This isn’t exactly the blog post I was planning to write this morning. I wholeheartedly expected to announce today that Jody got his new lungs. Instead I’m telling you the story of another dry run. In case you missed the last one, here’s the story of our first dry run, reading that one will help you understand this one a little better.
Yesterday, June 25th, marked exactly three months that Jody has been active on the national lung transplant waiting list. When that happened, I remember his doctor speculating he would be called within three to six months of being made active. He was called after only one month of being listed, and now again at three months. Here’s the story of our second “dry run”.
Last evening at 6:45 pm, our phone rang. Every time this happens I find myself holding my breath wondering if it’s “the call,” and time to jump into action. Usually it’s not, but this time it was! When Jody answered, it was a transplant coordinator from Johns Hopkins. She called to say that Dr. Shah (the surgeon who will be performing Jody’s transplant operation), wanted us to know that there was a potential donor. We were told not to come in yet, but to begin preparing just in case. She promised to call back either way. I began to start packing things for our girls, tidying up around the house, and Jody hopped in the shower (because who knows how long after transplant it would be until he could shower again). At 8:00 pm, the transplant coordinator called back to say, “It’s a go!” In other words, this is it, this donor is for you (Jody)! She told us that we didn’t need to be there until midnight, and that surgery would be tentatively scheduled for 4 am 6/26.
You might be wondering about this big gap in time so I’ll explain my understanding of the events (and this may not be 100% accurate because often information is purposefully left out, and we have to read between the lines). Between 6:45 & 8:00 pm, I believe the surgeon and his team got word of the possible donor and began reviewing this persons medical records to know if “on paper” the donor was a perfect match. We did learn that the donor was 40 years old and that his/her lungs were not considered high-risk lungs. Once this donor was approved on paper, we received the second call, telling us to be at the hospital in four hours.
I would like to pause here to clear-up a common misconception. People often choose NOT to become organ donors because they fear they will be taken off life support prematurely so that their organs can be donated. This is just plain false, and quite honestly an uneducated argument! When tragedy strikes, and people experience brain death, it’s only a matter of time until their organs begin to shut down and death is imminent. In the case of Jody’s potential donor last night, the family would have been told that their loved one was not going to survive whatever it was that caused this tragedy, and that death would be soon. They were most likely given the option to wait it out until the end, in which case the organs would have been unusable (and would probably have been a matter of hours to a few days), or to make the call to stop life support, thereby avoiding the death of their loved ones valuable and viable organs. They would have been given the option to donate their loved ones organs so that hope could come from their tragedy. Let me be blunt, sadly, organ donation or not, this person would not have survived their injuries. People are NOT taken off life support for their organs if there is ANY chance of survival. Please make sure you are properly educated before you make the decision not to become an organ donor. In this case (and any case of organ donation), I’m thankful the family made the selfless decision to give life (because even though it didn’t work out for Jody, I’m sure others were blessed with this persons life-giving, life-changing organs). This family has been heavy on my heart, and I am keeping them in prayer because even though they are giving life to others, they are grieving a terrible loss of their own.
Okay, now that I have stepped down from my organ donation soap box, I’ll return to our story. Up until this point I believe the donor was being kept alive and on life support. Once it was determined on paper that the lungs would work, and we were notified, a transplant surgeon (not Dr. Shah himself), and a cardiothoracic fellow (doctor) flew out to wait for and personally evaluate the lungs once they were harvested. This sounds fast and simple, but it takes time and patience.
Final goodbyes before transplant
While all of this was occurring, I was so thankful for the time we had to prepare. This was exactly what I (and probably some of you), had prayed for. We had time to pause and think without rushing around like chicken with our heads cut off. By 9:10 pm, my Mom had come and gone with our girls, but not before we took a family picture. At 10:05 pm we hopped in our van to head to JHH. Ironically, when Jody started the ignition, the first words I heard playing on the radio were, “Tonight’s the night.” Words from the Toby Mac song, City On Our Knees. I couldn’t help but wonder if that was a sign. Apart from the pouring rain, our drive to Hopkins was seamless, the complete opposite of our last stress-filled dry run. Because it was later at night, we hit no traffic, it was great! We arrived at JHH at 11:35 pm.
Since the admitting office was closed, upon arrival we were instructed to go to 10W (the cardio-thoracic post-surgical progressive care unit). This is also the unit to which Jody will be transferred once he is moved out of the ICU following transplant. Once there he was told he would have blood work done, an IV started, an EKG, and be placed on a cardiac monitor. At 1 am a cardiothoracic resident came in to review the procedure, answer questions, and have Jody sign consents for surgery. The team of physicians who had flown out to get the lungs were not back yet, and surgery was still tentatively scheduled for 4 am. At that point we knew this could still turn into a dry run. In fact, we were told that Jody may even be taken to surgery, put to sleep, only to wake up and be told the lungs were not good, and that the surgery never happened (imagine the disappointment in that). Despite that risk, we believed that this was the real deal. We felt relaxed and actually dimmed the lights in the room in an attempt to get bits and pieces of sleep. At 2 am the same resident who had signed consents with us opened the door to Jody’s room and instantly we knew. His face said it all, no words were needed, but he spoke something like, “I’m really sorry guys, we can’t use the lungs. There were nodules on them and Dr. Shah doesn’t feel comfortable using them. It’s not worth the risk. You are free to sleep here or to go home, I’m really sorry.” Unlike last time I was stunned.
Everything about this dry run was perfect, exactly what we had hoped and prayed for. In fact on the way home (at 2:15 am) we were debriefing and Jody asked me what I would do differently the next time, and I couldn’t think of anything. It was fabulous to have the advanced warning and so much time to prepare. The drive was uneventful. Since it was late at night the hospital appeared empty and quiet. One word to describe this entire experience is calm. We were prepared and relaxed, unrushed, and unlike our last dry run, everything flowed smoothly and calmly. Even the timing seemed right, my FMLA at work has now been renewed for another year, and this would allow Jody to be home for our oldest daughters 6th birthday in August, and first day of Kindergarten the day after that. I guess because it felt right, I believed it was right. But I was wrong. After our last dry run I was relived, I just wasn’t ready, this time I felt genuinely disappointed, Jody too. We left bummed and emotionally drained. This time when we got in our van, the first words of the song we heard playing on the radio were, “And I’ll praise You in this storm…” (Praise You in This Storm, by Casting Crowns). I had to stop and say, God I don’t understand it, I’m disappointed, but I trust You and your timing, so I’ll praise You regardless.
We’ve now experienced both a bad and good “dry run.” Who knows what the next call will be like. Hopefully it won’t end in me writing a Dry Run #3 blog post, but rather in my making that long-awaited announcement that Jody did indeed get his new lungs. Until then, continue to pray that the next call will not hold the stress and craziness of dry run #1, but instead would be covered in the peace and calmness of dry run #2.
CF Wife 