On Anger

The transplant process is weird. I still have guilt to this day that someone had to die for me to live, and I feel an immense anger over everything I went through.  I live with that every day, and I still can’t bear to think about it. In fact, for the past two years, I have tried to distract myself by having constant noise (podcasts, music, magazines, books, fitness, mostly my loud child 🙂 ) in order for me to numb out those feelings.  As a therapist, I know this is my coping mechanism- distraction.  But it sometimes feels impossible for me to manage those emotions. One of the things I have struggled with most after the transplant is the conflicted feeling of being tremendously thankful that I got my heart in time, but also furious that I had to deal with being the “sick girl” for so long. I am angry that I had such a dangerous and traumatic pregnancy, that Ethan was premature, and that I needed that transplant after years of being so healthy with fitness and nutrition.  I am angry that a doctor at a smaller hospital misdiagnosed me in 2010, and called to tell me on voice mail, “I know you must be very angry with me, but I hope you can still enjoy a nice salt free Thanksgiving in the hospital.” when I first went to Brigham and Women’s at 21 weeks. Here’s the thing. I can steam in that anger, I can try to sue, or I can realize that if I had gone to Brigham in 2010, they would have told me I could never be pregnant. So there’s that. No Ethan. I think I shall choose to let that part of my life go.

The transplant itself was easy.  The before and after were the hard part. Waiting for “the call” was excruciating, weaning Ethan from breastfeeding stirred up a deep depression within me, and moving to Tampa (caring for Ethan alone and only being able to see Andrew on the weekends) so I could actually get my heart was horrible. I stubbornly tried to live my old life before I got sick, despite everyone being afraid I would drop dead while taking care of Ethan alone.  Everyone walked on eggshells because I would get so angry if anyone challenged my behaviors.

Here’s the after picture for you.  I am so healthy now.  I can horse around with Ethan and run around all day long without needing to elevate my legs for hours. I can have energy to do anything I want to- including boot camp classes with my amazing group of friends and their kids in Mama Beasts class (hi mamas!). I can go to yoga, and I can laugh and play and not obsess about if I took my diuretic on time, if I drink 8 ounces too much of any liquid beyond the limit the doctors set for me, or if I am going to suddenly die.  All of that is beautiful and amazing.  But no one tells you about the hard parts.  Things have changed. Things outside my control. I have to take anti-rejection medications for the rest of my life, including the dreaded prednisone. So my body changed.  Here I am, living a healthy and full life, but I hate that I look different and it is outside of my control. Vanity needs to stay at the door after this surgery, because I can’t control any of these changes. If I stop my medications, I could go into a severe rejection episode, and potentially die. Still, the changes are hard to accept.  Andrew always tells me I need to be more kind to myself, and I need to give myself a break. Here’s what I think. Being crazy with all the minute changes, the doctors appointments and biopsies, and all the drama that came along with the surgery- that obsession has served me well for two years.  I have been able to reroute my trauma from the whole experience, and focus on the nitty gritties that seem silly for me to even think about. It’s time to let that go, and accept where I am now.

I have made many friends in the transplant community, and what I tell other people awaiting for a transplant or those who have just had one is this: It is ok to feel anger and gratitude at the same time. Every time I feel angry, or frustrated with my new body, I have guilt. I say- I should just be thankful! It’s so stupid to focus on these little things! In my job (when I am working), I give out great advice, but sometimes I just can’t take my own pearls of wisdom. My daily goal is more gratitude and acceptance, fewer distractions, and more presence. And letting go of the old me. The new me is a much better mother, wife, and friend. I wouldn’t change that for anything.

 

Against Doctor’s Orders

I thought it would be fun to show you exactly what my book is about.  Some of you may know the whole story, and some may not.  The following writeup is a query letter that I sent to publishers and agents as a way to see if anyone is interested in publishing my story.

 

My recently completed memoir, Against Doctor’s Orders, shares a truly unusual life threatening journey through pregnancy and heart transplantation. My journey required me to make decisions with extraordinary consequences for me and my unborn child.

 

In 2012, after multiple failed IVF cycles, I became pregnant. I experienced bizarre symptoms early in my pregnancy. At 21 weeks, I drove myself to a local hospital thinking I had the stomach flu. Within a few hours, I was taken by ambulance to a major Boston hospital where I was told I was in acute heart failure. After one day of observation and tests, I was diagnosed with a rare autoimmune heart condition called endomyocardial fibrosis. I was only 32 years old, an extremely fit and healthy psychotherapist, fitness instructor and yoga teacher.

 

One week into my hospitalization, a team of cardiologists and OB/GYN physicians from one of Boston’s most reputable hospitals gave me a version of Sophie’s choice: I had to abort the pregnancy, or both my son and I would likely die. I also was told that I needed a heart transplant…soon.. I couldn’t bear to end the pregnancy I had tried so hard to achieve. Given that my life and that of my unborn child hung in the balance, I remained in the hospital for the next two months.

 

My son, Ethan was born nine weeks early, a fragile premature 3 pound baby who spent the first seven weeks of his life in the NICU. When Ethan was four months old, we traveled to Tampa, Florida for my heart transplant. The waiting list for a heart was too long in New England, and I was not eligible for a Ventricular Assist Device to keep me alive until I could get a new one.

My memoir chronicles a story of hope, heartbreak and eventually survival against long odds, for both Ethan and me. The story begins when I first experienced heart related symptoms in 2010, but was misdiagnosed by a cardiologist, and told that I would have no problem with a pregnancy. It ends happily, with Ethan’s survival without impairment and my successful heart transplant.

Both Ethan and I are thriving now. I have the energy to do all of my old activities, and I love chasing him around and spending my days with him. My husband and I are about to begin our journey towards a second child using a surrogate, since it would be very risky for me to be pregnant again.

I have been through more turmoil and distress in the last two years than any mother should have to endure. However, I was supported by hundreds of people, many of whom have encouraged me to write this book and share this extraordinary story. I risked my life for my unborn son and when I see him now, a happy and healthy two year-old, I know it was a risk well worth taking. The story is suspenseful and heartbreaking, but ultimately heartwarming.

Thank you so much for taking the time to read this. I’d be happy to answer any questions you might have.