Finally home.

Well, THAT was something.

Last Wednesday, also known as “Mamba Day,” I had my scheduled septal myectomy done at Tufts Medical Center. I was a mixture of nerves, anxiety and hope during the wee hours before the open-heart procedure and was ultimately ready to just get it over with.

After six hours of surgery, it was all done, and declared to my family a complete success by the surgeon and his team. When I ultimately woke up about an hour after it was all done, I was feeling surprisingly not awful and alert. And once the (completely terrifying) breathing tube was removed, I was talking and even making some sense. I was in pain, but it was tolerable due to the medications, and I was just thrilled to see my boyfriend Jim, my parents and my sister Erin. I think it was a mutual feeling.

The next morning, I was awoken early by various doctors and my surgeon to check on my progress. They all remarked how well everything was looking, but I could tell something was being omitted. Eventually my cardiologist revealed that I was suffering from complete heart block – a complication from surgery that potentially could reverse over the next few days. I was to remain in the ICU and on a temporary and external pacemaker in the meantime. Doctors would frequently turn off or adjust said machine to see how my heart would react over the next few days. I’m not sure what the medical terminology is to describe what was happening, but “OH, FUCK” probably would suffice.

However, the complete heart block never reversed. By Sunday, it was determined that I would need to have a pacemaker implanted. I was devastated.

For months, I had prepared myself for open-heart surgery, and genuinely felt optimistic about it and how it could positively change my life. I never once allowed myself to think of the risks or the “what ifs?”

My spirit was broken. The idea of going back under for another procedure made me feel physically sick to my stomach, and the idea of relying on a machine to pace my heart for the rest of my life didn’t exactly help my feelings. The walls of my windowless ICU room felt like they were closing in. I had never felt this way before. Jim and my family mercifully never left my side during this time.

I had been given the option of a pacemaker or defibrillator, and ultimately went with the former after many discussions and deliberations. On Monday morning, I was whisked away to get my new addition. Thanks to my family and the incredible nursing staff, I was feeling emotionally better and knew once this procedure was over, I would finally be on my way to recovery.

I woke up as the implantation was ending, and was overjoyed to hear that not only would graham crackers be waiting for me, but I was being moved out of the ICU to a room with a window. Things were looking up!

As I arrived in my new room, I was met by Jim and my parents. It was such an incredible relief to see them. And then in a matter of seconds, everything changed.

I started to feel light-headed and dizzy, and all of a sudden doctors and nurses came running in the room – shoving my family out of the way. I remember seeing my mom’s panicked face as they closed the curtain and the parade of medical staff continued to quickly filter in and surround me.

I am not a good enough writer to describe the fear of that moment. All I can say is, I didn’t know what was happening and I felt certain for a brief second that my life was ending, and I was devastated that three people I love so much were so close, but yet so far away.

I honestly have no idea how much time passed, but ultimately some adjustments were made to the pacemaker (as it wasn’t properly reading my heart) and I was assured it wouldn’t happen again. I was grateful but shaken. However, by that afternoon, I was walking around and eating and feeling much like my old self.

But that unfortunately was short-lived. The next day, I had several episodes of dizziness, light-headiness and plummeting heart rates. That night, while attempting to wash my face in the bathroom, I knew I was about to collapse on the floor if I didn’t sit down immediately. On the monitor next to my bed, we could see my numbers dropping rapidly. After a short while, I felt okay but my confidence in my pacemaker was all but gone.

On Wednesday morning, a week after the septal myectomy that had brought me to the hospital in the first place, the electrophysiology team that had placed the pacemaker returned to my room and did something I’ve never heard a doctor do – apologize. Explaining the pacemaker I had was clearly not working and was not sufficient for an HCM patient, they offered to attempt to make more adjustments, but ultimately suggested I go back to the operating table and get a new pacemaker from a different company. This one, I was promised, would work and allow me to live a normal life.

As you might imagine, I wasn’t pleased. But I appreciated the candor and knew my current situation was a dangerous one. So I opted for my third heart procedure in eight days. I can assure you, that is a sentence I never thought I would write.

On Wednesday night, I had my two-day-old pacemaker removed and my second one implanted. I almost expected to feel symptoms as I returned to my room, but I didn’t. Jim sat tirelessly with me, well past visiting hours, to make sure I was fine. And I am beyond happy to say: I haven’t felt those symptoms since getting the new pacemaker.

On Thursday morning, after meeting with what felt like every doctor at Tufts, I was told I could go home that night. I have never experienced such a feeling of relief or gratitude upon hearing the news.

After nine agonizing days in the hospital, including six in the ICU, I was finally going home.

It was a harrowing experience all and all, and there were definitely moments where I questioned every decision I had made regarding the initial surgery, but I hold firm now in believing this was the best choice for me. I have to. Despite the pacemaker, I think I will still get to live a fairly normal life – something that was becoming decreasingly likely without the myectomy.

I have spent the last few days enjoying the sunshine, the wind on my face and all those clichéd “little things” that I used to talk about but never really appreciated. Jim and I (and our dog Beau) have temporarily moved into my parents’ house and, while I simultaneously feel nine and 90 due to my lack of ability to take care of myself, I am forever grateful for the unconditional love and support.

So, now all I can say is, onward and upward! I promise the next post will be funnier and less of the Debbie Downer variety.

 

A few unrelated notes:

  1. I cannot begin to properly express my gratitude to every single person who reached out since I posted the first blog entry. The support from both friends and strangers alike lifted my spirits more than anyone will ever know. Saying “thank you” doesn’t feel adequate, but I will start there.

 

  1. I briefly mentioned this above, but the nurses and tech staff at Tufts are incredible. I could go on for hours singing their praises, but their selflessness, hard work and positivity is truly inspiring.

 

  1. I am told what happened to me was incredibly rare and completely unexpected. In fact, many at the hospital remarked they had never seen anything like it. I am now hopeful to find my 15 minutes of fame in a medical journal someday.

 

  1. I am not allowed to shower until Wednesday, which means I will have gone TWO FULL WEEKS without a shower. I no longer feel a part of the human race, and am counting down the minutes until I can finally bathe. TMI? Probably.

 

  1. One of my biggest concerns heading into the surgery was if my unibrow would grow in. It did. I am very appreciative Cara Delevingne is around and popular these days. I wish that had been true when I was in fifth grade.

8 thoughts on “Finally home.

  1. Having had a close family member go through open heart surgery I find reading about your experience somehow therapeutic. Though I know the anxiety and loneliness of a waiting room as well as the fear and helplessness of being on the other side of the curtain I doubt I will fully understand their fear, anxiety and loneliness. Their betrayal. This helps.

    P.S. Said family member made a difficult but complete recovery and enjoys a happy, active and full life. I wish the same to you. Thoughts and prayers.

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  2. Wow…what an incredible journey. Thank you for sharing your poignant story Darcy. I am a yogi friend of your Mum’s….and I am glad you had your loved ones with you. Wishing you big bright beautiful days ahead full of great health and vitality!
    Peace~ Sharon Shanti

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  3. Wow. What a scary experience….or series of experiences. So glad you’re out of the hospital and feeling better, D’arcy! Best wishes for a quick recovery and a totally normal life from here on out!

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  4. Wow, D’Arcy! I am so glad that you’re doing well after all of the procedures. Onward and upward! Your positive attitude – and a shower! – will work wonders! I hope you feel better every day. Life is GOOD! ❤

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  5. D’Arcy, I watched you and Erin grow up. Thank you for sharing about this difficult ordeal. Difficult and unexpectedly drawn out as it was, I am so glad that problems were detected and resolved. In truth, you are one of the lucky ones. Most of the time hypertrophic cardiomyopathy (HCM) goes undetected, undiagnosed, and too often causes sudden death. Johnny was one of those.. his undiagnosed HCM led to his death in 2012, a week before his 22nd birthday. What should have been a “simple” out-patient surgery resulted in his death the next morning, as his enlarged, weakened heart could not survive the reduced respiration caused by the combination of residual anesthesia and post-op pain medication (oxycodone/Percocet). We did not know about his HCM until it was discovered in the autopsy; his extreme fatigue was put down to his being overweight, and his persistent night-time coughing (a symptom of underlying heart disease, who knew?) was overlooked. I am so, so happy that your HCM was caught, recognized, and now has been treated successfully. Please keep writing, talking about your progress, about living successfully with HCM. If I had read about, understood, the warning signs, symptoms of HCM in a blog like yours, perhaps Johnny might still be alive. Thank you, and all of my love and best wishes to you and to your family for your speedy and full recovery.

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  6. D’Arcy, I can’t tell you how great it is to read about your recovery. What a scary series of days, and surgeries, and experiences — you’ve been through more in the last couple of weeks than I can possibly imagine. Lots of love and strength to you. The whole team here at work is cheering for you. xo, Ali

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