaim that I was bleeding internally, was facing a life-threatening condition, would need immediate emergency surgery, and to start calling my loved ones.
I learned later that the rates of survival for my condition decline precipitously with every passing hour and that I WAS FACING AN AORTIC DISSECTION which is a reasonably rare condition in which the largest artery in the body tears, before eventual (and almost always catastrophic) rupture. Risks for this condition include high blood pressure, high cholesterol, pregnancy, power lifting, cocaine and amphetamine use, chest injury from a car accident, or rare connective tissue disorders. I had none of these known risks.
A philosophical acceptance and extreme calm took over my being as I made (what I was later told were) “deliberate, short, and miraculously calm” calls to each of my kids. I let them each know Mom was having a “little” surgery after a “little” accident, I loved them more than anything, and would call them the next day. I then called David, with whom I meticulously recapped our estate plan and my insurance policies for about 15 minutes. For the last 10 minutes before being wheeled into surgery , it was so lovely to hear David’s voice and know that he was with me spiritually in those possible last moments.
All I could think about was wanting to apologize for the likely prospect of leaving David to care for our large family…. While we have 3 young adults and two teenagers, Wynston will continue to need a lifetime of care, and the other children really need both parents for continued guidance in almost every aspect of their lives. With 40% of patients dying on the spot from Aortic Dissections, and another 30-40 % dying on the operating table, the odds were not with me. I was already 8 hours post-tear, my extremities and critical organs were losing blood, so what other choice did I have but to remain calm? It was either my time, or it wasn’t.
At 3:50am on Friday morning, David received a call from the cardiothoracic surgeon saying I had beat the odds, my surgery went as well as it possibly could – with zero complications, and that my prognosis was for 100% recovery. Of course, I will believe that when I feel it, but I remain very optimistic.
The surgeon paged to the ER was not only world class trained, he surely and not-sosimply, saved my life. He studied at Yale Med School, Penn for General Surgery and Harvard for Cardiothoracic surgery – and had even done an identical, successful procedure one week earlier on another woman. In this region of Florida, his presence alone was a miracle.
One of the key lessons learned from this trip to the ER is that the docs and nurses are always busy and pulled in many directions. Ironically, and sadly, the ER patients themselves are barely listened to – least so those in pain. ER docs cover, by definition, the broadest scope of medical conditions, leaving considerable room for diagnostic error. The ER system, in retrospect, seems pretty broken to me, especially since I came in displaying multiple symptoms of an Aortic Dissection.
One message from my experience is to ALWAYS bring an advocate with you to the hospital emergency room. I naively thought I would be capable of advocating for myself in the ER. Based on first over-reaction to my appearance, the ER doctor, the technicians, and the nurses all deemed my case low risk- enough to allow me to sit around for hours.
After a successful surgery , I stayed in the hospital for five days. The aftercare in the hospital was rushed, I was seen by nurses who admitted the inadequacy of their own experience, and all of whom were clearly overworked – with a patient: nurse ratio as high as over 6:1, which is clearly inadequate attention for a patient that had major emergency surgery. Adding insult to injury, nurses called security on David on two successive days when he refused to leave my side.
David and I first learned how important having an advocate in the hospital was years ago when two of our children were in a near fatal car accident with my folks. Thankfully, we were then around to advocate for them.
It appears that Aortic Dissection is largely an emergency health incident and a surgically addressed problem, rather than a medical condition. I have had low blood pressure and cholesterol my whole life and eat (as many of you know) almost exclusively organic, gluten free foods and exercise very regularly. The aorta has three layers, and before “dissection” (tearing) or outright “rupture,” the aorta’s inner lining sometimes weakens and pulls away from the outer layers. Jamie Dimon of JP Morgan had the same incident and surgery about two years ago and is back running the global bank. His diagnosis, however, was immediate and the response to his early morning call to his doctor was “Jamie, take a cab and I’ll meet you at the hospital - you don’t have time to wait for an ambulance.”
Jamie Dimon’s full recovery is very inspiring and encouraging. There have been other famous people, however, who were also misdiagnosed and did not make it - including Jonathan Larson (RENT) who died at age 35 after two misdiagnoses at the ER, and John Ritter (star of TV’s Three’s Company). His wife , Amy Yasback , has set up The John Ritter Foundation for Aortic Education. A few other famous people who did die on the spot of an aortic aneurism (somewhat different from my situation, but related ) included Albert Einstein and Lucille Ball. If you have a family history that includes a “sudden death of unknown cause” that alone is a good reason to be followed medically for this condition, including getting an aortic scan . I had no known risk factors but might have missed something in past checkups. Or maybe it happened from playing golf or perhaps was totally random.
I’m sharing my story today so that you may be more aware of any family risks you might have and to take action to prevent unnecessary loss. While it’s a pretty rare occurrence, it’s not an infinitesimally improbable one.
There is always room to be more aware, know a few signs to look for that a hurried doctor might miss, and take your own preventive measures. Aortic Dissection does seem to affect otherwise healthy people in their 40s to 70s and even younger. While I do plan to explore how this could have happened, I am not expecting many answers. That said, we will monitor our kids more closely and my brother will continue to monitor his situation.
Of course, more than anything I am grateful to be alive. I am also very blessed to be able to say that although I have just been through a near-death event, my goals in life remain, as are David’s, largely unchanged. This threat to my life has largely reaffirmed the path I had already chosen and the recent changes I had made. I love working at RoundRock Advisors, and helping individuals plan for their most secure financial life. I have focused on women’s financial issue management, mental health and special needs financial planning, as well as the protection and transfer of wealth to children. Nothing means more to me than children.
My favorite pastime continues to be spending time with David and our kids, being a “Mom Rock,” and definitely am planning to get back onto the golf course and in our pool soonest with friends and family. The surgeon was not able to promise me an improved handicap but thinks I should be back on the course by late spring. I wouldn’t change anything in my life, except having this last emergency. My passion for stock markets is deep, and my love for my family and families is everlasting.
I am not interested in a sedentary life, so full recovery for me is the only option, including advocating in the school system for our Autistic son Wynston and guidance for all our other kids on life, career, relationships, finances, etc. in partnership with David.
What this incident has also taught us is that even “Plan Bs” may be inadequate for families like ours - and we now recognize a glaring need to have more adult care that is reliable nearby or in our home. David was needed in two places – caring for me in Florida, and caring for Wynston in CT. We have almost no family, and no one in our community would be trained or available to help with Wynston, who requires 24/7 eyes on him. He has a level 8 of 8 on the government need scale. And we had put off updating our wills, which is #1 on the docket this week.
We got very, very lucky this time, that our precious Anelise was off from work at the time (she is a junior golf pro at Burning Tree GC in Greenwich) and that she is as practical and competent as she is. If anyone knows someone who is attentive, trustworthy, has a caretaker personality and would like a place to live in our home or cottage in Westport, as well as a part time job in our home, we would be very grateful for any suggestions.
For the next few months, short visits and healthy food are very much appreciated, as are suggestions any streaming video series . A special thanks to our neighbor Hiroko, who brought food many evenings in a row to feed Anelise and Wynston. And a special thanks to Robin who checked in with us so frequently in Florida and who made what I thought was my last day on earth a lot of fun. Thanks to everyone who has sent food. It’s an extra challenge to deal with meals, and Uber Eats is not a wonderful solution for healthy eating. Community support is very healing. With little family nearby, having a community that we love is awesome. Westport is the best.
I will pick up the phone when I can, although I have been on the phone constantly (which is taking a toll) with my children everyday, talking about stock markets with my clients and my friends, dealing with follow up medical care, house problems, and with the continued management of Wynston’s and Harrison’s school programming. I may not be able to get back to you for a little bit. I am also trying to pace myself as I regain strength.
I have definitely been navigating (sometimes drifting a bit!) through the stages of grief and recovery. Grateful to be alive, and at the same time , feelings of why me? This letter has been challenging to write but will replace repeating the story of the last few weeks to you all. I speak to clients and friends every day about planning for risk and this invisible risk awakened me and David to the need for even more contingency planning.
For now, we are just enjoying being together as a family and taking life and recovery one day at a time. I continue to love my friends, family and community, and remain grateful for your support and understanding as I continue my recovery over the weeks and months ahead.