“What’s with the rocks?”
“Do you have a few minutes? Pick a rock and I’ll tell you a story . . .”
Rock #1 gold: a miracle story (not in the book!)
After her first transplant in August, 2004 Karis went into rejection. This was expected, but treatment failed to turn it around. Four weeks after she had been diagnosed with “mild” rejection, we received sobering news. Now in severe rejection, she also had a dangerous virus in her intestine. She was balancing precariously on the rejection/infection tightrope. Treatments for these two conditions are opposite. The immune system must be suppressed to prevent or treat rejection, but we need our immune systems in order to deal with infection.
On Tuesday, November 2, Karis’s friend Tina talked the doctors into giving Karis a pass out of the hospital so she could vote. Karis said she wasn’t up to it, but Tina cajoled and encouraged her, and Karis finally agreed: out, vote, and back to bed, beyond exhausted. That evening she started coughing.
The next evening, Wednesday, a nurse appeared in her room saying Karis was to go down for a CT scan of her intestine. “I must be getting a cold. I’m having a little trouble breathing,” Karis told me. The nurse, concerned, hooked her up to oxygen. I remember Karis coughing, and the CT people turning up her oxygen.
The next morning, Thursday, Karis was taken on another road trip, this time for an endoscopy. She would be intubated, and a scope put down through her mouth to visualize the upper portion of her transplanted intestine. We didn’t know the surgeons were doing this to evaluate whether they should remove Karis’s graft. They had reached the end of their rejection treatment options and feared the viruses in her intestine would contaminate her blood, a dangerous condition that would be virtually untreatable with her immune system destroyed.
Karis and I had a lovely, cheerful conversation in the endoscopy waiting room. I waved as she was taken to the OR, saying “See you in about an hour, Sweetheart.”
A few minutes later, though, a doctor I didn’t know appeared in the waiting room, asking me to sign consent for a bronchoscopy while Karis was under anesthesia. For this, a scope would be inserted into her lungs, withdrawing fluid for culture. Alarm bells went off in my head, but the doctor was reassuring. “We just need to check out something that showed up on last night’s CT,” he told me. “This should only delay her procedure by a few minutes.”
Two hours later one of Karis’s transplant surgeons showed up, looking sober. “Let’s sit down in the conference room,” he said. Only someone who has been there can imagine the fear those few words instill in a mother’s heart. I was not prepared for what he had to tell me.
“Karis has inflammation and fluid in her lungs and they are very stiff, as if they are in crisis. We don’t know yet exactly what’s going on. She’s not breathing well enough on her own so we didn’t wake her up from the endoscopy. She’s gone straight to a ventilator in the ICU. And her intestine looks much worse. There are many open, bleeding, ulcerated patches. I advise you to call your family together—you can do it from here if you like—and then go to the ICU waiting room. There may be a moment when we can briefly let you see Karis. Also . . . if your pastor can come it might be good for you to make plans in case you need them.”
I had casually waved goodbye to Karis and that might be my very last communication with her??!!
After I contacted my scattered family and our pastor, the first waves of shock and panic rolled in. Dr. M allowed our pastor and me a few precious moments with Karis, to anoint her and pray for her healing. Then we started making funeral plans. But I was functioning on auto-pilot, with no idea how I would react if or when Karis took a major turn for the worse. By the time my children and husband arrived I wanted to be able to focus all my attention on them.
Our son Dan arrived first, driving from New York Thursday evening. The news from the ICU went from bad to worse. Antibiotics were having no effect at all. The pneumonia had gone from first symptoms to critical in 36 hours. There was now only a small area at the top of each lung that was not consumed by infection.
Friday morning Dr. M explained to Dan and me that they had transferred Karis from a normal ventilator to an oscillator. The oscillator shook Karis’s body to force oxygen into her lungs, but it only worked if she was in one position on her back. If they shifted or turned her body at all, her oxygen level dropped. The constant shaking of her body made every part of her care more difficult.
Dan left for the airport to pick up our daughter Rachel, flying in from Chicago. I called Dave in Brazil with an update. He and our youngest daughter Valerie would fly from São Paulo that evening, to arrive in Newark early Saturday and in Pittsburgh late morning.
Friday afternoon, Dr. M gave us a flicker of hope! Here’s what he explained:
Reviewing the CT performed Wednesday evening of Karis’s intestines, the transplant team noticed that the CT had also caught the lower portion of her lungs, showing nodules that looked like fungal pneumonia. Knowing Karis was at that moment undergoing endoscopy, they immediately ordered the bronchoscopy. The timing was a miracle: even an hour later, Karis was too sick to tolerate that procedure. But instead of growing fungus, as expected, the culture from her lungs was growing bacteria. They had been giving Karis the wrong antibiotics.
A second miracle was this: a doctor who rotated between labs at various hospitals happened to be on duty at our hospital that morning. This man, who had done his PhD research on Legionella, was probably the only person in Pittsburgh capable of recognizing this early that Legionella was the bacteria growing in Karis’s cultures. There had not been a case of Legionnaire’s disease in this hospital for twelve years. The head of infectious diseases had seen only one case in his entire life.
“What this means,” Dr. M said, “is that each hour Karis stays alive strengthens our tiny flicker of hope a tiny bit—our tiny hope that there will be time for the correct antibiotics to do their work against the Legionella.”
Why did he have to keep emphasizing the word “tiny”?! Hope was hope, and my heart was grabbing on and holding tight!!
As we absorbed this information about Karis’s lungs, Dr. M explained the other big challenge. Karis’s transplanted intestine was disintegrating, because they had stopped all immunosuppressant medication in order to treat the pneumonia. They had to get the graft out before Karis went into septic shock. But Karis was still dependent on the oscillator, and doing surgery on a shaking body was simply impossible.
We needed a magic window in the next two or three days, when Karis’s lungs were well enough to transfer to a normal ventilator but before she died from sepsis. That is, if she stayed alive long enough for antibiotics to work against the Legionella.
Valerie describes what was happening meanwhile in São Paulo, Brazil: “I was in PE at school running laps when I saw my dad walk onto the field. I ran over to find out why he was there and he grabbed my arm and told me he was taking me home. He was acting really weird but didn’t explain anything—he was completely quiet all the way home. Then he told me to pack a suitcase for myself and one for him; he was too upset to do it himself. I didn’t find out what was going on until we were on the way to the airport. When we boarded the plane we didn’t know whether Karis would still be alive by the time we landed in Newark ten hours later. That was the worst trip I’ve ever made.”
When Dave and Val’s plane touched down at Newark early Saturday we were able to give them good news: Karis was still alive! Dave and Valerie still had to fly from Newark to Pittsburgh, but with a little less anxiety than they had experienced on the long flight from São Paulo. That afternoon I heard the ICU doctor tell Dave he thought Karis had a chance of surviving.
Hour by hour with many others around the world, we kept vigil. Hour by hour word came that Karis was still alive. But getting her off the oscillator was just not happening. On 100% oxygen her blood gases began gradually to improve, but the nurses still could not alter her position in bed even a little without immediate decompensation. Her lungs were too compromised by the invasive Legionella. Every system of her body was impacted by the double threat of virulent pneumonia and runaway rejection. As her kidneys and liver began to fail, our tiny flame of hope was flickering.
Two days passed, then three—the outer limit the surgeons had postulated for finding the “magic moment” to attempt surgery to remove Karis’s disintegrating intestine. This surgery would be more difficult than the original transplant surgery, but they would have to do it as fast as possible to limit her time under anesthesia.
Finally, on Tuesday evening Karis was successfully transferred from the oscillator to a regular ventilator! Surgery was scheduled for 7:45 the next morning. Our family lined up in the hallway that connected the ICU to the surgical suite. The ICU double doors suddenly popped open and the medical team came through the doors RUNNING with Karis down the hall to the OR, one of them kneeling precariously on her bed pumping oxygen into her lungs as they ran. We barely had time to wave and yell “We love you, Karis!” before they disappeared.
And then it was waiting time again. We just moved from the ICU waiting room down the hall and around the corner to the surgery waiting room. The surgeons had given us no hope that Karis could survive such an invasive surgery, with her lungs, kidneys, liver, and intestine all in terrible shape. As the minutes ticked by, though, our hope increased, and seven hours later we were called to line up in the hallway again to watch Karis being rushed from the OR back to the ICU. Miraculously, she was still ALIVE!
Karis herself, deeply sedated, had no idea what was happening to her, or of the miracles that had preserved her life. For 74 days in the ICU, most of that time in induced coma, she battled one complication after another. When she was finally released from the coma, from the ventilator, and from the ICU, we were told she was the sickest patient ever to leave that ICU alive. Her reaction? “Mom, why were you so worried? Of course I didn’t die. God still has plans for me here!”