The annual biopsy and other fun stressors :)

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I find it ironic that I wrote my last post saying I thrive when life is full of mayhem. I pretty much shot myself in the foot there, because my stress got pushed to the max over the last few weeks!
My two day long annual biopsy was suddenly pushed up earlier because of a potential nurse strike at Brigham and Women’s Hospital (which they have since won! Hooray for no strike!) I hate the idea of leaving Ethan for two full days, and had to scramble together to find childcare for him. Luckily, my parents are close by and they were able to take him for one of the days, and I was able to find a sitter for the other day. I was highly anxious going into this biopsy, since I never know when I am going to have rejection. I always say – heartburn is never just heartburn when you’ve had a heart transplant. Before I got sick, anytime I felt any bodily discomfort, it was no big deal. Since my transplant, I am always panicking that any symptom that I have could potentially indicate rejection. Rejection is exactly what every transplant patient dreads, when your body is smart enough to identify the foreign organ as something that does not belong there, and the body starts fighting against it. If that is not caught early, it can be truly deadly. If it is caught it soon enough, it is treatable with high-dose steroids, and in some cases, chemotherapy. Fortunately, mine has never been severe enough to hospitalize me, though I did have some pretty severe rejection right after my transplant and was treated with a three day long intense infusion.
Being married to someone who has medical anxiety takes this to an entirely new level. I generally want to try to keep it to myself if I am feeling unwell, since I don’t want to send Andrew into panic mode. I can’t even imagine the worry involved being married to me! There are times where I have had indigestion, or have felt as if my ankles were swollen, and the anxiety that I feel inside of myself is indescribable. I spend a lot of my time worrying that I will not have a long life, or that something may suddenly happen to my new heart. I have to remind myself to take deep breaths, and stay present without panicking about how long this new heart will last me. I also like to remind myself that new advances in medicine are happening every day, so perhaps I won’t need another heart transplant in the future. Honestly? The transplant itself was not that bad! The hard part is the emotional aftermath, the side effects of all of the medications, and coming to grips with everything that has happened to me over the last few years without being angry at the world. I know how strong I am, and I know that I could do it again if I needed to.
It is always a huge relief when I have a clear biopsy, since most of the time I do seem to have a very mild rejection happening in my body. This time around, I got word that there is zero rejection, and the heart looks great!  I am slowly starting to wean off of my prednisone. Hallelujah! The day after I got this wonderful news, I was offered a contract with a small publishing company to publish my book! Words can’t describe how excited and honored I am! More to come on this.
Finally, we are still trying to sell our house, which makes me feel pretty much an incessant amount of anxiety at all times of the day.  It is not easy trying to keep the house impeccable and properly staged for any potential buyer! I am excited to move and begin this next stage of our life, but also nervous about the changes. Many of my memories of our house are tied into me lying on the couch with my legs elevated on pillows while I was really sick with my heart failure. I am ready for a fresh start! Lots of changes to come this summer, all very exciting. I am looking forward to spending the weekend with family for the Fourth of July, and I will update again soon!

Ch ch ch changes

What a whirlwind of a week.  Lots of change happening around here. I have realized over the last few months that I am unable to sit still without something “big” on the horizon. When I first started to get sick in 2010 with all of this heart stuff, I found myself on the couch day after day, bored out of my mind and itching to go back to work. I would make it a goal to find a project to work on, first of which was my career change and the plan to open and private psychotherapy practice, along with taking a course to get my certification in coaching to add to my practice. Months later, I also got engaged to Andrew, and planned our wedding for 6 months after.  My family always jokes that I am a “right now-nick” and that is truly the case. When I put my mind to something, I want to make it happen that second.

This has become a good distraction for me, but can also be problematic. As soon a Andrew and I got married, we found a house, and months after that started a gloomy year of multiple failed IVF cycles. Next up was the crazy pregnancy, all the heart stuff- the months living in the hospital, the NICU, planning the trip to Tampa, the transplant, and finally coming home. Then what?

We have worked for almost a year now to set up our (fingers crossed) upcoming pregnancy through our gestational carrier and lovely friend Jess. We feel so blessed and lucky to have met this amazing woman and mother of 3- it truly takes a remarkable and selfless woman to bake our baby for us for almost 10 months! We have been through a long process to get here, completed the dreaded IVF cycle, and we are ready to transfer the embryo next month! LOVE YOU JESS!

Now, did I mention we are moving next month too? We made the decision a few weeks ago, and are getting ready to pack in the end of July. Holy craziness. We are not moving far- just to the next town over of Dedham, and we are very excited!

Here’s the thing.  I truly do believe that I thrive off of this hectic life. momande

I don’t like to stop and think about all of my medical issues. I don’t like to remember all of the things that have happened in the last 6 years. “Doing stuff” keeps me moving forward and helps me stay positive and energized.

So though I anticipate the next few months with be very crazy, I am looking forward to the mayhem. Mayhem works well for me. 🙂

 

 

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.