March 22, 2012

the waiting heart: part 1

Today, MHYH’s co-founder, Judy Bode, invites us to glimpse into living while awaiting the possibility of heart transplantation.

By way of reminder, Judy has been listed with UNOS since 3/3/2010. Her heart is failing secondary to life-saving chest [mantle] radiation for Hodgkin’s Disease in 1970.

She writes:

“Last Thursday, my husband and I went out for dinner. My chest pain was reasonably tolerable, the weather was unusually warm, we had a gift certificate, and so we decided it was time for me to get out of the house.

I was reminded about this waiting game while sitting at the restaurant. We were both very hungry, we had sipped ample amounts of our lemon water, and we had chatted about all that needed discussing. We were ready to eat!

Over and over we saw trays of lovely meals brought out through the swinging kitchen doors, and swiftly delivered right past our table to neighboring hungry guests. The smells were fabulous, the dishes looked so delicious and inviting as we stole a glimpse of what they had ordered.

But these meals were not prepared for us. Our dinners seemed to be slow in arriving. Just how long does it take to cook a burger and assemble one burrito? It was hard to wait. It was hard to see others indulging in their bountiful plates, while we sat there hungry. The whole restaurant seemed to be eating except us. Some received their food so quickly: did they arrive after us?

How much longer will we have to wait?

Presently, my family and I are awaiting a new heart. Any moment of any day, we could receive a call from the Cleveland Clinic telling us that a heart has become available, but while we await that all important call, we wait on so many other levels.

When we return from testing in Cleveland, almost immediately the date for our return appointment is scheduled. We then wait for that date, wondering which will come first: the call or the appointment.

Every two weeks I wait for the results of blood work to see how my kidneys are holding up. We wait for the chest pain to decrease just a bit while lying down, wondering if I should be calling my doctor instead. We wait for my doctor to call back when questions arise, questions that often times cannot be answered.

We wait for people’s reactions when we tell them “Judy’s heart is failing.” Some respond with pure compassion. Some with a time of silence that is filled with heartfelt tears. Most continue to offer help and assure us of their prayers. Sadly, others respond with a barely recognizable sigh, a look of “now what.” Even more anguishing is waiting for a response that never comes.

So many dear ones are waiting side by side with us, holding onto our hands, and praying for us while deep in this valley; others have fled, or so it feels. I try not to feel bad about this, for I know that facing the inevitability of my failing heart is more than some can, or are willing to, cope with.

As we wait for the call, I have thought a lot about how that conversation will play out. What will be the first words spoken when my transplant coordinator calls? What will be my gut reaction—thankful, frightened, relieved? Where will the call come: at the library checkout, eating dinner, singing in church, sleeping? What sort of details will I be told about the heart? What will be my first words spoken to my husband Dan, my children, or my parents when I in turn call them about the heart that has been gifted to me?

For the first few months after being listed, every time the phone rang, I paused. We have received more than a few unexpected calls from the Clinic regarding appointments and follow-up testing, and to this day, “Cleveland Clinic” in bold on caller ID triggers an adrenaline rush sending my compromised heart into overdrive. Once we were awakened at 2:30am by a wrong number. I will never forget the look that Dan and I exchanged before picking up the phone. Each scenario serves to remind us that any day could be the day; any call could be the call; every day is an awaiting day.”

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