POWER PLAYER – JOANNE

This story was written by Joanne, Heart Recipient

While each transplant recipient has their own unique story, I have one as well.

I was born with a complex congenital heart defect called transposition of the great arteries.  Because of this, I underwent lifesaving heart surgery within the first few months of life.

Growing up, I had a normal childhood apart from not being able to participate in strenuous sports.  Instead, I focused my interests on academics, arts, and music.

Twenty something years later, I graduated from nursing school and started my career in cardiology on the heart failure floor.  It was there that I learned so much both personally and professionally.  After several years, I left bedside nursing but continued to work in cardiology.  As a case manager, I gained a broader perspective of caring for the patient as a whole and the importance of discharge planning and what it means to have a strong interdisciplinary team.

Little did I know, my professional background and experiences would play a pivotal role in my transplant journey.

Despite being vigilant with my health and cardiac care all my life, at 36 I was diagnosed with advanced heart failure.  To be honest, the timing was a shock but given my complex heart defect, I was very aware that there was a strong possibility I would need a heart transplant at some point in my life.  Once I completed my workup, I got on “the list” and continued to work while waiting.  Because of my firsthand experience, I knew the importance of staying compliant with the medications, diet, and follow up appointments.  So that’s what I did to limit symptoms and prevent hospitalization.  I was very strict with my sodium and fluid intake and went to the cardiologist every 6 weeks.  For myself, my daughter, my family, I needed to take care of myself and do whatever it would take.  With that being said, I thought I’d be waiting for a year as roughly predicted…

Then in January 2022 I was admitted, indefinitely, for a heart due to progression of symptoms.   Given my complex anatomy, I did not meet criteria for many of the traditional treatments for heart failure.  It boggled my mind how the only option for me was transplant.  I stopped working and became a patient on the very unit that I worked years ago!  The same people I worked alongside of for many years, became my care team.  I felt at ease being back on my old unit cared by those I knew and trusted very well.   Everyone from the patient care associates, social workers, physical therapists, the nutritionist, business associates, environmental services staff, to the healthcare providers became an extended support system in addition to my own family and friends.

Yes, I wanted to make sure that I mentioned everyone, not just the doctors and nurses.   Even though everyone was just doing their job, they rooted for me and wanted to see me get better.  Just a smile or talking to a familiar voice kept me in good spirits and provided a sense of stability in an otherwise unpredictable situation.   One example of the love I experienced was when the nurses that were basically my work moms and aunts brought me snacks and food (heart healthy of course).  It was nice to have a break from eating the same hospital food over and over again.  One particular nurse visited me every morning before her shift and stayed for an hour sometimes even two just to talk to me and make sure I was okay.   I’ll always remember those acts of kindness that made a difference in my stay.  Having a bond with so many people, most of all, made me feel less alone while I was in the hospital.

During my time waiting, I made a conscious effort to focus on what made me happy, though underneath I was anxious of the unknown.  That was something that I could control.  I wrote about my journey daily, painted, kept active as best as I could, watched the Olympics, sang, and played along with my ukulele, watched a lot of tv and Netflix, and even juggled!  I decorated my room with pictures and my artwork and made it feel more like home.  I was very busy.  Honestly, at times, I didn’t feel like I was in a hospital but instead inside my own “studio”.   On the outside, given how much I was still able to do, you wouldn’t know how sick I really was.  I still thought that I felt okay.  I had to keep telling myself the imaging and all the tests showed the real picture of what was going on inside.

When January was over, all that I had hoped and prayed for was that I would receive a heart in February, as it was “heart” month.  I stayed positive as the days and weeks passed but I continued to decline, eventually walking less and less, getting even more fatigued, to the point where I had to stay in bed most of the day.  I knew the right heart was out there for me and just needed to trust the process.  I remained optimistic yet realistic.  February wasn’t my month, but March was!

On March 1, 2022, I received my gift.    (The picture is my last picture before I went down to the operating room.) I won’t go into details, except that I did have some complications post op.  I also felt the weakest I’ve ever felt in my life, having been bed bound post-transplant for I think a week and a half.  (I have little to no memory of the first week post-transplant.)  I knew I needed to get stronger, especially if I wanted to keep up with a very active daughter.  I pushed to go to acute rehab and in one short week I noticed such a difference in my strength and mobility.  After 3 and a half weeks post-transplant I was finally discharged home.

Now 6 months later, life has changed for the better, but it is very different than pre transplant.  Post-transplant life is a balancing act of managing my medications, going to appointments, re-gaining my strength through physical therapy, cardiac rehab and the gym, eating healthy, avoiding illness and contacting my team with any concerns.   On top of that I’m also raising a young child with my husband, working full time, and keeping up with the daily responsibilities of life.  It’s a lot but it’s doable.  There’s a good reason why transplant teams evaluate a patient medically and psychosocially for a transplant.  Living with a transplant requires work and commitment.  While it has took some time for me to adjust to it all, I’m grateful to be back to living my life.

Given the situation, you would think that I would be hesitant to return to work being faced with so many memories of what just happened only a few months ago.  The thing is, something great happened to me at my hospital and I will never forget that.   It may be hard to understand, but I can’t see myself anywhere else except right there.  My hospital has a special place in my heart.

Since being back, I see the same familiar faces I’ve always seen before, now in a new light.  I’m so appreciative even more so of everything, especially of the work that everyone does.  It’s different as a patient compared to a colleague experiencing their care firsthand.   Some of them, I even work with side by side today.  I know that they are as happy as I am with my progress not just by their words, but by their actions.  Even in their busy day they take the time to check in on me, make small talk, wave, and smile.   That feeling of knowing everyone truly cares is indescribable.  As my cardiologist once said, “there’s no greater pleasure than when patients return back their life. “

Looking back at everything, I know that I’ve made great progress despite some setbacks.  I attribute my recovery and success in large part due to all the support I’ve received and continue to receive.  What I can say is that it truly is and was a unique yet humbling experience to be a patient and it gives me great joy to be able to share my story not only to fellow transplant patients, but to those in healthcare as well.  While first and foremost, I am eternally grateful to my donor/family for the gift of life, I am equally thankful for such an amazing and professional community that took care of me.  I wouldn’t be where I am today without my dedicated team.