Spotlight Interview: Pauline

Hi again everyone!

I'm here with another spotlight interview, this time with Pauline, whose story is incredible--not just because of what she went through, but because of her strength.

You can sign up for the Open EARS program here.

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Spotlight Interview: Susie

Hey everyone!
I want to share with you an interview I did with a fellow CHD patient, Susie.  It was sooo nice--we talked about all the feelings and struggles of being a lifelong heart patient.

P.S. You can sign up for the Open EARS program 

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Introducing Open EARS for Open Hearts

Hi friends!

Check out this interview I did with Lisa Drennon to talk about my new coaching program, Open EARS for Open Hearts.  This 16-week program empowers open heart surgery patients to navigate their treatment and recovery and take charge of their overall health.  If you want to learn more, you can book a call with me here.

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My Life as a CHD Patient: The Aftermath

My Life as a CHD Patient: The Aftermath
Welcome to the last post in the My Life as a CHD Patient blog series!

After my pulmonary valve replacement in 2018, I fully expected the physical pain and discomfort that I went through.  In fact, the reality wasn't as bad as I thought it would be.  As I mentioned last week, my pain was managed okay and, although a lot of things happened that I wasn't expecting, I felt as if my medical team had tried to prepare me for the surgery.

I did not at all expect the emotional turmoil that the surgery would throw me into.

Having a congenital heart defect, I had been in and out of cardiologist's offices and hospital rooms my entire life.  I wasn't kidding myself into thinking that open heart surgery was going to be as easy as a cath, but I really thought that after 25 years of this, I'd be used to it.

I wasn't.

I was terrified the entire time that I was in the hospital and for weeks after.  I remember telling my mom that I could not handle having that level of anxiety all day, every day, and wondering when I would be able to calm down -- when I would be "out of the woods."

I also had depression to contend with.  I felt like, in fixing my heart, they had taken part of my soul.  I felt like the me that I knew stayed at the hospital and a new, sadder, more fragile me emerged.

That new me stayed around for a long time.  Almost a year after the surgery, I was putting together an essential oil diffuser in my apartment.  I dropped the frosted glass casing and it shattered.

I burst into tears, but not about the glass.  As my husband held me, I cried for an hour, repeating "I'm broken, I'm broken."

I wished the surgery had never happened.  I felt completely separate from my body and I hated it for putting me through this.  And the worst part was that I felt stupid for feeling that way.  This surgery saved my life.  I didn't feel like I was allowed to feel negatively about it.

Slowly, though, it got better.  I did a lot of therapy and sought support from loved ones.  I educated myself about medical trauma and how to cope with it.  I learned what my triggers are and what to do when I am triggered.

But I think the thing that helped the most was just time.  The more space I put between me and the surgery, the better I felt.  My body healed and I was able to do a lot more than before surgery.  That helped me feel like everything I went through was worth it.

My trauma still affects my life from time to time.  I try to avoid medical procedures as much as I can -- just the other day, my mother-in-law suggested that I look into laser eye surgery.  I (half-jokingly) told her my body had been through enough and I didn't want to choose to put it through more if I didn't have to -- I'm content with my glasses.

This experience isn't something I'll ever "get over."  It's a part of my story now, and I can't erase it.  But I have gotten to the point that I control my trauma symptoms and not the other way around.

You can get to this place, too.  Seek support.  Educate yourself.  Most importantly, give yourself time.  No matter how old you are or how "straightforward" your case is, open heart surgery is a major traumatic event.  It's not something the human body is ever meant to go through.  So it's okay if you're not okay.

Thank you all so much for sticking with me through this series.  I hope that, by telling my story, I can encourage others to see the light at the end of the tunnel.

<3 Amanda

P.S. The picture is of me and my sister about 2 days post-op.
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My Life as a CHD Patient: The Recovery

Welcome!  Today's post is about the recovery from my second heart surgery.

The first thing I remember thinking when I woke up was "I'm alive--now what?"  I had been so worried about what would happen if I didn't make it through surgery that I hadn't thought much about what I would do if I did.

I woke up in the PICU and was on morphine, oxycodone, and fentanyl.  I still reported my pain as an 8 out of 10.

I want to pause here and give you some real talk about pain management.  I'm not gonna lie, I was in a lot of pain after my surgery.  It took a lot of drugs to get it to a manageable level.  I totally understand if that scares people; it scared me, too.  But I do want to say that I don't have a very high pain tolerance, and although it was painful, I did manage the pain okay and got through it.

Another thing I want to make sure I mention is that waking up from anesthesia is a process.  You don't wake up and are immediately 100% awake and alert.  I was mentally not with it for about 2 days post-op.  In intensive care, I was aware of people moving around me but it was difficult to stay alert enough to know what was going on.

Sometime after I woke up, I suddenly could hear my heart pounding in my ears.  This was pretty scary since, y'know, I'd just had open heart surgery.  So I told one of the many medical professionals in my room and they told me that it was because they had given me epinephrine because "your blood pressure is a little low."

Now, my blood pressure is always a little low, but they didn't tell me at the time how low it was, so I thought maybe they were reacting to something that was just normal for me.  I also didn't appreciate them not telling me they were giving me epinephrine.  I asked them to please tell me when they stopped giving it to me so that if my heart was still racing after, I would know there was something else wrong.

I tell this story all the time to illustrate the importance of advocating for yourself in medical settings.  I truly believe that most medical professionals strive to provide the best care to their patients every day.  But they're human, too.  They get in the groove of their job and forget that the things they deal with every day are once-in-a-lifetime experiences for their patients.  They are also under an insane amount of pressure to get as many people treated as fast as possible, because more patients means more money.  This can lead to honest mistakes.  Unfortunately, it's on us as the patients to catch those mistakes and remind them that we are humans, not dollars.

My advice to you is to ask ALL the questions, and don't stop until you're satisfied with the answer.  Nobody cares about your health more than you.  Make sure everyone around you knows how important you are to you :)
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