One year later.

Exactly one year ago, I was getting my heart ripped open. And not in the metaphorical sense.

I remember not being able to sleep much the night before, and scrolling through Twitter and being blown away by all the support from people who had read this very blog. Some people I knew, some were complete strangers, but the overwhelming compassion from so many allowed me to get out of my hotel bed and face a day, and a reality, that I had been dreading.

I walked to the hospital with a bolstered confidence, and a knowing calm that everything would be fine.

In the grand scheme of things, I was right, but what I didn’t realize was how much of a challenge the next few hours, days and even year would be.

From the first moment of consciousness after the surgery where I struggled to open my eyes and frantically tried to get someone to take the breathing tube out, I’ve been fighting.

From the next day when the doctors made me walk around the ICU hallways, despite an overwhelming pain that is like nothing I can ever describe.

From a few days later to when I was told I would need a pacemaker because the surgery had caused complete heart block and my lower chamber couldn’t beat without it.

From a failed first pacemaker implantation surgery a few days after that — which caused my heart rate to drop to frighteningly low rates, every time I so much thought about moving.

If you told me a year ago I would be writing a blog post today, I would have assumed it was because I was preparing to run a half-marathon or because I had one of the most impressive recoveries in recorded history or something to that effect. I went into the surgery with the hope and belief that I would feel like a new person, and that I would never have to deal with another symptom again.

However, life isn’t always perfect, and my hope, quite frankly, did not come true. But, I wouldn’t change a single moment of the last year.

While living, and more specifically actively living, with a pacemaker has been difficult, and requiring of constant adjustments and doctor’s visits, I have made the best of my situation, and for that, I will always be tremendously proud. I’m not training for a half-marathon, but I am running in a 5K next week. After successfully completing seven months of cardiac rehab multiple times a week with the most patient and incredible nurses, I am now running about four to five miles most mornings on my own.

Some runs are good, some runs are a struggle and, occasionally some are impossible, but I’m always glad I tried. The first two minutes are always horrible as my heart tries to adjust, and it feels like it’s being squeezed so hard the blood has stopped flowing all together. It usually recovers fairly quickly, and I can continue, but it’s not the ideal way to start a workout to put it mildly.

But, when I make it through that horrible feeling, and I usually do, and I keep going, it makes the rest of my day feel comparatively simple. I feel like I can do anything.  A big project at work due in three hours? No problem! Trying to balance 700 things? Easy.

While all my symptoms might not have ceased, and I even have some ones I never had before, there are other things I’m able to do that I never could have done before. Things like walking up a flight of stairs while carrying on a conversation or going on a hike up a steep hill had become very difficult, but now I am able to do them regularly.

And, more importantly, I have a new perspective. I appreciate the little things and all the amazing people in my life, and try not to sweat things that are out of my control. A few days after getting out of the hospital last year, I wrote about hoping to always appreciate feeling the sun on my skin after being stuck in a stuffy hospital room for so long. I’m happy to say, I still do appreciate that every time I step outside. I don’t take a ray of sunshine, a breath of fresh air, or even a hug from someone I love for granted.

When I think back to a year ago, I wanted to one day share a perfect tale of recovery and redemption. That day isn’t today, and it might not be ever, but I’m so grateful for everything I do have, and for all of the incredible people who I’ve encountered along the way. To all of you I say simply, thank you.

A long overdue update.

When I was in second grade, a family friend bought me a diary to write in. I wrote a grand total of one entry, and it went something like this:

Dear diary,

I hate diaries!

Love, D’Arcy

Clearly, not much has changed as I have pretty much failed as far as this blog is concerned. I’ll admit, when I first got home from the hospital, everything felt too overwhelming and every time I tried to write after that initial entry, I just couldn’t do it. I also received an outpouring of support, which was incredible, but also several stories from families who had experienced similar situations. I was not emotionally ready for that. Honestly, I’m only really now at a point where I can process things of that magnitude. I apologize to anyone I didn’t respond to.

But, I am happy to say, I have an update! And it’s a good one. After a rougher-than-anticipated summer with some scary episodes and nearly passing out, I finally am running again. Just typing that sentence almost made me cry. I’m that happy about this development.

Prior to the surgery, running grew increasingly hard for me. As someone who once was a pretty decent runner and athlete, this was devastating and one of the many reasons I went ahead with the surgery. I had lofty expectations for my recovery and said to a number of people I was hoping to run a 5K in the near future.

However, every time I tried to run during my cardiac rehab sessions, my heart rate would, without warning, just drop to half the rate. It felt like literally hitting a wall, and caused me to nearly pass out. To say, it was disappointing, and scary, would be the understatement of the year.

But, thanks to the incredible diligence of the nurses at rehab, my cardiologist at Hartford Hospital and the pacemaker nurse, we finally determined it was pacemaker-mediated tachycardia. When my heart rate reached its designated limit, it just dropped in half. Pacemakers aren’t designed for young, active people as it turns out. But after a few rounds of tinkering with settings and (unfortunately) being put back on daily medication, it seems we finally have it right.

Last week, under the monitoring of the nurses at rehab, I finally successfully ran. I’m sure it wouldn’t be impressive for a casual observer, but I managed to do four two-minute intervals of running, at a very slow speed, with five-minute intervals of walking in between. I nearly cried I was so happy.

Since then, I have successfully run two more times on the treadmill and even played my first round of tennis since surgery over the weekend. I lost, but not too badly, and you would be hard pressed to find anyone ever look so happy to lose. I was genuinely just thrilled to be back out there.

It’s been a hell of a journey to get to this point, but it feels so amazing to be here. All of the setbacks and challenges have made this feel that much sweeter, and I am the proudest I have ever been of myself. I don’t think I could have worked any harder, and I managed to stick with it despite everything.

And I’m not done yet. Maybe that 5K is in my future, after all.

Thanks for all the support!

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.

Here we go.

“So, do you have any history in your family of just dropping dead?”

The doctor took a step back and looked at me quizzically before scribbling on his notepad.

“I, um, don’t think so,” I eventually stammered back.

He replied with some sort of confused sound, before telling me he was going to call my parents so they could take me to the hospital. In the meantime, I was to go back to my biology class.

I was 13, and had until moments before, been thrilled to have made my high school’s varsity soccer team.

But now I was scared shitless.

I went back to class, acted like everything was fine, and then my dad came and got me and off we went to the hospital down the street. In some ways, my life really hasn’t been the same since.

After making the team, I was required to undergo a standard psychical. As my normal pediatrician wasn’t able to squeeze me in, I saw a doctor I had never seen before at the school’s health clinic. When listening to my heart with the stethoscope, he immediately heard a pronounced murmur and was alarmed.

Over the next few days I saw a stream of cardiologists in the area, before ultimately finding a pediatric cardiologist who diagnosed me with two valve deformities and found leaks as a result. Despite the initial panic, he assured my parents I would be okay with regular monitoring and most importantly, in my head anyway, would still be able to play competitive sports with just a few restrictions.

He did however warn that I would probably need surgery down the road, but it was a long ways off.

Except, it isn’t anymore.

Tomorrow, I’ll be undergoing a septal myectomy – an open-heart procedure that will remove a large obstruction in my heart.

And once again, I am scared shitless.

In high school, I earned 12 varsity letters and played soccer, basketball and track. I lived for sports, and was so lucky that my condition wasn’t bad enough to prevent this. However, at the end of my high school career, I was given the news that I wouldn’t be able to play soccer in college. It was devastating.

Since then my symptoms have continued to worsen, and – long story short – I can now barely make it up two flights of stairs. In 2014, I was diagnosed with hypertrophic cardiomyopathy with obstruction. If you’re a basketball fan, this likely sounds familiar. It’s the disease that took Hank Gathers’ life in 1990, and has affected scores of others over the years.

For someone who lived and breathed sports for so long, it’s been a tough few years. I take daily medication twice a day to help control my symptoms, but despite being on maximum dosage, I still have days where any excursion is problematic.  My exercise is severely restricted, and I have had some scary incidents when trying to push it.

In the fall, my cardiologist in Hartford suggested I go to the HCM Clinic at Tufts Medical Center in Boston to see what they would suggest in terms of treatment. I was expecting more of the same – Medication! Don’t work out! Deal with it! — but was stunned when they advised surgery after several tests and evaluations.

It felt like being punched in the stomach when they told me, but after the initial shock and fear subsided, I realized what a life changer this could be for me. It’s like being thrown a life raft with dramatic implications to the quality of my life. I might be able to run again. I might be able to play a pickup soccer game. I MIGHT BE ABLE TO WALK UP SEVERAL FLIGHTS OF STAIRS WITHOUT FEELING LIKE I’M DYING.

You probably can’t relate to this and have no idea why that’s such a big deal, but trust me, it really, really is.

I know it’s going to be a difficult few weeks, and probably months, but I am trying to keep the big picture in mind at all times. It’s not always the easiest, but I’m told my heart will feel better almost immediately.  I’ll be on medical leave from work for the next three months (!!!) so I hope to use this blog as a place to share updates, but also, as a place where I can continue writing.

I haven’t had as much as two consecutive weeks off since graduating from college so this should be an interesting experience. I would like to tell you I have plans on mastering a new language or learning how to knit, but that would be a lie. I am planning on watching every show Netflix and Hulu has to offer, and finally figuring out what my tagline would be on the “Real Housewives.”

So, enough of my rambling, I’m off to eat some pizza before getting my chest cut open. Thanks for reading, and I’ll catch you on the other side.