Overcoming Obstacles

Loving This Broken Heart: A Look Back on Day 1 of Our Heart Transplant Journey

February 28th, 2020. It was our first appointment at the Yale-New Haven Heart and Vascular Center with a heart transplant team. Walking through the doors of a medical building on our way to an appointment with a cardiologist or some other heart-related medical team was nothing new to us.

Yet this time, the walk felt so different.

Prior to this appointment, everything seemed so routine. EKGs, blood work, routine checkups, stress tests, the occasional cardiac cath. My husband and I had fallen into a pattern that made these types of appointments seem normal.

While many of our friends and family had never even visited a specialist before, specialists had been all we knew.

My husband’s heart condition is fueled by genetics, making its grand debut when he was fairly young, long before we met. That means no lifestyle change, nutrition plan, exercise routine, or series of yoga classes have ever been able to prevent him from ending up back in the hospital.

And no, it’s not because “that’s what happens when you marry a young chick.” (chuckle, chuckle)

The first serious cardiac appointment I saw him through was about six months after we started dating. He went into the hospital for cardiac catheterization and came out with a brand new, sparkly stent that would send us back to our normal, active, adventurous life together.

The whole process of seeing your loved ones go through serious medical situations has always been somewhat of hypocrisy to me.

When we find that our loved one is ill, when we’re presented with the idea that some serious medical complications can take them from us, all hands are on deck.

Family comes out of the woodwork.

Friends who have been absent suddenly reappear.

Grudges that have lasted for years, sometimes even decades, seem to vanish as if no time has passed between these once viciously feuding individuals.

Everyone shows up and swears that they’ll do things differently, they’ll cherish their relationship, they’ll make a little extra effort to be in touch, and they’ll always keep those moments as a reminder that life is short.

If you’re lucky, sick people get better.

Things go back to normal.

The concepts of death and the possibility that your time is up are an afterthought. New feuds start to make their way back into your life and the people who stood at what they perceived to be your death bed have quickly forgotten all the promises they made when your life was flashing before their eyes.

Things go back to the way they were before. The good and the bad.

Until it happens again.

We went through this so many times since I’ve been with my husband. From 4-5 procedures for stents to a triple bypass a month after our wedding, I was always amazed by the family who came back into our lives when things got “rocky” and the ones who disrupted our peace when things we back to “normal.”

One thing I’ve learned from coming nose-to-nose with the death of a loved one so many times is that your tolerance level for the “bad” people have to offer becomes very small.

Dealing with toxic people when your life is spent juggling doctor’s appointments, hospital stays, medical bills, prescription meds, and life, in general, makes everything a blur. I’m fully convinced that it burns some important brain cells, leaving you completely fried at the exact moment your family needs you to be on your A-Game!

One of the biggest regrets I’ve had throughout both my husband’s and son’s medical journeys is that I forced myself into auto-pilot. So many moments were a blur.

It was like I was climbing the mountains, sliding in and out of the valleys, without keeping my eyes on the path in front of me. I’m lucky I got out of that trip alive.

Have you ever gotten to your destination and wondered how you got there safe because you didn’t remember the drive?

That was me.

One thing I always remembered was the people.

The tears, the words, the drama, how so many of the people in our lives made what my husband was going through about them. Looking back, I couldn’t remember the days, the details, what I saw, where we were exactly, but I always remembered how the people around us acted.

And little-by-little, I learned that what we really needed, what would continue to get us through the challenges life threw our way, was peace. We both needed a clear head to worry about who and what was important- my husband.

The patient.

To me, that saying “what doesn’t kill you makes you stronger” was always so cliché. Yet I couldn’t think of a better way to describe our journey so far.

Physically, mentally, emotionally, we’ve become so much stronger, smarter, resourceful.

As we walked into the medical building at 800 Howard Avenue on February 28th, 2020, that was part of the reason things felt so different. Who and what I was worried about…the only thing I was worried about…was the man whose hand was interlocked with mine as we passed through those doors.

Now, he wasn’t just a patient. He was a heart transplant patient, and nothing else matters more to me than seeing him through this heart transplant journey.

The last decade has taught me that it’s ok to only worry about myself and my little family, and I didn’t need to feel bad about that. This time was different.

This time, as I pulled into the parking garage to meet my husband for his first heart transplant appointment, I heard all the sounds, I felt all the feels, my eyes were on the path in front of me and I was focused on each step we took.

The thump of the metal slates in the parking garage seemed to beat with the pounding of my heart. The vision of small red hearts on the Heart and Vascular Center signs, once images that reminded me of love and Valentine’s Day, took on new meaning. The jokes my husband cracked at the receptionist desk, corny jokes that always made me roll my eyes at him, were suddenly the comfort I needed to ease my anxiety.

The beat of my heart seemed to pound directly from my chest into my ears as we waited patiently for the doctor.

The sound of my husband’s heavy breathing left me wondering if he was dealing with chest pains or just feeling as anxious as I was.

The fierce shaking of his leg, a sign that he was on the fast track to totally lose his patience, helped me start a conversation about how he was feeling.

I wondered if there was a loud amplifier projecting the sound of the second-hand into the room as it circled around the clock until finally the door opened and things started moving.

It was officially Day 1 of this heart transplant journey. When the over 4-hour intake appointment was finished, the sound of his pen scratching across the “consent to treat” form hit my ears like fingernails on a chalkboard.

consent to treat

We were doing this.

We had no choice, yet somehow we were choosing to take the road less traveled.

We walked out of the appointment the same way we came in, hand-in-hand, but this time we were silent.

There were no corny jokes, my heart had stopped pounding out of my chest, his heavy breathing had softened after he let out a long and powerful sigh when the elevator doors opened to the lobby.

I caught a quick glimpse of my husband, standing confident as he walked out of that medical building. None of these struggles were new to us, they were just different. Not only had I learned the ins and outs of handling these types of challenges as a wife and a mother over the years, but I learned how to handle them for myself.

I have no doubt that there will be rocky terrain ahead. We might even have a few slips and falls as we lose our footing along the way. But this time around, my steady ground will always be the lessons I’ve learned so far- living in the moment, focusing on the path in front of me, taking one step at a time.

I’ll continue doing things differently now, so I won’t need to say all the empty words as I stand next to what I think will be someone’s death bed.

Mostly, I’ll revisit the “life is too short” lesson daily,  a constant reminder to cherish what I do have instead of waiting for what I want to have in the future.

Loving this broken heart has certainly come with challenges, but the gifts of loving someone like him are much more valuable than what any healthy hearted man has to offer.

I’ve never been one to live with regret, and I don’t plan to any time soon.

I’m so incredibly happy that my strong, warrior husband has taught me these crazy lessons in life. I know that as long as we’re together, we’ll never stop learning with and from each other.

The heart transplant journey has just begun, but we’re learning how to be the perfect team to fix this broken heart.

I can’t wait to see our finished masterpiece.

After all, it’s the broken ones that bring the most beauty into our lives if we’re willing to take the time and care to piece them back together.

Aren’t we all a little bit broken anyways?

Overcoming Obstacles

Uncharted Waters: My Husband Needs a Heart Transplant

“That’s impossible,” I said when I first heard the news. “I don’t believe that.” I think my mind and body had gone into some sort of automatic defense mode as I tried to process the words that just came out of my husband’s mouth.

I was used to going to every heart doctor’s appointment with him, but a conflicting schedule and lack of a babysitter left me waiting anxiously at home as he discussed the next option with his doctor. A recent hospital stay had revealed that an artery they had attempted to stent multiple times had closed again just months after they attempted a more aggressive form of treatment.

Now, my husband was standing in front of me, frustrated by my reaction, as he told me his only option left was to get on the heart transplant list.

As someone who is so painfully used to navigating the ship against a storm of medical conditions in our household, it felt like I had just left the bosun to man the bridge when an iceberg suddenly appeared. What in the actual hell? Was Rob deliberately holding the telescope to his blind eye in an attempt to get out from under the difficulty of his current condition.

In my mind, something in that appointment had veered away from the charted path and straight into the eye of the storm. Did he explain everything correctly? Did he ask the doctor to explore other options? Was he just tired of living this way? Had he given up?

It took a good meltdown for us to get to the bottom of it. Or, should I say, it took an unnecessary interrogation for me to accept that this is where we were headed. Maybe I needed to ask all the insulting questions to assure my own mind that whether or not I was at that appointment, the outcome was heading in the same direction.

As I sat on the kitchen floor, completely blown away, scared, sad, frustrated…mad at myself for reacting in such a negative way…disappointed that my initial thoughts weren’t to comfort my husband…worried where this new challenge would lead us…sick to my stomach at the thought of my husband going under the knife for such a drastic surgery…I took a hard look at myself.

Why the hell had I just acted that way? It was so far from who I am as both a wife and a person. But it seems that juggling the pressure of being a caretaker to the people I love the most, for more than 10 years, was finally catching up.

It was like those naggy mothers I always rolled my eyes at, yelling at their kids for being kids. “I can’t even turn my back for a second!” While I sure felt that way when he came home that night, I realized that my emotions were rash.

So, after taking some time to cool off…getting my shit together (for lack of a better word)…I sat down and apologized.

“Can we discuss this again?” I’m sure at that moment, the last thing he wanted to do was rehash the shit show of a conversation we just had. He was as surprised as I was by my reaction. But, two things we’ve always agreed on is that neither of us is perfect and that we can work through anything if we cool off and sit down for a follow-up discussion.

This time I reacted differently. I listened. I let him talk. I asked questions about how he was feeling rather than about the technicalities of the surgery or the discussion that lead to this decision. I reassured him. We had been through so much already, not necessarily worse but equally as bad, and we had always come out stronger.

This, too, would make us stronger. When we work as a team against any challenge in life, we have an impeccable record. I was confident that we would remain undefeated. But I wanted to be sure he had the tools he needed to fight.

So, we started an open conversation and left it that way. We began to explain our feelings more to each other than we ever had. We talked about what we would need throughout this process, from each other and from other people. I guess you can say we had the heart-to-heart of all heart-to-hearts. We took a deep dive into ourselves, into our relationship, into our family, into our support system, and we put in all the thought there was to think.

And the outcome was what we needed to suit up and get ready for another battle.

You know, I think a lot of what we’ve experienced so far has been so urgent, emergencies that took us by surprise, that we never had the chance to think before we acted. We never had the chance to question or plan, never mind days, weeks, months, maybe even years to prepare. So, this new challenge has definitely been a learning experience for us both.

In this learning experience, we’ve already become stronger…as individuals, as a couple, as a team. But what I realized about our strength this time is that it doesn’t truly come from within.

I’ve been strong for a long time. We’ve been strong for a long time. But what being strong means to me today is far different than what it meant before we found out my husband needed a heart transplant.

Before all of this, strength meant that I had to do it all on my own. It meant that I didn’t need any help, that I didn’t need to burden anyone with my struggles, that I could carry all the weight on my own two shoulders.

Thankfully, we got through all the challenges in one piece when I thought I was being strong.

Truth is, I wasn’t very strong at all. I was piling up my baggage so high that I was getting weaker and weaker by the day. I was weighing myself down. In doing so, I was falling apart at the exact point when my family needed me to hold it together.

We all carry baggage. Some that’s good for us and some that’s toxic. And no matter how much baggage we have, at some point, we all need to unpack. Some things we need to save for a  rainy day and others we need to drop off at the Goodwill. Some things we need to store in a handy place where we can grab it in an instant and others we need to back on a shelf in the back of the closet.

Sometimes we sneak an old shoebox of toxic baggage somewhere no one will find it. It serves as a reminder of the things we don’t want in life, the lessons we’ve learned, the hurt we’ve grown from. There may be times when we need to pull out that old shoebox and shuffle around what’s inside. Find a new way to rearrange all the broken pieces so that we can cope better with what’s weighing on our minds.

Whatever type of baggage we’re dealing with, one thing remains the same. If you don’t unpack it, it’ll just keep piling up, cluttering your life, creating chaos, serving no purpose other than to remind you that your plate is full, breaking your back, weighing you down, stealing your energy and keeping you from having the strength you need to face another day.

I started unpacking my baggage that night. And as I did, I found a million-dollar picture that was hidden under such a big pile of crap that I had forgotten all about it.

We all have a hero…someone who inspires us to keep going when things get tough. My hero has and always will be my Dad. Not only because he was the kindest, gentlest, most loving, non-judgmental, fun person I know, but because he struggled. He struggled a lot. When I look back, it seems his whole life was a struggle. But he always overcame any obstacle that stood in his way.

He was strong not because he walked around with the weight of the world on his shoulders and did everything on his own, but because he frequently unpacked his baggage. And, more importantly, he asked for help when his hands were full.

So, here we are. Full hands. Heavy baggage. But stronger and smarter than ever. Together we’ve realized that this is a battle we can’t win on our own. And we know it’s one we won’t have to attempt to fight alone.

After a little soul searching and some self-reflection, my husband and I both realized that we had been carrying heavy bags for way too long. If we wanted to get through this next major challenge, we needed to do the one thing we had always hesitated to do.

We needed to ask our friends to help us carry this baggage. We were honest…we told them that letting others help us was not on our list of character strengths. To our surprise, they weren’t surprised at all. I laugh now because I thought we were being vulnerable when we were really telling them something they already knew.

We’re the best at helping but not the best at being helped.

So, we’re working on that too. Letting the people we love get a chance to show their love to us. Letting the ones we’re always there for be there for us too.

It’s taking some getting used to, but it’s nice to lighten the load.

It’s reassuring to know that although we’re headed for a long trip, we’re traveling with a group of people whose hands are free. People who are more than willing to help us carry our bags as we dock at one location and struggle to reach the gangway on time for our next departure.

For that, I feel stronger than I’ve ever been before.