Change of Heart

(Posted to Facebook Notes 2.25.12)

As my parents drove me to the hospital Tuesday, February 21, my greatest fear was being told that I would need a heart transplant. After hours of testing and waiting, everything changed when I was told that I needed a new heart, but was too sick to receive one.

My mind is a great big fog. And that feels like a gift. I keep thinking that "when my head clears, I'll sit down and send an email or post a blog or make phone calls", but I'm not sure my head will clear anytime soon. Many of you have given me your love and support and although somewhat impersonal, this seems the best way to update.

I had been told last Thursday that my tests indicated that I might need a heart transplant. Although I have seen a cardiologist since my early teens, I never thought that a transplant would be in my future. I was shocked and afraid, but suspected that this could be a false diagnosis like so many I have received over the past year. A Right Heart Cath was scheduled for this past Tuesday to confirm the situation, and I began praying that they would find a functional heart.

I received great counsel Sunday afternoon and although the words spoken were not what I had hoped to hear, I left the meeting with a sense of peace. While speaking with my parents late Sunday night, they decided to drive from Denver on Monday to be with me on Tuesday. I am grateful for many reasons that they were with me that day.

I was conscious for the procedure, and could sense that there was some uncertainty regarding the results they were seeing. I kept reflecting back on the words from Sunday's counsel, suggesting that no mysteries would be left undiscovered, and I offered up a prayer that the technicians would have sufficient discernment to move through the procedure. Although a bit chaotic, we were able to complete a thorough test. The technicians and nurses were all very vague regarding the results, so my parents and I used it as an opportunity to stay optimistic and hope for good news. Consequently, we were floored when they informed me that I did need a heart transplant, but that I was currently too sick to receive one. In just a few hours, our prayers had changed from wanting to avoid a transplant to now hoping that I would soon be well enough to qualify for one.

I was born with a birth defect only recently understood as Non-Compaction of the left and right ventricles. Over the course of my life, my heart has become so diseased that it has caused high pressures in my lungs (Secondary Pulmonary Hypertension). If I were to receive a new heart in my current condition, my lungs would quickly blow out the new organ, so I cannot be listed until those pressures are controlled. I am receiving pulmonary drug therapy at home for the next month, and the doctors seem hopeful that if it can be reversed, we will know soon.

As I first mentioned, I am definitely in shock, but feel that the shock is a blessing in itself. I also feel a great deal of peace as I reflect on words spoken to me, and impressions I have felt, these past few days. There is little to be done now beyond waiting and praying, and I feel blessed to have the support of so many friends, family, and even strangers. I will do my best to maintain updates and welcome calls and emails from all of you.