One on One with Gonzalo Gonzalez, MD of Baylor University Medical Center

Recently, I had the high honor and distinct privilege of interviewing Gonzalo Gonzalez, MD Chief of Heart Transplantation and Mechanical Circulatory Support at Baylor University Medical Center in Dallas, TX on #AllThingsCancer, a production of Anti-Cancer Club.

I have 4 take-aways that I’d like to share:

  1. Heart failure requiring heart transplantation is a potential late effect of some cancer treatments; it does not affect everyone who receives Adriamycin/Doxorubisin, Daunomycin/Daunorubicin, Epirubicin, idarubicin, or mitozantrone +/- chest radiation, or chest radiation alone
  2. It is not an inevitability; many can be managed medically quite nicely without compromising quality of life
  3. Although 60% of cancer survivors receive cardiotoxic chemotherapeutic agents, it is the few that will require heart transplant
  4. Heart transplant is not a cure rather it is the exchange of one set of challenges for another set of challenges, specifically rejection and infection as you enter into the world of immunosuppression for the rest of your life

I am forever thankful to and for Gonzo who upon crossing the threshold of my room would say, “Steph, you’re here and you’re not going anywhere.”

I invite you to watch this clip, then proceed over to the Anti-Cancer Club for watch the duration of the interview as it is must see for every survivor and anyone who loves a survivor.

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Heart Strong

I had the first of 8 routine follow up appointments yesterday: Heart Transplant.

Great news: my heart is well with no evidence of rejection. There was no need for any adjustments to my anti-rejection regimen, and my labs [kidney, liver, lipid, CBC, CMP, and Prograf level] were all normal.

But, here’s my issue:

In an ideal world, I would have also had an EKG, Echocardiogram, and a stress test done while I was at the medical center yesterday; however, third party payers are refusing to allow for that level of care coordination demonstrating an absolute disregard for the patient experience in my humble opinion.

Their rationale is how can a provider know that these diagnostics are necessary before seeing the patient in clinic. I think it’s fine for them to ask that question, and in many cases, the question is indicated; however, in transplantation medicine, the question is wonky.

Obviously, clinical examination is key, but diagnostics as outlined above are standard of care and necessary for adequate surveillance of heart function and the development of coronary artery disease across time.

Bottom line: What should have been one full day of follow up, including diagnostics, has been divided across two days several weeks apart forcing me into an extended waiting game with final results rolling in around 5/22.

I can only speak for myself, but I think it’s high time that common sense be injected into the delivery of healthcare and that the patient be front and center rather than any third party payer’s profit driven agenda.

I return for 6 month follow up in November for a history and physical plus labs, but no diagnostics. Diagnostics are performed around my anniversary appointment.

By the way, It’s been 9 years already: ah-mazing!

Memories and Milestones

Nine years ago this week, I was a young wife and the mom to our just-turned-5-year-old son.

Nine years ago this week, I was a young wife and mom with end stage heart failure caused directly by successful, yet highly toxic cancer treatment that I received as a child for Ewing’s sarcoma.

Nine years ago this week, I was deemed ineligible, rejected for heart transplant by a local transplant center which –seemed to be– comfortable with just letting me die.

Nine years ago this week, I was fueled by a supernatural strength as I reached out to the Cleveland Clinic to arrange to be air lifted for transplant evaluation.

Nine years ago this week, I was successful though Cleveland was clear that they may not be able to help me.

Nine years ago this week, I was air lifted knowing that if I was not accepted for transplant and in the absence of a donor heart, I would certainly die.

Today, the physical wounds have healed, and I am the healthiest I have ever been: EVER.

Today, if you encountered me you would never guess that 4 out of the last 9 years were spent relearning everything from bowel and bladder control to sitting, standing, and walking not to mention navigating our hyper-connected culture with the balance of these 9 years devoted to overcoming the emotional trauma of the heart failure and transplant itself.

Today, if you encountered me, words like “health”, “wellness”, “radiance”, and “resilience” would come to mind, and while those are appropriate descriptors, they do not give voice to the totality of my lived experience of cancer survivorship and post transplant life, the wounds that come with the territory and can reopen without warning, the scars that have injured my ability to be vulnerable, transparent, to trust.

Lest you think, this is a woe is me post; let me assure you, it is not. I have consistently chosen not to be defined by my lived experience. Instead, I choose to be transformed by it, with the understanding that transformation is an infinite process, and I am a work in progress.

The days of this week are not easy to walk through as I find myself somewhat distant to the realities presently before me in 2017. It’s as if I relive 4/15-04/21, 2008 every. single. year. With that ‘reliving’ if you will, I am forced to face the reality that the memories I have are ‘popcorn’ memories. That is, memories that pop into my mind and may or may not be related to one another. I have gaps in my memory that others have had to fill in for me across time.

We don’t get to write our own stories. We do, however, get to decide how we conduct ourselves amidst the joys and the pain which includes our attitude. Are we going to be hopeful and optimistic knowing that life will continue to be sprinkled with uncertainty, doubt, trials? To that question, I respond with a resounding YES!

Nine years ago…

I chose to be hope[full] and to believe in my future no matter what it held for me: life or death.

I chose to accept in the face of rejection.

I chose to hold on, yet I was willing to let go.

I chose to love though I hated what was happening to me, my family, our friends.

I chose to be calm amidst the tumultuous, ever fluid throes of heart failure.

I chose to be still inwardly, and act on behalf of myself outwardly.

I chose to accept setbacks: onward march.

I chose to be thankful though my heart was grief stricken over the life lost.

I chose to live in order to honor my donor’s life.

I chose to believe that all things are possible no matter how remote that possibility may seem at any one moment in time.

In truth, the very things I chose none years ago are the things that I strive to choose THIS day, every day!

 

Happy Birthday to My Heart

Nine [9] years ago right now, my heart was failing because of cancer treatment I received when I was 8 years old.

Twenty-six [26] years ago, a little baby girl was welcomed into the tender loving arms of adoring parents and an anxiously awaiting big sister.

Twenty-six [26] years ago, the donor of this heart I now carry was born; that baby girl had grown into a budding young adult,17 years young when she died tragically in a car accident.

I’ve seen her baby pictures, the strawberry hemangioma on her right cheek, and her prom pictures.

She is real to me.

How could she not be real to me as her heart has taken residence within my chest, her heart pumps lifeblood throughout my body?

Today is her birthday, my heart’s birthday. 

Even after almost 9 years of navigating the deep waters of being a heart recipient due to heart failure directly caused by cancer treatment I received as a child, there are still times when I don’t quite know how to walk through days like this one.

While I grieve her loss, I celebrate her life: THIS day, every day.

Happy birthday to my heart!